Paul and Amy's Amyloidosis Blog

Three Shots. One Race. One Posse.

2011-08-13T01:09:00.004-04:00

The 2011 New York City Triathlon is over. We did it, Paul's Posse! We are the champions, my friends because I believe I can fly. Don't stop believin' in the eye of the tiger because we got the beat and mama said knock you out so you can lose yourself in the music, the moment, you own it, you better never let it go.

Whew. That felt great, right? Pump those fists in the air. High five some random stranger at the grocery store deli because we freakin' did it. We came from Arizona, New Friggin' Jersey, Virginia, Tribeca, the District of Columbia, the north side of New Castle, PA, North Carolina, Upstate, the 'Burgh, and the Flatiron district (Dakila, Elke, Baz!) to name a few. We came together and blasted that race to bits.

I was hamming it up for the camera. The wrong camera. So I just look like a crazy person.

While we were training and working and having kids and raising kids and getting engaged and obtaining advanced degrees and dealing with so many of life's triumphs and tragedies, we somehow raised over $38,000 for the Amyloidosis Foundation. That's almost as much as last year's team raised and they had a larger pool of team members. I am so proud of us. We are helping patients, caregivers, researchers, doctors, nurses and others who battle this disease every day. They are a small but mighty group. So are we. Did I say I was proud? Thank you to all of you.

Photo courtesy of Ken Lager Photography

Here's a list of my top NYC Tri moments:

The encouraging emails that we got from readers of the Wall Street Journal article about the team. We even got one from 3-peat NYC Tri champion Rebeccah Wassner.
Trying to recruit my cousin Joyce and my brother-in-law Nate into doing the race next year. I know Joyce. You're too busy giving singing lessons and being Mary's trainer. And Nate, you don't even have a fake excuse, do ya?
Getting a chance to talk to my cousin Eileen on a park bench near the 79th Street Boat Basin while we waited for a ride to the team dinner. Eileen, who is in her 60s, admitted to me that she was nervous about doing the swim as part of a relay team. It hit me while talking to her how much giving it took to do something like this. How she and others on the team had made the choice to break away from their lives and obligations, their fears and trepidations, and brave the waves and muck. I will always be grateful for her. Eileen kicked ass. So did the rest of the Posse.
Just a few minutes before marching to our swim start, a kind stranger informed a group of us Paul's Posse gals that my cousin Krissy's wetsuit was on inside out. So we rallied to remove Krissy from the wetsuit without unzipping chunks of her skin. The collective giggling over the whole thing calmed all of our nerves a bit. Krissy, how on earth did you get into that thing? Oh, and I'm sure you saw me walking around transition a few minutes later with my helmet on backwards. It must be a Lambo thing.
Want to know what jumping into the Hudson River felt like? A bit like David Byrne at the beginning of this video. Salty. choppy. Grey-ish green. Lonely. My teammates all swam ahead into the the great beyond leaving me to wonder "How did I get here?" Terrifying and weirdly thrilling.

Photo courtesy of Andrea Milo

While passing me on a hill during the bike leg, my friend Liz turned and said "I smell bagels." I was so hungry I thought I was having some kind of mirage and that my fellow riders would soon start morphing into bagels with helmets on.
Biking from the Sheraton on 53rd and 7th to the bike transition area on the Upper West Side with my cousin Barb and my sister Jill to check our bikes in. I knew if we could weave our way through midtown Manhattan tourist and cab congestion hell that we would be unstoppable on Sunday. And we were, right ladies? Sort of like the Freda family's answer to Charlie's Angels? Well, not quite, but you get the idea.
I'm not much of a believer in ghosties or spirits but I actually talked to Paul while running through Central Park. We had run there together so many times before. Every time, especially this time, talking to him made my legs feel a bit lighter.
At the finish line, I didn't hear my son Max cheering me on. Then I crossed the line, turned to my right, and there he was, nonchalantly greeting me with a "Hey mommy. Did you win?" You can see him on the right side of this picture, just below the flag, chasing me down.

Finally made it to the finish line. I couldn't hear my son Max but the camera captures him chasing me down.

Doing three shots of Patron with so many awesome friends and teammates at the race afterparty. Three shots. Get it?

What were your favorite moments, fellow teammates?

Swimming To Second Grade

2011-07-11T00:07:00.010-04:00

When I swim I am always surprised by how noisy it is, the sound of bubbles blaring with each exagerated exhale. This intense cacophony feels like a blend of physiological stress and comforting emotional connectivity to my oldest son Max. But before I get into that, let me explain why in the hell I'm putting on a dazzling silver Speedo swim cap in the first place.

My aspirations as a swimmer are new (and most likely temporary) as I prepare for my first (and probably only) Olympic-distance Triathlon. Yes, I was part of Paul's Posse, the triathlon team I put together in 2010 to honor my late husband Paul and to raise money for the Amyloidosis Foundation, but only as a runner of a relay team, jaunting a mere 10K and somehow getting a medal for it. This year, Paul's Posse is returning to the New York City Triathlon and I'm in for the whole race.

The swimming, initially, was the most terror-inducing of the three legs to train for. I took a lesson back in February on a college campus near my office. My coach was a slim, handsome guy named Bradley or Todd or something like that, and he, technically speaking, could be my son. Tadley watched me struggle to put my cap on and adjust those damn goggle straps. He was aloof but not unkind when he said "What's your shoe size? Maybe we should put some flippers on you so that you don't get frustrated." 38 years old and feeling as hapless as ever, I tried not to fall while waddling with flippers to the pool's edge.

The lesson was eye-opening and took me out of my comfort zone, my brain synapses aching as he blazed through 10 or so different ingredients for a seamless freestyle technique. There was the way you turn your head to breath while your arm is still extended, as if you're plugging your ear with your own shoulder. There was the pivot of your body at the hips, as if you are almost going onto your back, but not quite. There was the breathing itself, the exhale had to be forceful, like the kicks. And your arms, all the while, should be the opposite, clean and crisp, barely making a ripple as they quietly sliced the water in front of you. There were more that I forgot since I was so distracted with flippers and Tadley.

When he showed me the "shoulder plugging your ear" breathing thing, I mastered it pretty quickly, but my arms flailed, splashing with abandon, and I forgot to kick. When he demonstrated the best way to slice the water in front of me with my arms, I could do that, but my breathing turned rushed and erratic with my neck straining to get my head too far out of the water. Our 45 minute lesson was over so quickly. I asked if I should come back. Brodd told me I should just practice as much as possible, and poof, I was on my own.

Months went by before I returned to the pool. I was training for a May marathon and running kind of took over my life. Then, last month, I went back to the college pool and just kept on keepin' on. The bathing cap stretches much easier, each lap doesn't leave me winded anymore, and I scoff at the bin of flippers. However, I still struggle to make all of those components and elements of swimming seamlessly integrate. And while I swim, I always think about my son Max and his recent completion of first grade.

Max entered the year on shaky ground. Behaviorally and academically, it seemed as if he'd never find a rhythm. I asked that he be evaluated by the district child study team. His abilities in Math and Social Studies and various other subjects were scored within average or above average range. Yet his reading fluency was only on par with PreK 4 kids. His year started to go a lot smoother post-evaluation when he qualified for and received reading assistance from the special education teacher as well as after school one-on-one tutoring that his teacher kindly offered. Despite this turn around, I am constantly uneasy about his progress. When I read his end-of-year report card and saw the note of congratulations that he was moving on to second grade written directly beneath his "unsatisfactory" mark for spelling, I felt overwhelmed and confused for him. I wondered if he would always face anxiety and difficulty when it came to reading and writing, and therefore would always face anxiety and difficulty within any academic setting.

During a recent 30 minute swim, as my kicks fizzled to nothing while my breathing rhythm went perfectly, I recalled Max working on his last book report of the year. He tackled the book on his own, reading each word aloud without giving up or asking me for help. It brought tears to my eyes on a Sunday morning as it felt like a breakthough. Yet, when he started writing his book report, there were many eraser marks to correct backwards letters and forgotten capitalization. Some parts smooth. Some parts messy.

He was trying to fit it all together in the same way that I was. But the noise for him was a lot louder and more complicated than bubbles. And the perfect recipe for reading fluency, and all of the other milestones 1st graders are expected to hit, had a hell of a lot more ingredients to remember than the 10 or so that make up the perfect freestyle swim stroke.

Remember first grade? Remember when school and the construct of "learning" suddenly became such a huge part of your life? The daunting task of being responsible for your very own desk, with its pencils and rulers and expanding piles of worksheets? Reading outloud in front of your peers, your very first set of actual friends, writing in front of them at the chalk board, practicing lower case vowels and consonants with them over and over again, then somehow going off to play for recess and recharging for more? These are the flashes of it that I remember. It wasn't seamless or easy or smooth like a Michael Phelps slow motion replay. It was overwhelming and as jarringly noisy as Saturday morning construction outside a first-floor bedroom window.

Now, when I swim, I try to embrace the noise and the complex layers of learning that exist for anyone of any age learning something that is way out of his/her comfort zone. I am still learning to swim and as a bonus have learned to strive for patience and empathy for my kids and other kids as they tackle so many words, images, abstract ideas, and problems -- both on worksheets and in their far less predictable non-academic lives. Their challenges are so surprisingly loud and far more difficult than plugging your own ear with your shoulder while breathing with your mouth just barely above the surface of the water. You might say that Max is the best swimming coach I've ever had.

Goodbye Florida Stranger

2011-06-23T00:17:00.001-04:00

I just learned that Doug Zwit, known to readers of this blog as "Florida Doug," passed away on May 7, 2011. He was the ultimate Amyloidosis Warrior. His obituary is here. I hated to read it. I'm so sorry for Jo Ann and all who loved Doug. I've never met you, Jo Ann, but please know how saddened and sorry I am.

Doug was a stranger yet I felt that in a way he knew Paul better than any of us. Thank you, Doug, for sharing all that you did. Your words mattered to so many of us. Rest in peace.

Copenhagen by Lucinda Williams

2011-04-18T21:13:00.000-04:00

I downloaded the new Lucinda Williams album a few weeks ago and so many things about this song left a familiar lump in my throat, ache in my heart, and pit in my stomach. Grief is tackled in many art forms but there is something so raw and resounding about her words here--the idea of a 57 year old woman who might as well be 7 when faced with the confusion and expansiveness of loss.

"And I'm 57 but I could be 7 years old,
Cos I will never be able
to comprehend the expansiveness
of what I've just learned

But you, have disappeared
You have been released
You are flecks of light
You are missed

Somewhere, spinning round the sun
Circling the moon
Traveling through time
You are missed"

The Best Sunday Mess

2011-04-10T22:43:00.001-04:00

There's a fort made out of Fresh Direct boxes in middle of my living room. My couch is pretty busted up from 6+ years of kid jumping, but boy does it feel comfortable tonight. Lucas wrote on the wall to my left with a giant chalk circle as well as the wall to my right with a dazzling array of dark pencil hieroglyphics. I can't tell if that's a half eaten chicken nugget on the floor or a Quaker Oatmeal Square. Ben 10 is turning into Rip Jaws on my TV in order to save an underwater resort from destruction at the hands of glowing octopus aliens. It's Sunday night at 7:30 PM and both of my sons just crawled onto my lap, cuddling up to me in their PJs, one on each knee. Ben 10 ends and they head to brush their teeth then pick their bed time stories. It's a Dr. Seuss night: the Grinch for Lucas, The Lorax for Max. Max shares his theory that the Lorax is actually the Grinch when he gets older. I tell him he might be on to something. We read. They fall asleep.

Opening Day

2011-03-30T23:10:00.021-04:00

I am immersed in the noises of my son Max’s baseball practice. Even though we are in a high school gym due to the sub-freezing temperatures of March, it is the sound of Spring, the baseballs slapping into mitts, the tiny racing feet against the basketball floor boards, the chatter and laughter as ground balls miss their gloves and roll between their legs. I hope my son will embrace and love these noises the way that I did and the way his dad did.

There is something about watching the ball smack into the gym floor just a few feet in front of him that breaks my heart. His coach, a big Latino guy named Ronny, scoops it up and learns over to offer him some throwing instructions. I’m watching Max intently while Lucas scales the bleacher cliffs around me like a carousing teen, singing the Ben 10 theme song and digging into my backpack for juice boxes and toys.

Ronny puts Max fingers on the strings of the baseball then demonstrates how to step forward as you throw. I forgot you even had to do that. I want to break inside Max’s mind and help him to understand how that split second between the step forward and the release of the ball will make him feel so strong once he gets it, and understands the rhythm of it. But I don't need to. In less than 30 seconds, he was throwing line drives. I am elated.

Lucas is half-crying and it takes me a few extra seconds to shift my attention away from Max back to him. “Where the hell is he?” I think, slightly panicked. I look down to see him 4 feet below our elevated bleachers, on the gym floor rubbing his arm and debating about whether or not he should cry. “Luke, how did you get down there?” I ask. “He fell,” snips another mom as if she's about to add a “duh!” at the end of that sentence. I don’t bother to look at her but I do want to punch her repeatedly as a thank you for being a judgmental bitch.

This is the way my brain reacts to many things these days -- like someone irrationally trying to justify or defend her harried state of day to day living. Fortunately, such imagined actions stay inside my brain and don't result in an actual assault. Instead I go get Luke and check his arm, which is thankfully fine. But oh the angry things I imagine: myself calling her something like “sweetie” and gently telling her in a soft but scary voice that I am a widow and that even organizing myself to get to this goddamn baseball practice was indeed a major accomplishment. That when I signed Max up for baseball he screamed at me and told me I was stupid and that he hated it because sports were dumb and that I wanted to throw him like a baseball into the dirt for reacting that way. I want to mention to this perfect mother that one of the last things my now dead husband was able to do before his shockingly rapid and surreal decline in health was to take Max to a game at Yankee Stadium…the old one. The real one that Ruth built, and all that history shit. How I almost talked him out of doing it by arguing, “Is 85 bucks a ticket really worth it to a kid who isn’t even 4 yet and doesn’t know the difference between Jeter and Jar Jar Binks?”

Well, fellow mommy, on this freezing Spring Saturday, my eldest son is learning what baseball is. So don’t ruin this moment.

My internal tirade ends and the sadness of why I am all bent out of shape due to two words from a stranger begins. This garden-variety normal Saturday baseball practice would have meant so much to Max’s dad, my husband. Paul would have applied oil to Max’s baseball glove and come up with all sorts of clever ways to break it in. I only got as far as putting the glove under his mattress, which the babysitter removed explaining that it would make the bed too lumpy. Paul would have told him all about Maz and Clemente, elated with the news that Max’s team mascot was the same as our now hapless but beloved hometown Pirates. He would have dug out his old uniforms and hats and souvenir tickets. He would have told him about how he was working at Yankee Stadium as an editor during the 2001 World Series, the night Jeter became Mr. November with an extra-innings homer.

But Paul's been gone a long time now. So on the way home from practice, I talk instead. I tell Max and Lucas that when I played softball, I used to strike out sometimes and hit home runs sometimes, and once had an inside-the-park homer after an opponent tried to call time out while I was rounding third. I explain that their dad, Uncle Philip, Uncle Billy, and Uncle Jamie all played. How their grandpa played in the Army. I describe how I loved to play Wiffle ball against my big brother and my older cousins. I tell them about getting slugged with a bat when I was a catcher, and that complaining in the dug out about the heat during a July tournament resulted in a cooler of water over my head. They laugh at some of the stories. Some of them they find so boring that they ask me to turn on some music instead.

In the movie A League of Their Own, Tom Hanks, playing a liquored-up coach of a womens baseball team, famously declares, “There’s no crying in baseball.” When we get home after Max’s first ever baseball practice, I ask my two sons if they want to practice stopping some grounders later. When they both say yes, I don’t bother to hold back the tears.

Florida Doug

2011-03-04T00:05:00.003-05:00

I was overjoyed a moment ago to discover that "Florida Doug" posted to his blog. Nicknamed "Florida Doug" by my friend Alicia (whose husband is also named Doug), Doug Zwit is an incredible writer and amazing human being. I've never met him, but I hope to some day.

Back in August of 2009, I came across Doug's blog which chronicles his own battle with Primary Amyloidosis. I mentioned it in some posts here. Then my friends started reading it.

The remarkable thing about Doug was that he would post almost daily, no matter how sick he felt. And his writing was so raw and honest and brave.

In January 2010, he quit posting. I worried. A lot of people in the Amyloidosis community did. I checked in to his site regularly. My friends and family asked me if I had heard anything. I hadn't. I hoped that he was safe. So coming across his latest post, dated February 15, 2011, was pretty exhilarating. Although he has obviously been through worse than hell, seeing his words reemerge on the screen brought a whole lot of joy to one of his biggest fans.

Welcome back, Doug.

Valentine's Day Sludge

2011-02-14T22:42:00.003-05:00

Today, I went running during my lunch hour. It was in the 50s and sunny. It was Valentine's Day. Friends were posting those chain statuses on their Facebook wall about their significant others, when they met, how they met, why they loved them so. I tried to put that out of my mind as I was running, the only thing that seemed to enable me to put such things out of my mind these days.

I broke routine and opted to put away the headphones and actually hear the sound of my own breathing, the occasional ripple of calm Hudson water, the thump of my heavy-footed gate against the pavement. I've never been a runner who could win many style points. My form is ugly. My frame is at the mercy of gravity. I do not glide but instead clomp along. But today I didn't care. I was running.

There were a lot of puddles. I enjoyed splashing through a few of them. 30 minutes into the run and I felt that shifting of mental gears, from initial achy trepidation to a simple lightness, a confidence that I could just keep going. It was Valentines Day and I was alive and I was happy.

Then, an innocent-looking sedan drove by me and splashed a giant sheet of sludgy, mucky, snow-melty, urban-gunky water all over my body. The force of it reminded me of being knocked over by a heavy wave while on a childhood vacation in Ocean City. The water lodged deep into my right ear. (Some of it is still there.) It seeped into my eyes. I remembered noticing heaps of dog shit that has been floating around in the plowed snow mounds-turned-puddles as I walked my son to school this morning. I thought of that, plus God knew what else, lodged inside my ear, and covering my entire face. I kept running but I cursed loudly. I cursed again, more loudly. Still running, I turned around and glared at the oblivious tail lights of the sedan. Probably a 97 something or other. Corolla, maybe? Like the one I had just sold a few months ago.

A few minutes later, I could hear my breath again. By the time I finished my lunchtime run, the sludge had dried and again I felt a simple lightness. I headed in to shower, heavy-footed and happy.

Been So Long.

2010-12-23T10:03:00.004-05:00

It has been so long since I've posted. I've started drafting posts about everything from the Philly Half Marathon (my time was 2:20!), to ghosts of Halloweens past, present and future, to nearly punching a kids birthday party magician when he told my six-year-old to "go get his father" in front of a crowd of 80 people. I started to write one on December 20 about the two-year anniversary of Paul's death, one that I wanted to dub "Paul-i-pa-looza" by taking the day and visiting all of the places of significance to Paul and me (our apartments on 73rd and 10th Streets, Sushi Samba, Sloan-Kettering, the condos formerly known as Cedar Tavern.) Time and energy prevented the "palooza" from happening so I kept it simple by going to Eataly, the new Italian food mecca owned and operated by Paul's doppelganger Mario Batali. Oh the incredibly fresh, delicious food (how can they make cauliflower taste that good? How?) and the "waiter, another please" wine.

After a sobering-up walk and train ride home, I arrived to my family. My sitter smiling and calming. My kids in their cozy pajamas. Homework was done. Dinner was eaten. All was ok. It wasn't exactly a Paul-i-palooza but it felt right.

After Spongebob, books and bedtime, I stayed up until 2 AM making this video of Max and Lucas as a Christmas Card to all of my friends and family.

Happy Holidays 2010 from Amy Hawthorne on Vimeo.

And that felt right too.

My friend and coworker Ellen posted a wonderful holiday story to her blog a few weeks ago in which her young son explained how he sang the song "Minutes" in school. He was referring to "Seasons of Love" from the musical Rent. What better holiday song is there, really? How do you measure a year? Or 2 years since a loss? Or 7 years of marriage, cut so abruptly? Jonathan Larson had the right idea. Daylights, sunsets and cups of coffee don't cut it. Measure it in love. Thanks again for that reminder, Ellen. And thanks to all of you for reading.

The Show

2010-10-24T22:15:00.005-04:00

Lately I've had notes coming home in Max's school folder saying that I should review his alphabet with him daily and log every book that he reads. We spend over an hour a day doing homework already as he struggles to keep up with the demand. This is overwhelming for Max and me and particularly sad for Lucas who spends his evenings watching and reciting dialog along with Diego, Alicia and Swiper while Max and I battle over math word problems and the differences between p, d, and b.

The timing of advice from my parent/child bereavement support group leader couldn't have been better. "Take some time this week to really enjoy your kids," she told us, a group of young adults who have lost a significant other or spouse, all unsteadily trying to parent through grief. "Put the phone away, don't worry about homework or the dishes in the sink, and just be with them." So, this weekend, apart from some brief "me" time to go running and attend a friend's baby shower, I did just as she suggested. And it was wonderful. Here are some highlights.

The beginnings of an elaborate performance starring the caped crusader.

Act II featured different costumes and accessories and involved jumping on the bed for about 30 minutes while singing several impromptu pop song compositions.

Jumping.

A heartfelt duet.

The New York Aquarium was fun. But not as fun as a run along the beach at Coney Island.

The sand did not slow them down.

Max saw this picture and loved how his shadow made him look "like a grown up."

Back at home in the artist's studio/my living room, Lucas Pollack boldly turns the recycling into his canvas.

Bad Choices

2010-10-06T23:57:00.026-04:00

Here I am playing the role of the demonic bride. Note the eerie inferno that surrounds me.

I look back on my wedding day, which was 9 years ago today, and sometimes think about the bad choices we made when planning our nuptuals. Well, bad choices I made, actually. Although Paul had his points of input -- "Here honey, this is our china pattern. Ok?" "Uh, ok." -- planning my wedding did unexpectedly send my psyche into Bridezilla-land, where I relished in controlling with evil exactitude every detail down to the spine of the guest book.

My friend Allison described her own version of this experience as a demon taking over her soul. She literally believed she had eyes in the back of her head on her wedding day so that she could sense even the slightest action or glance that was counter to her matrimonial vision. And with this special new four-eye 360-degree laser vision capability she felt empowered to strike down on any offenders -- be they caterers, in-laws, friends' children, or clergy -- with a Samuel L. Jackson level of vengeance.

For me it was slightly tamer. Though not much. And in retrospect, it resulted in some pretty lame choices like:

1. Not having cheezy dance songs played. We (I) thought we were too classy for that. As if. No Macarena. No Electric Slide. No Chicken Dance. No Kool and the Gang. Instead we booked a local swing band to play crooner Rat Pack music. Yawn.

2. Insisting on a vegetarian menu option. Uh, again with the faux classy thing.

3.Booting my parents close friends off of the guest list. These people were and still are closer than family and we booted them off the list because it was our wedding, dammit. The rudeness of this one still makes me annoyed with me.

4. Registering for margarita glasses. Never used 'em. Probably never will. And damn if they don't take up a lot of cabinet space.

5. Registering for red satin sheets. Seemed fun and sexy at the time. Then Paul nearly broke his arm hydroplaning off of our NYC apartment loft bed.

There are others, but I'm getting too old to remember all of them. The backdrop to every pointless tear shed about the center pieces not being centered enough or the typo in the program, of course, is that my best choice trumped all of the silliness. And that choice was the decision to marry this guy:

There he is during a pit stop on our honeymoon in New England. He didn't even get mad when I sang Barry Manilow's "Time in New England" everytime I opened my New England travel guide.

And here he is sipping coffee at a Portland diner, wearing a sailor-ish hat. We were always serious about our breakfasts and our coffee.

And here he is looking dashing in front of a really gorgeous blue Fall Vermont sky.

And here we are together in Portland after quite a few drinks, our hair messy from the rain, already a long way away from the tux and gown that had mattered so much only days before.

Our Room Awaits

2010-09-20T21:07:00.005-04:00

Tonight, I jotted something on the calendar with the pen, the one that reads "Your Marriott Awaits." I remember its original home, neatly placed on the eerily tidy desk blotter in the corner of my room at the midtown Courtyard, the one in the 50s near 3rd Avenue, a block or so from where I first bunked with a college friends' family after arriving in New York from Central Ohio.

I spotted it while watching a late-night repeat of Larry King Live. I could feel nothing but relief, maybe even a bit of gratitude for the silence, away from hospital beeps, away from jargon and numbers, and (especially) away from those new beeps, the ones that belonged to bigger, more complicated machines, wheeled in with noise and urgency to your new room in the ICU a few nights before, their mission to keep you alive.

Why did I take the pen? I can remember getting out of bed during the commercial break specifically to throw it in my bag. Then I stopped at my Blackberry, on loan from work, to check my email, to check anything that wasn't about those beeps. Who was on Larry King? Howie Mandel? I only seem to watch CNN in hotels, even to this day. And all hotels and hotel pens or stationary, or desk blotters, or complimentary shampoos, or handy hotel-branded sewing kits, always remind me of you. Even to this day. You saved that kind of stuff.

Now that pen is in our kitchen, living in more crammed quarters, forced to share space in the vase with heart-shaped erasers given to Max at last year's school Valentine's Day party, 4 or 5 pairs of scissors tucked away so Lucas won't get any ideas, and probably a whole lot more reminder items that I try not to notice, but do anyway.

Call for Paul's Posse Team Members: Help Fight Amyloidosis in the 2011 NYC Triathlon

2010-08-28T01:38:00.006-04:00

Max and I approach the finish line in the 2010 NYC Triathlon.

What will you be doing on August 7, 2011?

Hopefully, you'll be jumping in the Hudson River, biking the West Side Highway, and running Central Park with Paul's Posse to fight the fight against Amyloidosis.

In 2010, 40 team members raised over $41,000 for the Amyloidosis Foundation, an important organization dedicated to Amyloidosis education, research and awareness. It was an incredible experience that I will never forget.

Amazingly, it's already time to plan for the 2011 Triathlon. While it will be hard to top the esprit de corps of the 2010 roster, we hope to make Paul's Posse even bigger in 2011.

Whether you are a seasoned distance or multi-sport athlete, complete and total fitness newbie, or simply want to do something impactful, I ask that you consider joining our team. It's a wonderful way to honor Paul and anyone else whose lives have been cut short by Amyloidosis. Plus, you can get healthy and enjoy the rush of an incredibly fun weekend in the Big Apple.

So read the vital info below, and let me know if you are definitely in for 2011. I need to let the NYC Tri people know how many charity slots we need no later than Wednesday, September 1, 2010.

Vital Info about Paul's Posse and the 2011 New York City Triathlon:

Race is on 8/7/11 in NYC. All kinds of info here: http://www.nyctri.com/
Course description is here (It's an Olympic length triathlon):
http://www.nyctri.com/Event_Information/Course/Course_Description.htm
If you're nervous about completing the whole race and want to do just one leg, let me know which leg you want to do (swim, bike, or run) and I'll try to pair you up with others to create a relay team.

The registration fee for individual charity team participants will be $500 while relay teams will pay $600 ($200 per relay team member.) Participants must pay their fee up front on the fall due date which is forthcoming from our Triathlon rep.

There will be a fundraising goal of $1000 per participant. All money goes directly to the Amyloidosis Foundation. Please keep in mind that this is just a target amount and there will be no penalty if you don't hit that target. Any fundraising and awareness raising efforts go a long way, regardless of the monetary total.

If you are definitely interested, I absolutely need to know by September 1. I'll need your name, email address and whether you want to do the whole race or prefer to join as a relay team member (specifying which leg of the race). You can email me this information no later than 12:00 PM Eastern on Wednesday September 1.

Questions? Let me know.

Look forward to hearing from many of you before September 1.

Go Paul's Posse!

Triathlon Triumphs

2010-08-15T09:06:00.014-04:00

Several members of Paul's Posse celebrate completing the 2010 New York City Triathlon. (Photo Courtesy of Debra L. Rothenberg Photography.)

Although I've had triumphant multi-trasking moments (serving my kids Goldfish crackers while taking a shower, for example), during my very early morning arrival to the athlete's transition area for the New York City Triathlon I could barely walk and speak at the same time. I should have thought of that before I dropped and shattered my iPhone while simultaneously trying to text my sister and open a bottle of water.

My iPhone busted Around 5 AM as I was walking into the Triathlon transition area.

Fortunately, the busted phone was not emblematic of the day ahead. In fact, it was akin to a bird shitting upon one's head and resulting in good luck since the rest of the day was nothing short of inspiring.

Brutal emotional multitasking did accompany every moment of the festivities. It even feels strange to use for the word festivities to describe it. For any true sense of joy in having so many people gathered to honor Paul and do something meaningful for those fighting the Amyloidosis fight was intertwined with a continual, sorrowful reminder that Paul wasn't there to see it. 40 or so of us decided to do something as bold and unexpected as a triathlon because of something terrible, and Paul being absent hung in the air like the 98 degree humidity.

Despite all of that, Paul's Posse took the Ghostbusters approach to the challenge before us on July 18: we came, we saw, we kicked its ass. And the team member who personified that attitude was Mary Brougher.


Mary swims the Hudson. (Photo courtesy of Kevin Brougher)

Mary was the first person to commit to joining the team when I decided, with the help of some fantastic friends, to organize it. Mary had never done a Tri. Her work and travel schedules are insane. But I'll never forget her post to my Facebook wall proudly declaring that she was in. Mary finished the Tri in just over 3 hours. I watched her transition from bike to running and she was flying. And throughout it all she was humble, generous and classy.

These folks have some serious task juggling skills as well.

Dakila, Sabastian, and Elke. Wonderful friends. (Photo Courtesy of Kevin Brougher)

Dakila and Elke are married and raising little Baz in New York City. They participated in a relay team, along with my cousin Barb (pictured below, just after battling the Hudson), and managed to not kill each other like those people on the Amazing Race. Dakila also was among the biggest team cheerleaders throughout the weeks leading up to the race with some fantastic video blog posts highlighting his training and trumpeting our cause.

Come back to NY, Barb!

Speaking of family connections within Paul's Posse, check out my friend Dave and his dad, Dave Sr.

Dave, Sr. and Dave, Jr.

When Senior heard about Junior participating in the Tri as part of a relay team, he promptly decided to do the whole race. I love competitive families.

Which reminds me, let's give it up for my family. I was so lucky to have so many of them there racing, cheering, being there. Like they have been throughout my life, like they have been since we lost Paul.

A Lambo Family Reunion, minus the egg toss. (Photo Courtesy of Kevin Brougher)

My cousin Joyce always reminds people that I was the flower girl in her wedding. I always remind people what a profound and positive impact she has on my life. (Photo courtesy of Kevin Brougher)


My cousin Krissy who, thanks to Facebook, I recently reconnected with after so many years, and my heroic sister Jill who had the toughest triathlon job of all, entertaining my son Max for countless hours. (Photo courtesy of Kevin Brougher)

Paul's mom, Sandy (pictured above, center), proudly wore her Paul's Posse shirt and cheered us on. (His dad was there too.) (Photo courtesy of Kevin Brougher)

AJ's story definitely warrants its own post but here's the condensed version.

AJ with his parents. (Photo courtesy of Kevin Brougher)

One day I got a Facebook message from a stranger named Adam (AJ) Patrick who lived in Cleveland. When he saw that I was putting together a Triathlon team he explained that he could help. I didn't realize how much. I had to re-read his email a few times because it said that he had had Amyloidosis, went through a stem cell transplant and was now in remission. Sounded like Superman. I learned from his dad that AJ insisted on having a stationary bike in his hospital room during his stem cell recovery. Oh, and although he was only supposed to do the cycling leg of a relay team, he ended up doing the entire race when both of his relay teammates had medical emergencies. Yes, he is Superman.

I work with some very wonderful people at John Wiley and Sons. Here are some of wonderful-est:

Lea (w Joseph), me (with Max), Lisa, Justin, Nick (Photo courtesy of Kevin Brougher)

Here are some more Paul's Posse shots that I love. Unfortunately, the entire team isn't represented...but I tried! (Sorry for all the Facebook photo theft. I tried to credit everybody where appropriate.)


Leslie triumphant at the finish line.

Andy, one of the day's heroes, looking very Transformer-esque. (Photo courtesy of Patrick Batchelder)

Jamie, Liz (a Doctor and triathlete--talk about multi-tasking), me, Paula, Bill, Ken, Max, Mary, Dakila, Barb, Krissy, Kelly (who ran past me so fast in Central Park that my hair flew back) (Photo Courtesy of Kevin Brougher)

Paula, AJ, Mary and Max (Photo courtesy of Kevin Brougher)

Carly and Lisa swap war stories about the water.


Triathletes watching and waiting for their swim leg to begin. (Photo courtesy of Kevin Brougher)

Michel's kids made fun of him for taking swimming lessons in preparation for the race. He handled it in stride.

Vinni and Mary, two of Paul's Posse's elite ladies. (Photo courtesy of Kevin Brougher)

Erik looks ready to do another triathlon.

Ram during his tranformation from cyclist to runner.

Are you trying to hail a cab, Laura? (Photo courtesy of Kevin Brougher)

"Just a bunch of dudes about to swim, and their nipples." (Caption and Photo Courtesy of Mike Lawrie)

Mark points to his Amyloidosis Awareness bracelet as he finishes the race. (Photo courtesy of Mark Von Holden and Amy Sussman)

Max made sure I didn't quit. He always does.

A Letter to The Famous and Influential

2010-07-16T11:34:00.007-04:00

Dear [Insert Names of Famous, Influential People Here],

If you ever walked a red carpet or attended an event with other cultural luminaries in New York City between 2004 and 2008, my husband Paul Hawthorne probably photographed you. And he probably came home and told me all about you. Not because he was a gossip or had much interest in the world of celebrity. But because I was the pop culture addict in the family and would often grill him about what you all were "really like." He usually shrugged and said something brief like "She's hot" or "He was cool. Very down to Earth." On the rare occasion he cursed some of you out for being late or a bit standoff-ish. (Yes, I'm omitting his choice words here.)

See, Paul was a former Navy guy who trained with the Combat Camera group. After years of shooting news and sports, he ended up in the more stable world of entertainment photography where he approached every red carpet event like a photojournalist. He always went out of his way to capture something unique about you and your peers. He was blissfully unaware of Hollywood gossip but was keenly aware of seizing the moment when he was photographing a breathtakingly beautiful person, a gorgeous fashion design, or just a spectacularly rare, candid split-second in time. Like a faux punch exchange between Mohammed Ali and Denzel Washington. Like Harry Connick, Jr. doing a split in mid-air during a Broadway curtain call. Like a laryngitis-plagued Jessica Simpson being stunned silent when she realized she had won a car. Like being in the presence of his idol Walter Cronkite.

I could tell you a lot more about Paul but you are likely pretty busy. So, I'll summarize his sad ending. Paul died at the age of 41 from a rare blood disease called Primary Amyloidosis. It's hard to pronounce. It's hard to diagnose. It's rare and complicated and for reasons unknown to medical experts it causes a person's vital organs to fail. Four months after diagnosis, Paul lost his battle with this surprise-attacker of a disease. Ali's punch x 5000 wouldn't sufficiently describe how determined Paul was to get well. Some opponents are too relentless.

In an attempt to help others with Amyloidosis, to honor Paul, and to celebrate all of the photo-worthy moments that were his life, I have formed Paul's Posse, a team of 40 people who will be competing in the New York City triathlon this weekend. It would be so helpful if you could get the word out about our cause. Anything you can do. Tweet it. Tell your friends, your co-stars, your connections in the medical community about Amyloidosis and Paul's story. You can send them to amyloidosis.org for information and instructions for team donations. Any or all of the above would mean the world to me and to everyone in Paul's Posse.

Warm Regards,

Amy

Angel

2010-07-05T23:36:00.009-04:00

My guardian angel, if you believe in that sort of thing, came in the form of a server at Dairy Queen. I was there in an attempt to distract my children and myself from the heat, from the fact that Lowe's was sold out of portable ACs, from the long hours that remained of this last day of the long weekend.

Max ordered an icey lemonade and Lucas a chocolate soft serve, which I ended up eating. A tiny strip of shade had enticed us to sit on the curb in front of our car. Lucas took one lick then became obsessed with the garbage can, picking up pieces of city grime from the ground and discarding them over and over again through the garbage can's stinky swinging door. Each time, I gave chase and tried to block him from reaching his hand right into the last customer's abandoned half of a parfait. Max looked through his new Spongebob book, his face a fresh beet.

Then, there she was. She walked out of some unseen back door to the DQ and smiled brightly at me from under her uniform sun visor. "How old are your boys?" she asked. I was a bit taken aback because she entered our crazy little dirty curbside ice cream circle of mayhem as if it was a meeting we had been planning for weeks.

"I have two girls. My sister has two boys," she said. "It's really exhausting, isn't it?" I nodded. "Whether they're girls or boys, it just gets tougher too"...a rare honest comment that somehow made me feel less like this Dairy Queen parking lot on a 95 degree day in my grimy city was indeed hell.

She mentioned that she was a school teacher. She had worked at Dairy Queen for 25 years during the summers. She asked if I was a stay-at-home mom. "No. I'm a widow. I work full time," I said. She just nodded, again like this was not news to her. Perhaps the giveaway was my stained clothing, lack of shower, any smudged dirt that might have ended up on my face as a result of monitoring Lucas's garbage can game. Or maybe she just knew.

She stopped Lucas from pulling out more dirty plastic spoons from the garbage can and offered to wipe his hands off with a soapy cloth from inside. I said I could clean him up with the baby wipes in the car. More customers started arriving. She mentioned that she should go but then quietly waited with Max as I chased Lucas and stopped him from speeding toward the road.

I methodically loaded the kids into the car, answering each of their questions about the Spongebob special, whether we were going somewhere else, whether I could please roll every window down for the entire ride home. She smiled and listened and asked if I needed any help. I shook my head and thanked her while forcing Max's seat belt buckle into place.

Then she went back to work.

Plus One

2010-06-22T00:26:00.005-04:00

Here is a shot of Paul and me not long after his two-day stem cell transplant procedure was completed. On the wall behind me was the stem cell calendar that his medical team had put together. It referred to the days preceding the transplant as negative numbers counting down, (day "-7" being one week before his transplant process was started) while the days afterward were positive numbers counting up. So here we were on day "+1," relieved to be in the positive column. I love how determined he looks, hoisting a finger when he barely had the strength to do even that. He was ready for whatever fight was required to make it to day +2, +100, +200, or, as today would have been, day +638.

.

A Second Mommy's Day

2010-06-21T01:01:00.002-04:00

It was the usual post-bath time mayhem tonight. I attempted to dress the kids in their pajamas, amazed at their pronounced tan lines after a sunny-days-chasin'-the-clouds-away outing to Sesame Place. When they asked if they could watch Spongebob, I mentioned that they could but we should first call their Pop Joe and Pap Bill to wish them a Happy Father's Day.

Max stopped jumping on the bed naked, turned to me with sudden seriousness, and said, "Is today Father's Day?" I nodded while wrestling his brother into a diaper. He waited for me to get Lucas dressed then went on. "Well, mommy, you know what I like to say. Today is actually a second mommy's day for you." Then he hugged me and wished me "Happy Second Mommy's Day." I hugged him back and told him that was very sweet of him to say. And that his dad would be proud.

Oh, how kids can surprise us. After all, this heart-warming statement came from the same kid to whom I said the following just a few hours earlier on the way to Sesame Place: "I swear, Max, I will flash my lights to that state police car and explain to him how you are behaving recklessly in a moving vehicle and potentially jeopardizing the safety of your entire family not to mention the other families driving with us today on the New Jersey Turnpike!"

Ignoring what it says on the calendar, I would like to wish everyone a Happy Father's Day, Second Mommy's Day, Widow's Day, Parents' Day, and Threaten-One's-Children-with-Cops Day. And to all a good night.

Bruised and Battered

2010-06-09T22:23:00.002-04:00

My 5-year-old son Max was accidentally hit with a golf club at his school's family picnic outing. He and some pals were playing miniature golf. All was fine one moment then somewhere around hole #7, he got smacked right near his eye socket, the kind of bruise Larry Holmes used to deliver when I watched boxing with my dad as a kid.

I was about 100 yards from Max when the putt-putt-pandemonium occurred, oblivious to all of it, watching his brother Lucas repeatedly conquer the playground slide. It was a rare moment of semi-calm. Lucas was so proud and confident and free with each ascent and descent. Then, suddenly there was Max, at my feet, crying through his multi-colored shiner, asking me to do one thing: "Hold me, mama."

His kindergarten teacher and I iced his wound and tried to make him laugh. "Pop Joe is going to think you were in a boxing match." It didn't work.

I told him about how I was hit in the nose once with a hockey stick during 6th grade gym class. How one of my best friends hit me by accident. He was completely rapt in my story, asking questions, seeking commonalities between our accidental childhood face batterings. "Did it hurt really bad?" Yep. "Did it bleed?" Yep. "Were you mad at your friend?" Yep. At first. But only for a little while.

As he asked me each question, I remembered the site of blood on the speckled linoleum floor in the school nurse's office, the agony of waiting for my mom, how much my pulse was pounding in my ears.

During Max's initial foray into this life, he's really taken his hits, metaphorically speaking. Losing his dad is an undeniably formative, bitter and harsh fact for him, one that his life will always boil down to. This new golf club bruise is seriously ugly, but so easy and simple to deal with by comparison. Kid swings golf club. Nearby kid gets hurt. There's some crying and anger. Then mmoents later, the two kids hug and are off to play and on day 3, the bruise is already looking a hell of a lot better. To waive goodbye to your dad one morning only to be told several hours later that he is dead...that's a wound that doesn't fade magically as scabs form and colors change.

I want to thank the kid who accidentally got a bit overzealous with the golf club the other day. He reminded me of my roles as ice pack holder, bandaid administrator, shoulder offerer, cuddler, reassurer, listener, question-answerer, and kindness offerer. These roles are ever so important both when the bruises and scratches are full blown and fresh, and when they are internal, undetectable and continuously growing and morphing.

A Rallying Cry for Paul's Posse and the Amyloidosis Foundation

2010-05-18T00:12:00.002-04:00

"Paul's Posse" is a team of 43 people who will be competing in the 2010 NYC Triathlon on July 18 to honor my late husband Paul Hawthorne and raise money for the Amyloidosis Foundation. Some brave folks will do all three legs of the Olympic-length event. Other less insane but equally committed team members (like me) are splitting the duties as part of a relay team.

What does this have to do with you? Paul's Posse and its team members ask that you do one or both of the following things:

Make a donation to the team's cause and help the thousands who are living with Amyloidosis and its many treacherous, unpredictable, and often insurmountable manifestations. Any amount you can manage will help raise awareness, fund research, and support and educate those who are navigating the complex waters of Amyloidosis care and treatment options.
Get yourself to New York City early on the morning of Sunday July 18 and cheer on the team as well as the thousands of others who participate in the NYC Triathlon. You can watch the swimmers jump into the Hudson, stand along the West Side Highway as the cyclists fly into the Bronx, or wait at the finish line in Central Park to celebrate the team, Paul, the race, and the overall sense of doing something good for the Amyloidosis community and its many brave patients, care givers, doctors, nurses, researchers and others.

Organizing this triathlon team has been a simultaneously hollow and satisfying experience. The satisfying part is in realizing how Paul still has the ability to rally people together. He's the one who really did the organizing. The hollow part is that Paul will not be here to see it. I didn't think it was possible, but I actually miss him even more as time passes. But as my aging body is cursing out the brutal hills in the northern part of the Central Park loop (which I haven't run since I was 20-something), I'll be channeling Paul and his refusal to ever give up, even at the very end.

So I guess he will be there. And I hope you can be there too.

Photography Show

2010-05-05T00:00:00.002-04:00

These 15 kindergartners left for spring break 2010 armed with cameras. As part of a class assignment, they took pictures of stuffed animals hoisted in trees, romantic hugs between parents, earthworms, cherry blossoms, baby sisters and brothers, and even themselves.

The resulting art exhibit, "What Makes Us Happy: An Exhibit of Original Photography by the Students of Kindergarten B at Primary Prep Elementary School," was held on April 30 and raised money for the Amyloidosis Foundation. My son, Max, was one of the artists.

The idea for the show came about on random night this past winter. The one year anniversary of Paul's death had passed almost two months before. I was unable to sleep, thinking about the passage of time and worrying about my oldest son Max, now 5, having difficulty remembering his dad. It's hard to know what sort of memories he has of him. Then I remembered something.

During Max's 3-year-old pre-K class, while Paul was still alive, he dressed up like his dad for a picture that the teacher turned into a father's day card for Paul. In the picture, Max is wearing dark glasses, all black clothes, a newsboy hat, and has a camera around his neck. It occurred to me how much of Paul's identity was in his profession as a photographer. And how much Max, even at age 3, identified with that.

So, I emailed Max's kindergarten teacher, Miss Stevens, and floated the idea of a photography art show in Paul's honor. She took it and ran with it. Parents pitched in to buy disposal cameras for the kids. Two of Pauls' friends and professional colleagues Brian Ach (who took the awesome b&w shot below) and Michael Loccisano, conducted a photography lesson. And the kids went off on spring break with cameras in hand.

The results were fantastic. They captured such an eclectic mix of images and captioned their favorites in a way that only kindergartners can. I can't think of anything that would have made Paul more proud.

The show itself was wonderful. But what was particularly wonderful was watching Max talk so openly about his dad's illness and death. The photography show enabled him to do that with candor and honesty. It also taught him about giving, about creativity, and about how his view of the world, along with all of his classmates' views of the world, really mattered. That's what photography is all about, right?

Positively Done

2010-03-15T23:18:00.005-04:00

Yesterday, I sat in the recliner where Paul pretty much lived the entire last 2 months of his life and I looked at my kids and felt....lifeless. I almost wondered if Paul had made his spiritual presence known when I looked to these two tiny boys, weighing in at a combined 57 pounds, and felt a tragic distance between them and me. Like they were so far away from where I was in my dark and self-pitying place. The place where I resent nuzzling couples in the grocery store line, or Sandra Bullock with her Oscar and her hot husband and her millions, or even the romantic idealism of bad 80s ballads like "Endless Love" by Lionel Richie and Diana Ross for interrupting my compulsive car radio station scanning. I sat there in that damn recliner -- bought right off of the showroom floor at Raymour and Flanigan because Paul had to have it right away, because lying flat meant that he couldn't catch his breath -- and I reclined away while my kids watched TV. And I felt a tiny fraction of what he must have felt and couldn't fully express. Reclined. Lifeless. Exhausted.

The day before yesterday Lucas ate blueberries and raisins for breakfast. He sat in his highchair rapidly plucking them off of his tray and into his mouth. I was happy for a few seconds, amazed at his ever growing fine motor skills. Then, his hand motion reminded me of the night that Paul stopped breathing at home. He was talking to me then suddenly his eyes went glassy and he started pinching his thumbs to his forefingers like he was trying to pick something out of the air. Then I ran to get his dad. Then he spoke to his twin brother Philip who wasn't there. Then silence for a few seconds. Then the 911 call. Then he was back with us, my voice shrill and shouting into the phone. First panic then relief.

Enough relief that I was able to catch a few hours sleep that night and delude myself into thinking that it would be fine if I went to work. It would just be a normal day because it had to be. It kind of was, if you count fatal illness as normal. All of his last days were normal in some twisted sense. If you count talking to cardiology experts at Columbia between tech project status update meetings and hearing the words "you know how sick your husband is, don't you?" as normal. If you count decorating a plastic Target Christmas tree with your 4-year-old one minute while catching your 41-year-old, black belt husband as he passed out from attempting to stand up too quickly the next minute as normal. If you count having a six month old who you barely notice or see on a daily basis as normal.

Now, over a year later, the new normal is remembering all of these things and so much more. And hating and resenting most every memory.

Why Are You In My Dining Room, Yoko?

2010-03-04T00:16:00.012-05:00

About five years ago, I persuaded Paul to make some prints of his work to decorate our dining room. George Clooney, Yoko Ono, Mohammed Ali, Denzel Washington, and Angelina Jolie ended up alongside each other facing us through everything from Max's first Jackson Pollock-esque tossing of pureed carrots and green beans, to late night harried Chinese takeout dinners, to weeks of depleting struggles during Paul's illness.

Clooney was more Cary Grant than Cary Grant. Ali fake punched Denzel. And Angelina's back-of-neck tattoo reminded us to know our rights, as the flash bulbs twinkled around her. I picked all three of those images for the wall. Yoko was the only shot that Paul picked. I mocked him a bit about the choice. "Do you have to torment me by putting Yoko Ono in my dining room? Why don't we change it to 'the annoying celebrity wall.' Got any shots of Kanye West? Paris Hilton? How about Gilbert Godfried?"

I found it so surprising when he explained that he loved photographing Yoko, how he was particularly proud of that shot with John Lennon's famous visage on a wall in the background. He said he found it remarkable that Ono ever made public appearances at all since her husband was gunned down by a nut job. He had such admiration for her of all people, a celebrity who, let's face it, rarely evokes admiration.

One article I found by feminist blogger Cara Kulwiki summarized sentiment about Ono in this way:

"...because 'everyone' hates Yoko Ono. She’s a mentally unbalanced, scheming, money-grubbing, castrating bitch. Oh, and she broke up the Beatles. Or so they say."

As recently as today, there was blogosphere outrage at Ono over the fact that John Lennon's image appears in a European car commercial. Still polarizing after all these years. "Shame on you, Yoko" was the YouTube comment with the least vitriol.

What's with the Yoko hate? Funny, until I joined the widow club, I didn't give much thought to Ono as a widow and pretty much bought into the negative sentiments that surrounded her, although I didn't feel vested enough in the Beatles to harbor any serious feelings about it. She was sort of a silly punch line in my head, like the Barenaked Ladies song from my college days, You Can Be My Yoko Ono/You Can Follow Me Wherever I Go.

So, the public, including me, is largely prone to thinking of Yoko as more crazy-ass Beatles-breaker-upper than empathetic widow. Yet, at 46 she became a widow very suddenly. Her son Sean was 5 years old when John was shot. Five. That's young. Max was 4 when Paul died. Lucas was 6 months old. Yeah, our lives are so dissimilar its almost laughable. My apartment is certainly not the Dakota. My art skills are on par with my kids. The only musicians I ever dated were far from iconic. Yet when I read this comment she made to People magazine about the aftermath of Lennon's death, I found myself empathizing with the woman rather than scoffing at her punch-line persona:

"I looked at [Sean], and he looked at me, and there was a strong connection...Before it was always John and Sean. Now, Sean was an individual. Just standing there. Tiny. So courageous. I fell I had to be strong—that he would be like an orphan if I wasn't there."

Although I know almost zero factual information about Yoko's art, her music, her influence on the most famous Beatle, I now realize how much of what Paul thought of her must be true. (My Paul. Not McCartney. Jeesh.) She became a widow at the hands of a crazy-ass and yet she somehow kept going, raising a kid, moving forward. Did/does she cash in on her husband's fame and death? Oh yeah. Did cashing in define her? Not as much as suddenly becoming a widow at 46 did.

A Few Thousand Words

2010-02-06T12:59:00.010-05:00

We have always been very still-photo-centric in the Hawthorne house, for obvious reasons. However, I actually did take quite a few home movies during the "first child era" of our marriage. (One played with the kid while the other videotaped until kid screamed or needed a diaper change.) Sadly when Lucas arrived and we had not one but two screaming kids, the video camera spent a lot of time neglected and lonely in its bag with barely a noticeable battery charge.

Needless to say, losing Paul had me yearning to not only hear his voice (which I have preserved from answering machine message to iTunes library) but to see him alive and kicking, young and healthy, doing the silly goofin' that he so often did. So, I got up the courage, with my friend Matt's help, to connect a fire wire to my Mac and import videos from camera to computer. Wow, was I thankful that I did it. The result is a 6-minute video montage of Paul which can be viewed below. Watching all the footage and selecting the funniest and most classically Paul moments was very joyous for me. I hope they bring some joy to all of you. I have a feeling this video could go viral and bring the "arm fart" trick back to its glorious heyday. Enjoy!

Paul: Video Highlights from Amy Hawthorne on Vimeo.

I Hope It Was Better Than Any of These Things

2010-01-25T23:46:00.000-05:00

I hope it was like seeing a quick, bright rainbow-y reflection of the sun as you approach the New York side of the Holland Tunnel on a crisp, clear morning.

I hope it was like you described winter camping: the beautiful newness of snow; the air feeling tingly in your lungs and on your skin as steam billows out of your mouth.

I hope it was like when Lucas was born, a surprising but familiar love, something to wrap your arms around instantly without fear, without confusion.

I hope it was like Egypt, Maine, the Appalachian Trail, London, Vermont, and Sicily all at once.

I hope it was like entering Yankee Stadium with Max in your arms, Jeter rounding third, the crowd going flippin' wild.

I hope it was like when you were young and on vacation with your family, thinking you were lost for a few terrifying seconds but then -- after spotting your mom and dad -- realizing you were safe and being breathlessly happy about that.

I hope it was more elating than the biggest of O's.

I hope you were smiling, the way you always did when you saw an old friend or an old family member, or an old, familiar anyone or anything.

I hope it was like the "Miracle" that Dave Grohl sings about.

I hope it was better than any of these things.

Good Question

2010-01-11T22:48:00.007-05:00

A few days ago, I was reading Lucas his favorite book, Super Why: Twas the Night Before Christmas. We came across a page featuring the title character Whyatt, aka "Super Why," with his entire family on Christmas Eve. Lucas recognized every character and proudly began to identify each of them with dramatic finger points. Well, almost every character.

"Baby Joy!" he exclaimed proudly.

I applauded. "Wow. Good job. Whose next?"

"Jack!" he yelled, pointing to Whyatt's grungy but striking older brother, Jack Beanstalk.

I gave him another thumbs up and encouraged him to keep going.

"Mommy!" he said pointing to Whyatt's remarkably young-looking, seemingly stress-free mother. He said her name with so much gusto he spit on the page while making the "m" sound.

"And Whyatt!" Yes, last but not least, there was the show's protagonist who I think Lucas sees as his alter ego.

Then, he pointed to Whyatt's dad and said nothing. He looked at me blankly. The laughter and shouting of a moment ago were now replaced by confusion. "That's Whyatt's daddy," I said, my ears ringing as it dawned on me that my 20-month-old's growing vocabulary -- and his entire toddler reality -- did not contain the D word.

Fast forward to yesterday. Max decided to rearrange a few photographs in our living room, moving a photo of Paul and him from one side of the TV stand to the other. He and I talked about the circumstances surrounding the picture--that St. Patrick's Day afternoon in 2005 when Paul decided to take him to the parade in the Baby Bjorn but then returned home quickly when the bagpipe screeches, fire trucks, and high school marching bands rattled his 6-month-old ear drums to the point of terror.

A few hours later while changing Lucas's diaper, he turned to me and asked, "Mommy... Where daddy go?"

I quietly stated the truth to him while reaching for the Desitin. "Oh, Lukie. Daddy died." He smiled at me and repeated the question.

I smiled back.

After the Desitin was applied and the diaper secured, I planted a big kiss on his cheek, carried him to the living room and turned on Mater and the Ghost Light for my two sons. They laughed and laughed.

Memorializing the Memorial Service

2010-01-04T01:52:00.005-05:00

This is how I started '09. Paul's Memorial Service. It was held on January 10th of last year and it felt essential to do it sooner rather than later. Now it's January 2010 and I'm still memorializing. There are no ceremonies in my near future. No planning the program, the music, the food. But commemorating.

Instead of reading a hastily written eulogy before parents, coworkers, new friends, strangers, and old friends on a snowy night in an old church in my New Jersey neighborhood, tonight I see a slow motion memory of Paul putting Max in his car seat. The way he tightened the belt just perfectly, handed him a toy, straightened his ball cap and gave him a kiss on the cheek. Each motion so matter of fact and natural. The turning of the ignition key and we were on our way somewhere.

These days, I struggle with the buckles of both car seats, the straps hopelessly twisted. I repeatedly look in the rearview mirror to make sure Max isn't feeling car sick -- a problem that escalated during Paul's illness -- and I see both Max and Lucas looking out the window, or sleeping, or staring at me or nodding their head to whatever is playing on KRXP and I think...these are two boys who will become men without knowing their dad.

So I find an anecdote, a snippet of a story to serve as a quick commemoration. "Remember when daddy yelled at that lady for throwing trash on the ground at the gas station? He was not a fan of littering, your dad." But it's hasty and it falls flat, just like the words I typed on the afternoon of January 10 last year, my fingers numb against the keys. The attempted anecdote ends up being a pop-up foul at best. It doesn't replace Paul. It's not him, in the flesh, alive, screaming to "pick your shit up off of the ground and throw it in the garbage can!"

You're so alive and vibrant and playing an emboldened litter vigilante one minute and the next you're dead and gone reduced to inadequate anecdotes whose details fade with time. Ain't life a shitty paradox?

I spent many late nights in 2009 writing this blog, thinking I could capture him, us, all of it for the kids, for myself, for anyone willing to read. But flat and incomplete is how it often felt and continues to feel. And that is why I want that January 2009 memorial service back and I want the spirit of it to somehow continue in perpetuity. I want everyone together again so the collective voice and stories and heartfelt pain and celebratory memories can be right there in front of me, in the flesh, alive and kicking.

And I thought widowhood would be easier after 1 year than it was after 1 month.

A special thanks to Paul's friend and colleague Jemal Countess for taking the above photos at Paul's Memorial Service. View more memorial service photos.

I Suck at Math. The Triathlon Team Roster for "Paul's Posse" Is Far Greater Than 43.

2009-12-30T23:54:00.000-05:00

Every kid who has lost a parent to Amyloidosis...
every spouse who has lost the most important person in their life to Amyloidosis...
every parent who has lost a son or daughter to Amyloidosis...
every brother or sister who has lost a sibling to Amyloidosis...
every friend who has lost a friend to Amyloidosis...
every Amyloidosis warrior who is still fighting the fight like Doug and Karen and Chris and Gunner and John and so many others...
everyone who is just receiving his or her Amyloidosis diagnosis, wondering what hit them...
every doctor and researcher searching for a cure for Amyloidosis
every nurse and caregiver who cares for those who are fighting Amyloidosis
everyone of you who is reading this...

You are all Paul's Posse.

More about Paul's Posse.

More about the Amyloidosis Foundation.

More about the NYC Triathlon.

Sponsor Paul's Posse by making a donation here. (Secure an end of year tax break now before you start drinking the bubbly tomorrow night and forget to do it.)

Thanks for reading and for doing what you can.

Have to Believe We Are Magic

2009-12-24T23:35:00.003-05:00

I'm visiting my parents for the holidays where the most noise I hear at night is the sound of the dishwasher shutting off. Beautiful silence.

Thanks to the quiet snowy setting and the generous impromptu babysitting help of my parents and my sister, I've caught a bit of rest and have even had an opportunity to read the paper once or twice. Bonus: my dad gets the Wall Street Journal which I would never have a chance to read under non-holiday circumstances. It was in the WSJ that I came across Shirley S. Wang's article "The Power of Magical Thinking." According to Wang, studies are pointing to the importance of childhood imagination in human development, particularly in laying the groundwork for future adulthood understanding of reality.

"Whenever you think about the Civil War or the Roman Empire or possibly God, you're using your imagination...it is absolutely vital for contemplating reality, not just those things we take to be mere fantasy," says developmental psychologist and Harvard professor Paul Harris in the article. Harris and other scholars have found that age 5 -- Max's age -- is the prime development point for adamant belief in Santa Claus.

"A 5-year-old has the cognitive skills to put together the pieces of evidence, but because the pieces are misleading, he or shoe comes to the wrong conclusion," Wang writes. Wrong? Well, I wouldn't say that.

Max is sleeping right now and I can only begin to fathom the high def dreams he is having about reindeer, the ginger snaps we baked for Santa and how Santa is going to manage to eat them along with so many other kids' cookies, the remote control dinosaur he really, really wants, and, of course, the new Mario and Luigi Nintendo DS game. His magical thinking tonight is certainly dialed up to 11.

I wonder what type of magical thinking he has engaged in about his dad over the past 369 days? Is Paul like Santa Claus to him now, a mythical figure who he remembers going to a Yankee game with, or to the Circus once? Does he remember the guy in pictures, making an exagerated "P.U." face while changing 5-day-old Max's diaper? Or does he paint his own fantastical picture, one of his dad up in heaven wearing a super hero cape, floating from cloud to cloud snapping pictures of everything that is beautiful and delicious and wonderful around him?

If Max has had a year of magical thinking, I've had whatever the opposite of magical is. Anesthetized? Lost? Profoundly befuddled? My imagination was numb like the rest of me, as I put one foot in front of the other. I would have never imagined that at the end of the Aughts (what an appropriately ugly name for this decade), I'd be widowed with two kids and without Paul. Four months into the Aughts, I met Paul. Now, just a few days before their close, I am lost without him. Yet, I'm not prepared to be swallowed up by that feeling of loss.

When I was 17, I wrote an op ed for my high school newspaper about the collapse of the Berlin Wall and how the arrival of the 1990s would bring so much hope for the world. That was literally over half a life time ago. May a sliver of the magical, naive thinking of 17-year-old me make its way to the older, more exhausted 2010 me. My greatest hope is to begin this new decade with a harmonious blend of the fantastic and the real. And who will empower me to find this imperfect but peaceful balance? Why these two guys, of course:

The Famous...And the Rich People Who Photograph Them

2009-12-08T23:05:00.017-05:00

An excerpt from The Photographer Project by Brian Ach featuring Michael Loccisano.

(Setting: A tiny apartment on Manhattan's Upper East Side. 2001.)

(A young, radiant brunette holds a pile of flashcards before her dashing, ginger-haired husband with a goatee. He is wearing jeans and a Ben and Jerry's "Phish Food" Tshirt.)

HUSBAND

Oh, this one's easy. That's Jessica....um. Jeeeeessicaaaaa..... Jessica Lange!

WIFE

Sweetie, I can't believe you don't know that that is Cameron Diaz.

HUSBAND

Who?

WIFE

You are not serious.

(Laughter.
The wife flashes a photo of Hillary Duff. Husband looks at it, puzzled.
More laughter.)

This scene took place early in our marriage. Paul had just started his job as an entertainment photo editor for Wireimage.

The new gig required quite a different pool of knowledge than his previous stint as international desk photo editor at the Associated Press, where he had learned the faces, spellings, and political leaning of the the entire globe's most widely-known and most obscure political figures. Like Indonesia's Megawati Sukarnoputri, his personal favorite.

Now, suddenly Paul was at a busy startup entertainment photo agency where his new bosses asked him to get more familiar with the glossy Hollywood red carpet crowd. They tried to help him by making some flashcards for him to review as "homework."

We worked on those flash cards for a few weeks. His celebrity knowledge was helpless, really. And I was pretty proud of that. After years as a TV-addicted kid, then People magazine-addicted college student, then 20-something celebrity-sighting connoisseur in New York, I was struggling to make room for actual, tangible and useful information in my brain. It was tough to push aside the Access Hollywood-inspired clutter like the names of all the guys in New Edition, the scene-by-scene dialog of the Laverne & Shirley episode when they joined the army and went to Greenland, and a flow chart capturing the dating history of the cast of Ocean's 11.

So, it was refreshing that my husband had no idea who Tom Ford was and couldn't really tell the Hilton sisters apart.

Fast forward a few years and Paul suddenly was a walking, talking version of IMDB. His editing job at Wireimage lead him to start shooting on the side, and then, quickly he was a full-time, seasoned, entertainment photographer who could wax poetic to me about everyone from hip hop star Lupe Fiasco, to the cast of Days of Our Lives, to writer Horton Foote, to broadway chanteuse Kelli O'Hara. Now I was the one asking, "Who in the world is that?" over his shoulder as he edited his photos.

The most amazing thing that emerged out of this career trajectory for Paul wasn't the amusing irony of it all -- although there was a lot irony for my former U.S. Navy Combat Camera group lenseman and longtime news and sports photojournalist. No, the most amazing thing to me was the unique and wonderful camraderie that he developed with his fellow entertainment shooters. He would tell me such funny stories about these men and women whom he shared the red carpet with. They would commiserate about the long waits for A-listers, or the parties that promised big names but delivered the likes of Carrot Top instead. They got to know each other and help each other out when equipment gave out, or lighting was impossible, or TV cameras blocked the shot, or PR folks ushered a recently-freed-from-jail Martha Stewart off of the red carpet before any of them could snap an in-focus or in-frame shot. I have worked in my corporate new media job for almost 10 years, and I never had that kind of bonding with my coworkers, let alone my direct competitors.

This bonding became even more evident when Paul got sick last year and battled against the hell of amyloidosis. The support was remarkable. The concern palpable. There were visits to Sloan Kettering, fund raisers, and then there was photographer friend Brian Ach's book, The Photographer Project, an effort that he started when Paul got sick as a way to help him. To help us. His plan: a tribute to Paul and a tribute to the photography community that Paul felt so proud to be a part of. Brian rallied over 70 New York entertainment shooters and shot wonderful, candid, portraits of them, capturing what they were about as individuals, as people, as the hardest working, and the most misrepresented and misunderstood, men and women in show biz.

A few days after Paul died, Brian wrote a note on Facebook describing how he and some others held a vacant spot "on the line" for their friend Paul during a Kate Hudson movie premiere. Amongst all the insanity and jostling as the PR engine twirling its glittering stars in front of their scene-setting flash bulbs, they cleared a spot for their comrade. Where Paul had stood at so many a movie premiere, there was now a simple sign with his name on it. The enviable "#1" spot on the PR firm's list.

Here is an excerpt from Brian's note about that night. It still brings tears to my eyes almost a year later:

"We, as a small community, need to do things like this to remind us what really counts," Brian wrote. "And what really counts is NOT Kate Hudson giving us eye contact. NOT PR chicks in the way of our photo. Not C-list partial-reality show-made celebs interrupting our short time with Miss. Hudson by trying to steal the spotlight...

No, what matters is us. All of us. People with kids and wives and fiancees and bills and stuff. People who are sad. People in pain. People who have lost.

So, we try to come together to do a small thing to try and make it just a little bit better...we did something that, in its really small way, mattered. We miss ya on the line Paul. But we didn't forget ya."

The Photographer Project is available now.

Stormy Weather

2009-12-03T00:20:00.001-05:00

The rain is relentless right now and I have about 40,000 things to do before I go to sleep. I'm thinking about you and smiling, laughing, and remembering. Why? Because....

You had a playlist on your ipod called "dishwashing music."
You would spell the word "beagle" and actually mean "bagel." (I happen to love beagles and bagels, but I only but strawberry jam on the later.)
The pockets of your jeans were worn from the outline of your wallet but your wallet was always slightly askew in your pocket so, the worn outline was diamond shaped.
Your newsboy hats were so damn adorable.
When Max started calling you "Da Da," you started calling him "Son Son."
One time we got into a stupid fight because I couldn't find a rubber band and I blamed you for making the house so disorganized. After that, when I would get impatient or short with you, you'd make an exagerated face like you were a victim in a horror movie and yell "Rubberbaaaaaaands, Ruberbaaaaands" as you pretended to run away from me.
You would put homemade spaghetti and meatballs into a breakfast omelet.
When you moved to New York and were looking for work, you took a job as a janitor at my gym because you hated the idea of not working. I thought that was so admirable and loved walking into the gym as you were vacuuming and giving you a smooch, surprising everyone around us.
I think Max and Lucas take after you. They can bust a move and are sure to both be voted "best dancers" in their high school graduating classes.
We held hands and listened to Cassandra Wilson sing "Time After Time" live at Carnegie Hall. That was one of my most joyous moments because it made me realize that love had actually arrived in a very true, very unexpected, very beautiful way for us.

My Own Personal Radar Detector

2009-12-01T22:11:00.000-05:00

I got my first speeding ticket ever during my Thanksgiving travels. 75 in a 55 zone on 81 in Eastern Pennsylvania. I didn't even get a chance to tell the cop my sob story. He abruptly issued the ticket, stressed the importance of watching my speed during the busy holiday weekend and, poof, he was gone before I could say "37-year-old widow." As I drove away, I replayed Paul's voice in my head saying "Watch your speed through here. There are a ton of cops."

On so many levels, Paul was my personal radar detector.

If I was having a rough week, say feeling blue about being with my work projects instead of my family, a fax would arrive with no cover sheet but a single page scanned image of the bottom of Max's tiny 8-month-old feet. "Oh man, he had a blast standing on that fax machine," Paul would later recall.

One time when the fire alarm was going off in our building, I carried on about my business assuming it was another cigarette smoker lighting up anxiously just before exiting the lobby. Paul trotted to front door, smelled actual smoke, grabbed shoes for me and Max, knocked on everyones door on the top two floors, then lead us down the stairs.

He was good under pressure. He could act quickly. He had my back. He detected trouble and tried everything in his power to help me to avoid it.

During his last few weeks, I would get irritated with him when he told me to "watch my speed" as we drove to chemo or dialysis. "Ok, Mr Lucas," I would say sarcastically, referring to my high school driver's ed teacher.

It's certainly too late but, I take that back, Paul. You were not Mr. Lucas. You were just being you. And you were sick, and vulnerable and scared and my sarcasm and short fuse were hastily assembled masks for how scared I was. How scared I was that you actually might not make it. So scared, that I refused to let the thought enter me head, even as you were slipping away in the emergency room almost a year ago.

Now, my radar is way off. I can't detect much of anything except the moment in front of me and the aching memories of a year ago and beyond.

Support The Amyloidosis Foundation. Sponsor Our Triathlon Team!

2009-11-24T00:31:00.002-05:00

Thanks for voting to name our NYC triathlon team. Paul's Posse has a nice ring to it and I already can picture the totally rad retro 80s team tshirts.

The team's donation page is up on the Amyloidosis Foundation's website and ready to receive your donations.

If you've got your credit card ready, you can go to the team page now and sponsor our team.

But, wait. Perhaps you are wondering what the Amyloidosis Foundation does. Here are a few highlights. They fund innovative Amyloidosis research programs. They enable young doctors to train to become Amyloid physicians at Mayo Clinic and Boston University. They also recently funded Amyloidosis research studies at Brigham and Women's Hospital and Vanderbilt University. Last year, the foundation reached over 1000 physicians, educating them about diagnosis and treatment of Amyloidosis. They spread the word about Amyloid by publishing and circulating information to both patients and doctors on the latest developments in diagnosis and treatment. They produced an online informational video about the disease which is well worth a watch.

On July 18, 2010, 43 members of Paul's Posse are going to swim in the Hudson River, all slimey w. motor oil, bike the Bronx, which is not for the faint of heart, and then run our asses through Central Park in the stifling July heat. All to stop the scourge of a disease that took my husband's life. Please help us honor him and help others who are fighting the way he fought by donating what you can.

If you would rather give in other ways like helping with team training events, joining our cheering section on July 18, helping us get a team website going, or anything you can think of, please contact me right away. The team doesn't stop at our 43-person roster. You can be a part of it too!

An early Happy Thanksgiving to all.

I Promise Myself Sleep

2009-11-23T00:22:00.000-05:00

I will hopefully have some time to post more consistently starting this week. Lots of ideas and emotions are bouncing around inside of me as the holidays approach as well as the first anniversary of Paul's death. But for now, sleep calls. I hope I dream about him again. Even though it sucks to wake up and realize that the dream isn't true, it sucks to wake up anyway. See you on the REM side, Paul.

Help Name Our NYC Triathlon Team. Please Take the Poll

2009-11-16T23:30:00.002-05:00

There's a poll to the right. Please weigh in on our triathlon team name. If you don't like any of the choices, write in your suggestions in the comment field and I'll add it to the poll. Act quick. Poll closes on 11/20.

Dog Tags

2009-11-08T23:31:00.011-05:00

I can remember finding my dad's "dog tags" from the army when I was about 10 years old and asking him what their purpose was. I'm sure he put it in a nice, parental way but what I took away from it was pretty grisly: soldiers needed dog tags so their bloodied bodies could be identified in the most horrific of battles. The tags got wedged into a soldier's mouth after he died so that his jaw would be held in place when his body was recovered. Hence the notch. (Actually, that part about the notch is an urban myth, but at 10 it seemed ghastly and real.)

Dog tags with their deceptively simple key chain quality and their insensitive and casual nickname (Y'know, like the tags dogs wear on their leashes. Cute, right? Oy.) were a shiny aluminum reminder of death looming above like some kind of freakish Ingmar Bergman-inspired seagull. They were sturdy enough to survive the battles that soldiers didn't. They were these odd shiny objects that I happened to find one day as a kid and immediately wished I hadn't.

I came across Paul's Navy dog tags the other day when searching for a spare car key. I remembered how Paul recalled in a half casual, half somber way having to complete his last will and testament before leaving for the middle east in the early 90s. He was in his early 20s and the whole process, he admitted, scared the shit out of him. I thought of his later photojournalism career, and how he steered clear of newswire photojournalism jobs to avoid getting sent to the war zones of today. He wanted to stay alive, he told me, so that we could live a full life together, live to see our kids graduate into adulthood and beyond. My God, how we both wanted that.

Dream

2009-10-29T00:34:00.006-04:00

Paul was alive in my dream last night. Somehow, there was a medical miracle and I walked around the corner into a hospital room and there he stood, in jeans and a hospital gown. He was at his healthy weight with a 3 or 4 day old scruffy beard. I gasped. My stomach flipped. "Oh My God," I said. We hugged and I kissed his face which was warm and rough.

His skin looked discolored like drinkers whose face is red and ruddy from years of booze, but worse. Yet his eyes were so alive. So different than when he was in the ICU or at home for those six weeks afterwards when it was so hard for him to focus on much beyond the TV glow at 3 AM. Thank God, I thought in the dream. His eyes were tired but - my God - they were alive.

He was standing with someone in the hospital room. A doctor? An angel? Then I guess that other person disappeared. I suddenly was in a separate, adjacent room, hearing Paul talk to someone else through the wall, his voice muffled. Some nurses were with me and I kept telling them how I was so amazed that this was happening. They were apologetic, saying things like "We're sorry we couldn't bring him back sooner."

"That doesn't matter," I said. "He's here now." I was elated, confused, nauseous.

Flash, I'm back in the room with Paul. Amazed at this miracle. I try to make him laugh by saying something like "How are we going to get used to each other again?" He laughed and said, "Not to worry, baby-baby." His voice was weak, but he was alive and standing right in front of me.

TV Heartbreak or Dammit, I'm Missing Glee as I Type This

2009-10-21T21:57:00.008-04:00

My satellite TV receiver and my TV both kicked it this week. The receiver won't turn on. The TV turns on but turns off by itself after 5 seconds, or sometimes after 5 minutes. This was heartbreaking because, well, for the first time since Paul died I've actually been able to enjoy television. Like normal television. Television that doesn't have to be about illness or tragedy or death.

Last spring, I got caught up in the Grey's Anatomy terminal illness undertow. I wished I was Izzy because she somehow managed to have fantasy sex with her fiance who had died. I repeatedly listened to Meredith Grey's end of season voice over monologue on my DVR. I wrote what she said in my journal, her words framing the image of George and Izzy simultaneously flat lining:

"Did you say it? 'I love you. I don't ever want to live without you. You changed my life.' Did you say it?"

I became fixated on the fact that maybe I hadn't said that enough to Paul. That I should have given him more reminders of that, especially as his life was slowly falling away from him. Part of the death TV fixation was cathartic. Part of it was just plain painful and awkward. I mean, I was letting a fictional TV character put me on some kind of guilt trip. So TV and I parted ways for a few months.

Then, this fall, along came Glee. The singing, the hope, the underdog story, the satirical yet heartfelt and authentic lense on adolescence. I find myself laughing out loud when I watch it. I find myself getting weepy when the glee club kids sing songs like "No Air" or "Don't Stop Believin.'"

I am in love with Will Schuester, the sensitive Spanish teacher character trying with all of his heart to give the misfits of the high school glee club some glory, some purpose. Finn isn't bad either. The mother in me makes me think of him more as a "kid" than an object of affection. The scenes where he describes being raised by a widow made me laugh and made my heart heavy yet hopeful for Max and Lucas. Rachel is amazing. Her suffering at the hands of the popular kids is heart breaking, her lack of self awareness funny and infuriating, her smarts, her heart, and her voice just rad, awesome, and empowering. I wanna be her bff. And then there's Sue Sylvester. My God, Jane Lynch, the actress who plays Sue, is brilliant. Here's my favorite Sue Sylvester quote, said just moments after the glee club had performed a lewd rendition of "Push It" by Salt N' Peppa in front of the entire student body:

"That was the most offensive thing I have seen in 20 years of teaching, and that includes an elementary school production of 'Hair.'" I laugh even when I type that now.

Glee was on tonight but my kaput television and satellite receiver prevented me from watching it. However, imagine me tomorrow or the next day, after I download it onto my phone. I'll be watching it on the subway on the way to work. There's no doubt I'll be laughing out loud, or tapping my foot to whatever infectious song the glee club kids perform. Thanks Glee for making me laugh again and believe again.

Forward

2009-10-18T23:48:00.002-04:00

Today, a friendly, elderly gentleman at Dunkin Donuts struck up a conversation with me. I was able to calmly describe to him what happened to Paul. Yes, I said, calmly. No anger in my voice. No quiver. No awkward hesitation. Max and Lucas were right next to me, listening. Max even chimed in. "My daddy had amyloidosis," he offered, his voice assured but breathless, his eyes swimming with...what?...memories? This is progress. This is a step forward.

Two weeks ago, I attended a dinner for the Amyloidosis Foundation where I reconnected with many of the doctors and nurses who cared for Paul during his stem cell transplant and chemo. I was able to thank them for their compassion. I was able to hug them as I thanked them. I was flattered to hear that they remembered details about Paul, his wall of family photos next to the hospital bed, his love of the Steelers, how he photographed the doctors on their rounds. This is progress. This is a step forward.

Also two weeks ago, I started attending a "partners bereavement support group." I expected it to be me and a bunch of blue-haired 87-year-olds. Not so. Different ages and stories and backgrounds. All have suffered loss at the wrong time. All are desperate for answers and explanations. Some of us can't eat at all. Some of us can't stop eating. Some of us suffer heavily with guilt. Others feel they have suffered enough. All are there, every week, holding out for some hope, answers, reprieve. This is progress. This is a step forward.

Last week, I found myself tweeting, emailing and facebooking crazily to pull together "Paul's Team," a group to compete in the NYC Triathlon in 2010 to honor Paul and to raise money for the Amyloidosis Foundation. I was targeting 20 people. I got 43. This is progress. On race day, when we cross the finish line, it will be more than a step forward. It will be the start of healing.

Relax. There's a Relay Option.

2009-10-13T22:44:00.002-04:00

In my rush to get folks jazzed up to join "Paul's Team" by participating in the Nautica NYC Triathlon to raise money for the Amyloidosis Foundation, I undersold the relay option. Relay teams can consist of 2 or 3 members. Say you are a strong cyclist but the thought of swimming in the Hudson gives you the heebie geebies? Or perhaps you haven't been on a bike since you were 10 and wore pigtails but you're interested in working your way up to the 10K running distance. Let me know if you want to be part of a relay team and which leg(s) of the race you're interested in completing. Then, I'll try to connect you with some other folks who are also interested in participating as part of a relay team. So, email me ASAP and let me know.

Relay team cost is $325 for the whole team.

Swim, Bike and Run to Fight Amyloidosis

2009-10-09T06:43:00.008-04:00

"You may be hot stuff up in Harlem, or you may have the best tutu collection in the country. It doesn't matter. I don't have time for prima donnas...You're gonna have to work...You got big dreams. You want fame. Well fame costs. And right here is where you start payin' in sweat...So if you never had to fight for anything in your life, put your gloves on and get ready for round one. And mamma and daddy's little darlin' had better come out swingin.'"
-Lydia Grant, FAME

JOIN "PAUL'S TEAM" AND SWIM, BIKE AND RUN TO RAISE MONEY FOR THE AMYLOIDOSIS RESEARCH FOUNDATION.

The Event: Nautica New York City Triathlon. It is an Olympic Distance race consisting of a 1500m swim, a 40k bike, and a 10k run. (More details available at the Nautica New York City Triathlon site.)

The Date: July 18, 2010

The Reason: The Amyloidosis Research Foundation supports research for improved treatment options and earlier diagnosis of this rare, terrible disease that took my husband Paul Hawthorne’s life.

What is amyloidosis? In short, it is a rare blood disease with no known cause or cure. Mutant proteins form in the blood of amyloidosis patients causing damage to vital organs. Most doctors only encounter a tiny paragraph about it in medical school, leading to misdiagnosis, delayed treatment, and patient fatalities. It took almost a year before my husband Paul was diagnosed. Despite aggressive treatment by renowned oncologists, it took his life on December 20, 2008. For more details on amyloidosis, I recommend the Mayo Clinic’s overview page.

Cost: Registration is $245 dollars for individuals and $325 for 3-person relay teams. Each team member will be responsible for their own registration fee. Minimum fundraising goal for each individual team member will be $1000.

When is the Registration Fee Due? (THIS IS THE IMPORTANT PART): Charity teams must be registered by Thursday, October 15, 2009. In order to register the team, I will pay in one lump sum for all team members' spots. That means, if you want to participate, I need your $245 (or $325 per relay team) registration fee via check or paypal in hand by end of business by Noon on Thursday, October 15.

How to pay: PAYPAL to amy_hawthorne@yahoo.com or via check to Amy Hawthorne, 53 Duncan Ave, Apt 53, Jersey City, NJ 07304. Please notify me via phone or email if you are sending the check via snail mail so I can look out for it.

Team Name: I'm not sure yet. Anyone who comes up with the perfect name will be the team's honorary captain.

A note about relay participation: If you're thinking you'd like to participate in only one leg of the race, let me know and I can connect you with other interested folks who might want to form a 3 person relay team.

Five

2009-10-01T23:02:00.007-04:00

Max's birthday. We opened his gifts first thing in the morning. A paper shopping bag full of beautifully sprinkled cupcakes was delivered to school by yours truly. And, of course, there were the goodie bags: tiny pinball games and monster finger puppets and Nestle crunch bars and real-looking toy insects all nestled together in crinkly, noisy plastic. I wanted him to have a spectacular day. I wanted him to forget for a few hours the turmoil that started a few weeks before his last birthday and continues as 2009 shrinks to nothing. It worked. He was elated.

In this photo taken this morning, he had just been crowned by his kindergarten teacher. Line leader for the entire day. Hoister of the flag during the Pledge of Allegience. The birthday king.

I look at it and I think of how he came home from his babysitter's house the evening of December 20, 2008 and in the midst of playful chatter started climbing on me and asked "Hey mommy? Where's daddy?" My answer was a verbatim of what the social worker at the ER had told me to say.

I see this picture and I think of how many times in the past year I've had to be both Dennis Franz and Jimmy Smits to my four-going-on-five year old. How I find myself turning on a dime from compassionate and calm to impatient and intolerant.

I see this picture and I see Paul. I ache to tell him how Max has started to recognize some words in stories. How sometimes when Max gets dressed for school and smiles at me after brushing his teeth he looks astoundingly like his dad. How Max and Lucas now rough house and laugh like the brothers we daydreamed they would be way back when we first saw our second boy on an ultrasound screen. How on some days, sometimes more than once a day, I literally don't know what to do or say to our children because I don't feel capable of filling both of our parental shoes.

I see this picture and realize how big 5 is for all of us.

Join My NYC Triathlon Charity Team to Swim, Cycle and Run in Paul's Honor

2009-09-23T22:39:00.003-04:00

Greetings Blog Readers,

I am hoping to put together a team of 20 or so people to participate in the NYC Triathlon on July 10, 2010. It's a pretty cool event, it's not as difficult as, say, a marathon (or so I've heard), plus it will be a perfect tribute to my cycling-loving husband Paul's memory and help raise money for people living with amyloidosis.

Registration for charity teams is happening in mid-October so, at this point, I'm looking to quickly gage sincere interest from folks to determine if pulling together a team is feasible. Then, by mid-October I'll need to collect race registration fees from those who can definitely commit. After that, I'll work on organizing some team training sessions, maybe set up a team blog, etc. Some details...

THE RACE:
Here's some information from the NYC triathalon website:
FAQs

A Description of the Course

THE COST:
Registration is $245 per person.

FUNDRAISING:
I'm hoping to set a team fundraising goal once I know how many people are actually able to commit to the team.

THE CHARITY:
I've been in communication with some non-profit leaders in the amyloidosis community and want to do my best to put the team's funds toward some unmet needs of people living with amyloidosis. I"m not sure of the details yet but will certainly flesh them out soon.

So, please get back to me by Wednesday, September 30 via Facebook or at amy_hawthorne@yahoo.com and let me know if you are:

A) Definitely Interested
B) Possibly Interested
C) Can't Do It at This Point but Would Like to Donate or Help Out in Some Way

Thanks in advance for considering this.

Not Sure What to Say?

2009-09-21T22:33:00.006-04:00

I want to thank those friends who have said things to me lately about Paul. Just the other day, a good friend told me how much he missed Paul. How there are so many things every day that remind him of Paul. How when he's walking around the city, he often catches glimpses of people on the crowded streets whom he swears are Paul.

I"m not sure if it's the fact that the year anniversary of Paul's death is now only a few months away, but I believe that there are many friends and family aren't sure whether or not they should mention Paul or talk about the Yankees or Steelers or 30 Rock instead.

This hesitation is part of what is so isolating about my current state of widowhood. In my mind, Paul's illness, his death, all of it is still raw and recent, even more so now with various anniversaries, like his transplant anniversary on September 18, which was this past Friday. One year ago, Paul and I were talking about how we would celebrate on September 18, 2009, his new "birthday." So while I"m struggling with the cruel irony of that, folks hesitate to share their memories and their pain over Paul's loss because they think that maybe they're pouring salt onto my wound.

But here's the thing...

The wound is bandaged. Help it heal by just talking about him. Tell me your memories if you feel like sharing them. Describe random moments that remind you of him, even if they seem trivial. Or if it's too painful for you, and you just don't want to go there, don't share them. Just telling me "I never know what to say but know that I think about Paul all the time," is a nice thing to say. Or, "It's too painful for me to talk to you about Paul right now, but I'm thinking of you."

Please don't fear my emotional reaction. If I get emotional, that's generally a good thing for me to "let it out," and hopefully nothing for anyone to be embarrassed about. The tears mean that I appreciate you and your friendship/love for my husband. They are tears of sadness and tears of gratitude for the fact that Paul had such a positive impact on so many of us.

And another thing...

If you feel guilty because you haven't called me or whatever... don't. And furthermore, don't use feeling guilty or awkward as an excuse not to reach out. If something is telling you to reach out, then do it. Paul was really loyal to his friends and did not hesitate to reach out to them when they were on his mind. That was one of the many many things to admire and love about him.

And one more thing...

If you're one of the rare people who didn't like my husband, you can ignore everything above and keep all of that to yourself. To paraphrase everyone's favorite singing diva Mariah Carey, if there's one thing I don't need right now it's the haters of the world. Those of you are in this strange camp can seriously stay the h-e-double-hockey-sticks away from me.

Shout Out to Doug

2009-09-14T00:53:00.001-04:00

I just read Doug's latest blog post. I've mentioned his blog once before here. He is in the throws of combating amyloidosis and is in the midst of his first Velcade treatment. Every post is so brave and so raw. Every word rings so true. I don't know what else to do but share his battle here, spread the word, and pray for him and others whose lives are f'd over by this disease.

The Widow Project

2009-09-08T21:11:00.001-04:00

After Paul died, I felt a myriad of unfamiliar, scary, numbing, surreal emotions. The one that seemed to bubble up to the surface most often was the sense that there was no way anyone could understand what I was experiencing.

Then I connected with the Amyloidosis Widows Support Group. Women who had survived what I was going through. Wise women. Smart women. Funny women. Women who thought "why me?" Women old enough to be my mother. Women young enough to be my younger sister. So many women with so many stories.

I've posed a set of questions to members of the group and will post their answers to a new blog called The Widow Project. Go check it out. Participation is 100% voluntary. My hope is that the resulting collection of Q&As gives all of us a bit more strength to deal with each day. Or maybe, some of us will just get to know each other better and that alone will provide rare, celebratory, life-affirming moments. And, ultimately, I hope both this blog and the new blog and its voices add to the dialog about diseases like amyloidosis. "Awareness" is one of those things that is allusive and difficult to quantify but here's to hoping that both blogs are amyloidosis awareness building blocks.

My parents, and my best teachers, always told me to never be afraid to ask questions. So, I've asked questions of my widow sisters because I wanted to give them a chance to be candid and be heard in a safe environ. I already know that these women are all my heros. I really look forward to reading and sharing their answers. If the response is positive, I am hoping to branch out and talk to widows outside of the amyloidosis group.

Thanks for following my story. I hope you'll follow their stories too.

Ciao, Summer

2009-09-04T22:32:00.002-04:00

It hit me this morning. The air was different as I made my way to work. My dress and strappy open-toe shoes felt almost like the wrong choice. Summer is ending. Wa wa waaaaah.

I've always felt that those 2 or 3 weeks that straddle the shift from Summer to Fall are the most remarkable part of our calendar. Friday night high school football games that were just cool enough for a jean jacket. The leaves and acorns on the grass at my beautiful college campus in Ohio. The daily color changes to the trees on the windy road leading to my parents house in Pennsylvania. The US Open, baseball playoffs, celebrity sightings, and the contageous, unstoppable energy of a New York September.

During the last seasonal change back in May, I thought to myself "just get through this summer." The entire calendar is now something that I strive to "get through" without Paul. Flipping the page on a monthly calendar can give me both a sense of relief and an intense, sharp pain in realizing that Paul's life feels like it's moving further and further away from us. So in an attempt to get through this summer, I traveled to Los Angeles in early June without my kids. For the first time in ages, I had 7 days of setting my own schedule and priorities. The guilt melted away the night that I arrived when I drove on La Cienega Boulevard and soaked in the dreamy scene. Dreamy not in an LA is "la la land" sense. But dreamy in the sense that every detail didn't remind me of Paul the way that pretty much any nook and cranny within the greater New York City area does.

Since that trip, I've been "getting through" afternoons when I thought I would cry if a coworker looked at my wrong, or ones when I actually did cry over something as pointless as losing my Metrocard. Getting though July 4 weekend, getting though the heat, just getting through.

It was a few days after Labor Day 2008 when Paul was admitted into Sloan Kettering last year. September 4. It was a gorgeous day, though you could feel that the air was different.

Pictures

2009-09-01T22:05:00.017-04:00

Can't come up with any words tonight. So instead, I bring you some recent pictures of Max and Lucas.

At Work

2009-08-26T15:17:00.005-04:00

I'm one of the lucky folks who has an interesting job with a manageable amount of pressure, a positive workplace culture consisting largely of smart, articulate, caring people, and a decent pay scale and suite of benefits to boot. But boy, lately, around 3:17 PM every day, I want to see Paul's number pop up on my caller ID, his voice on the other end a reminder of my very own little but meaningful life. My real life. The one outside of this officle, this corporate world of clickety clackety keyboards, software code, bcc's, and office politicking.

Dammit. I guess I can't get what I want.

Intrusion Confusion

2009-08-21T21:26:00.005-04:00

I've had my share of intrusions lately. Mice in my apartment. Burglars in my building. The flu throughout my body. The flu ran it's course so that leaves the burglars and mice, two opponents that seem unbeatable right now.

They are the types of intruders that don't run their course so easily. They linger. They recruit their friends to get in on the action. They're always one step ahead. They've succeeded in worsening my insomnia. Yesterday, they brought on tears so intense that I felt like they simply couldn't stop.

Are these separate, simultaneous intrusions someone's way of reminding me that amyloidosis is still the ultimate intruder? Is the disease that killed my husband still eating away at the food in our family's spiritual pantry, then crapping it out in the corner right next to my kids' toys? Or worse, is amyloidosis still donning a ski mask and callously chucking the valuables of our existence into a canvas bag while my boys and I sleep and naively, unsuspectingly, dream of a future that is whole and complete? Will the amyloidosis intrusion ever end? Will I ever find peace away from that dirty vermin, that heartless criminal that took Paul?

Do I need to change the locks, or maybe better yet, just change our lives entirely? Like Don Draper on Mad Men. Like people in the witness protection program. Presto. New life. No more intrusions from that life of old.

Throughout our relationship, whenever I left the house, Paul would always tell me, "EBTs," meaning that if I was ever attacked, I should remember to fight back by going for the eyes, balls, and throat of my attacker. I wish like hell that we could have gouged, kicked, and punched the amyloid out of Paul's body, away from his heart, his kidneys, his soul, his family.

Even as you move on to others, amyloidosis, you'll always be here to some degree, stealing -- or chewing -- bit by bit at the life we were supposed to have. Nothing would be better than to be able to lock you up. Or snap your head in one of those old school snap traps. Then, take back what you took. Since that can't happen, I will work on ways to surprise you, or empower others to bring you to your end.

Diagnosis

2009-08-14T23:18:00.012-04:00

dia, meaning "through" or "across"
gnosis, meaning "knowledge."

One year ago today, the knowledge of Paul's diagnosis was delivered to us by a nervous resident nephrologist at Columbia Presbyterian. He was working under the medical super star who had diagnosed basketball great Alonzo Mourning's kidney disease.

"You have amyloid," was the exact quote. "What in the hell is that?" we both thought, looking at each other with complete confusion. The bit about what it actually was, the science behind the protein cells in Paul's blood, didn't really register. What did register was the word "rare." Then the words "very serious." Then these two sentences: "There is a center in Boston. There's also one at the Mayo Clinic in Minnesota."

I had never felt less knowledgeable, less empowered, than I did at that moment.

Paul was quiet, his face with tears, fear, anger. "So, basically I've got blood cancer." The doctor said not exactly. There were treatment options, clinical trials. We made an appointment for that afternoon with an oncologist at Columbia.

Suddenly, we were standing outside of the hospital, near a tall fence. Beautiful day, a lot like today. He called his parents but he couldn't really talk about it. We went and had lunch at a Dominican diner. I remember both of us were drinking soda. Paul was wearing a grey Steelers t shirt and his camouflage cargo shorts. I talked to my mother. She told me she knew what amyloidosis was. When I asked her how, she hesitated. "Mayor Caliguiri had it," she finally said, referring to the former Mayor of Pittsburgh who had died in the 80s. Guess how he died.

"That's not very encouraging," Paul said.

We returned to a crowded oncology waiting room. I went into the bathroom and used my breast pump. The floor tiles in the bathroom were green. The oncologist made no sense. He did a bone marrow biopsy on Paul, screwing into Paul's pelvic bone with, well a giant screw. It was like something out of the movie Young Frankenstein. I wondered if this was some kind of nightmare, and that Marty Feldman would soon be operating on my husband. Paul drove home. He said his ass hurt. Our babysitter was there waiting, smiling with concern. The kids were bathed and happy and beautiful. Paul and I sat on the couch and started a notebook, listing everyone we needed to call.

Through. Knowledge.

Across. Knowledge.

We emailed our friend and neighbor whose dad was an oncologist in Hackensack. She emailed us back that same day with Dr. Comenzo's name. The internet searches were terrifying. We talked to my cousin's wife's brother, John. His amyloidosis treatment success story was on the Mayo Clinic's website. 13 plus years in remission. He said to Paul, "Hey. You can do this. You will get through it." We had him on speaker phone. I wanted to cry and kiss him and Paul at the same time.

"I'm really glad we called him," Paul said.

I checked on the kids. Paul started washing dishes. He cried at the sink, by himself. I could hear him as I shifted Lucas back to his crib. I went and gave him a hug. "You can do this," I said, repeating what John had said, cribbing his words because I honestly felt like no other words made any sense.

"I have to," Paul said.

We slept that night, and every night after that, heavy with diagnosis.

Birthday

2009-08-11T22:36:00.016-04:00

Today was Paul's birthday. Friends and family have told me that they went to church, went to his grave, attended masses in his honor. I'm happy that each of us was able to find our own means of remembering him. I went to work, like I do every day. I put my kids to bed, like I do every day. I thought about the first birthday gifts I ever bought him -- a chef's apron, pepper mill, and various pepper corns. I went through the motions, like I do every day.

I looked at the birthday cards I had given him over the years, which he saved neatly in an old cigar box alongside his pocket knife and his old prom photo. I thought about how I wanted to plan something big for his 40th, but never got around to it. I thought about last year when we spent his 41st birthday at his twin brother Phil's house. How he watched "The Bucket List" with Jack Nicholson and Morgan Freeman in Phil's living room while I put Lucas and Max to sleep. I remembered how we talked about the movie throughout the drive back to New Jersey. I had a vivid image of his eyes welling up as he described the movie, and how pale his skin looked beneath his tears. I remembered how we prepared for the day after his birthday, the day of his kidney biopsy. I replayed the moment when we were walking up the hill to his biopsy appointment and he had to stop to catch his breath.

Piece of Paper

2009-08-09T22:51:00.005-04:00

I took Max to his pal Charlie's birthday party this afternoon/evening. We stayed later than expected as Max and his pals were raging party animals thanks to the pool, the pizza, the cake, and the fact that most of them haven't seen each other for a good part of the summer.

By the time I got home and parked the car and realized that I had to stop at the corner store for some bread, the storm clouds were rolling in. With no umbrella and my new phone in my pocket, I attempted to rush to get out of the store. Max had other ideas. First, he offered strong opinions on the various types of bread that were offered. Three different loaves filled my hands as I impatiently rushed him to the check out counter. With each step, he continued to try to convince me to buy every random item in their snack section.

"Mommy I love these!" he declared, holding up a pack of dried papaya.

As I was paying for our order, the woman ringing it up exchanged a smile with Max and reached for what I thought was a piece of paper.

"Can I give him this?" she asked.

I was counting my change and glanced at her with confusion. "What?"

"This. Can I give it to him?"

She held it closer for me to see.

It was an origami flower. It looked like a sunflower. Paul's favorite. So beautiful.

"Yes. Thank you," I said.

Max and I had a leisurely walk home. We admired his flower together. And the rain never came.

24+ Hours of Brain Riffs

2009-08-04T00:13:00.008-04:00

11:05 PM, Sunday August 2, 2009
I listened to the loudly ticking clock in my living. I remembered how every night for the last few weeks of Paul's life, I would climb onto a step ladder and take the clock down since its ticking noise kept him awake at night. Then, Paul's dad or I would replace it in the morning as that particular clock served as a central household accessory, keeping us all on schedule.

11:23 PM, Sunday, August 2, 2009
Then my brain started to replay some of Paul's toughest days and I type this in email to a friend:

I've been thinking a lot about what you said and agree that "moving on" is essential for me. I have to. Paul pretty much told me that. Right after he was about to embark on chemo treatment and the possibility of him dying was spelled out for us, Paul said 'You and the boys will be ok. After I'm gone, you can move away and start anew.'" I told him "You're not going anywhere, don't think that way," which now, in retrospect seems mean, almost cruel. I wish I would have left my own sphere and thought about him, thought about how he must have felt knowing that he wasn't going to make it. Instead, I was all about labeling prescription bottles, taking his blood pressure every five seconds, and screaming at random strangers for little to no good reason because I had to yell at someone, right? So, maybe it's not Paul's memory that feels like it's slipping away. Maybe it's the very deep desire to have a do-over. To go back and not spew all of my pseudo-optimism at him but instead just hold his hand and help him to feel at peace.

My soul still caves in when I think of the night that I was giving him a bath and he kept asking me to adjust the temperature of the water. After about the fourth or fifth request, I snapped at him and said something like "clearly you're asking for a water temperature that doesn't exist." And he said, breathlessly, "why do you have to do that? I'm the one who has to stand here and feel like it feels to be in my body right now. So don't make me feel like shit about wanting to have this water feel good against my skin."

I think about that all of the time because I really feel now like I let him down at so many turns. Sure, that was one moment. and yes, you'll say "You're crazy. You did so much for him." Everyone says that to me, but in reality, I feel like I flubbed so many parts of Paul dying, particularly the part where I should have accepted it was going to happen and focused on all of us finding some peace with it. Now, I can't take a shower without thinking of that moment. I listen to the clock and it just drones on and on and on.

5:20 AM, Monday, August 3, 2009
I woke up and my teeth and jaw ached from clenching their way through sleep.

1:35 PM, Monday, August 3, 2009
At work, the thoughts were still bouncing around in my brain like pinballs. I opened a Google Alert for Amyloidosis and come across this incredible blog post by Doug, an amyloidosis warrior in the heat of battle. Of course, every patient is different, but so much of what Doug described matches how Paul suffered. It was almost a relief to read the post. Paul simply wasn't well enough in the end to focus for a long enough time to articulate what he was feeling. He'd stare at The Food Network. He'd stare at our kids, wanting to connect with them and cry because he simply couldn't. Doug's voice represented the wrath of amyloidosis from the inside out. Every cruel, wretched side of it.

So often since Paul died, I have longed to hear from Paul first hand what he felt and experienced. I've said in prior blog posts how I always imagined him getting better and being well enough to talk me through even his darkest moments. But that didn't happen. On December 20 or last year, his fight ended and amyloidosis killed him. Thank you Doug for being so raw and uninhibited and honest and brave. Thank you for capturing the reality of it all. Godspeed as you continue your battle. I hope the anger empowers you to beat the sh-t out of amyloidosis. It deserves a good beating.

2:35 PM, Monday, August 3, 2009
In idea occurred to me. A big idea for a major undertaking that will raise awareness about Amyloidosis and unify those who have fought this disease. I wondered if it was even possible. But it was there and it felt important.

12:51 AM, Tuesday, August 4, 2009
The idea still feels important. I had a long talk with my sister about it. We hung up an hour ago and I'm still awake. There go those pinballs again, hitting the side of my brain.

"So, you really think it's possible?" said glass-half-empty me.

"Yes. Definitely."

One Wish

2009-07-30T22:28:00.005-04:00

Dom hands her a pinecone. "Here," he says, "throw it in and make a wish."

Helen passes it from hand to hand as if she needs time to think of a wish. She doesn't, of course--there's only one wish, and it doesn't even need language, it is in every cell of her body. It's hammered out in her pulse, it swells in each dilation of her lungs, and it rushes along in her veins like blood. Make it go away. She lets the wish rise up with all its deep, somatic power, and then she flings the pinecone, which lands in the center of the pool and floats.

--From the novel Hello, Goodbye by Emily Chenoweth

Pinecones, pennies, four-leave-clovers, dandelions, genies. I'd take any variation to get that one wish granted. To get him back.

Two Stories

2009-07-27T21:17:00.008-04:00

Story Number 1:
My nephew Noah, 10, has been a major inspiration to Paul and me for as long as I can remember. He was the brave ring bearer in our wedding at the ripe ole age of 3. As he has grown older, he has continually amazed us with his maturity, his big heart, and his old soul wisdom. The other day, he attended a local carnival near his hometown in PA. The carnival featured a raffling of prizes at the end of the night. There were all kinds of fun choices for Noah to put his tickets against. But instead of going for some tchochke that would entice most 10 year olds, he put all of his tickets into the one basket that sat in front of a granite bench. When my sister in law asked him why, he said, "I want to win it for Uncle Paul."

Story Number 2:
Last week, my cousin Joyce was invited to the White House to be present when President Obama signed the UN Convention on the Rights of Persons with Disabilities Treaty. Joyce's company, Bender Consulting Services, specializes in creating employment and career opportunities for people with disabilities, so her impact in the disability community is nothing short of inspiring. Although this wasn't her first White House visit, she was a little baffled when she was instructed to enter via the media entrance.

"I'm not with the media," she said.

"Oh, that's ok, you're fine," said the kindly staff person as she handed Joyce a press badge and told her to enter.

Onward Joyce walked to find herself alongside camera-toting national journalists whose badges bore names like CNN and The New York Times. She wondered if her Blackberry would do the trick if she was asked to shoot a photo.

When she entered the room where Obama was to sign the treaty, she again piped up. "I just want to make it clear I'm not with the media." Again, this seemed to phase no one and Joyce settled into a seat next to a big wig from the Department of Veteran Affairs. While she enjoyed making a new contact, other non-media guests were still stuck in a security line.

How weird, Joyce thought while all the photographers grumbled to each other and tested their equipment.

She looked at her press pass.

She looked at the photographers.

She laughed.

"Very funny, Paul," she whispered to herself.

Projects

2009-07-24T21:39:00.004-04:00

I consider myself a pretty organized person. Of course, the day to day grind of everyone's adult life sometimes means those DVDs sit a top the TV stand outside of their cases for 3 or 4 weeks; or a big pile of old Christmas cards from 2002 remain stuffed in some desk drawer through 2010. But Paul's death has pushed me beyond that. I am now a disorganized mess.

I lose things all the time. Max's sticker chart, to track his good behavior and reward him for it, disappeared the other day and I'm quite convinced that I must have thrown it away. A new pair of shoes appears to be MIA. The Blue Tooth earpiece for my cell phone has been lost and found by kind neighbors a few times over. I even manage to lose groceries between the check out counter, the trunk of my car, and/or my front door.

Turns out "disorganization and dispair" is considered an official stage of grief in some circles. Well, if that isn't a kick in the ass. I thought the hefty weight of my growing to-do list, and the anxiety that it produces, was just a result of my not giving myself the kick in the ass that I needed to get things done in a timely manner. Maybe my brain is just too busy missing Paul -- too stuffed with the weight of being straight-up sad about him not being around anymore -- to fit in all of those regular logistical matters that I used to handle with relative ease.

When I explained to my bereavement counselor that I was anxious about being disorganized, he asked me for an example. I told him that I hadn't yet ordered Paul's military grave marker. He helped me wade through some of the anxieties I was feeling and then appealed to the project manager in me. "I don't mean for this to sound callous, but treat getting the grave marker like one of your work projects."

Callous or not, that sentence got me to wade through the process of submitting the application for the marker to the Department of Veteran Affairs. And low and behold, I managed to get it done without losing anything or misspelling my own name.

I did have some emotional moments while I did it. For one, I hadn't written Paul's date of birth and date of death in succession for several months. 8-11-67. 12-20-08. The numbers felt all jumbled to me as a wrote them on the dense, confusingly-designed VA form. I actually filled out the form 2 or 3 times to make sure I got those dates and everything else correct and in compliance with the fine-print instructions. Each attempt made me feel out of sorts and, again, just -- straight-up, no fancy-adjectives necessary -- sad. But I got it done, dammit.

Task status: Complete. Completion Date: 7-22-09.

It took me less than a week thanks to my counselor's help in putting me on the path to deliverables, target dates, and RACI charts for myself. Of course, there will be some post-implementation tasks, such as the follow up phone calls to the VA, plus final coordination with the cemetery manager to ensure that the marker is delivered and installed on schedule. And then, the moment when I return to Paul's resting place to verify that all work has been QA'd and completed according to specification.

Too bad there is no contingency plan for the frayed and tangled emotions that are likely to accompany that moment, or have accompanied this whole process and practically every process in my life since 12-20-08. No matter how significant or menial the task, there is no project management tool or skill that can mitigate deep and seemingly endless sadness.

And That's The Way It Is

2009-07-17T23:57:00.005-04:00

Walter Cronkite, Paul's idol, passed away today at age 92. Some photos Paul took of the famed TV journalist are making the rounds today, like this one on the Entertainment Tonight website.

I closed my eulogy at Paul's memorial service back in January with the following Cronkite-related tidbit:

Paul Hawthorne at Age 41 should have lived to be 91. He was always enchanted by the wisdom of older people, and often said that he really looked forward to growing older together. Of all the people he has met as an entertainment photographer, I think the one he was most excited to meet was his idol, Walter Cronkite. Well, actually Cronkite might have been second to Beyonce. But he was up there. Paul told Cronkite how honored he was to meet him and Mr. Cronkite kindly thanked him. That night he called me and said “I almost cried. I met one of my heroes. What an incredible life he has led.” Well, Paul what an incredible life you have led. Cronkite may be 92, but you’ll live with all of us until we are 92 plus. I love you; I miss you and I thank you for those 41 years.

In today's New York Times, Douglas Martin describes Cronkite as a man of "plain-spoken grace." Indeed he was. May he rest in peace.

I Heart Jersey City

2009-07-16T21:24:00.010-04:00

I'm on edge today. Have been all week, actually. My own shit tends to surface at random times which my bereavement counselor tells me is part of the process. He says that one tends to deal with anxiety bubbling to the surface when major milestones or anniversaries approach, like the 1 year anniversary of Paul's amyloidosis diagnosis which looms ahead in mid-August.

Another thing that tends to put one on edge is waking up to have helicopters hovering over my building, literally as if they were going to land on the roof. After calming down my alarmed children, I flipped on the TV to read of the breaking news of 5 policemen shot in Jersey City, the helicopter image on screen being shot by the very ear-splitting choppers that were hovering right above our heads. It's a story that is shocking and upsetting, saddening for the families of the police who are involved and for those innocent people who had to witness the violence first hand. And it's certainly not something you want your neighborhood to become infamous for.

Was my first instinct to list my apartment and move the hell out of here? Yes. Would I have preferred to be waking up to the sound of lawn sprinklers and birds chirping? Absolutely. Am I ready to give up on my neighborhood? Not a chance. Here are a few reasons why:

First, here are some pictures of the awesome friends and kiddos who live in my building. These were taken by neighborhood friends Kristy and Matt, aka Murphy's mom and dad. I was lucky enough to spend my 4th of July with this fantastic brood of kiddos and their excellent parents. The faces in these pictures are reason enough to celebrate our incredible community.
Moving to Jersey City marked the first time in my adult life when I even knew my neighbors names.
When Paul got sick, my friends here in Jersey City helped all of us in countless ways. Dinners, babysitting, grocery shopping, furniture delivery, friendship, and genuine concern, to name just a few.
I still remember the time when Paul collapsed in the front entryway of our building. Two neighbors who live in the building came by when it happened. One (Kurt) helped lift him up and carry him to the elevator. The other (Erin) was ready to call an ambulance for us. That moment still sticks with me and proves the point about the importance of community.
When Paul was sick and we had some rare moments of peace and quiet, he said, out of the blue, "This has been such a great neighborhood for us. What a community." He was right. I only wish he was still here to celebrate it.
When my TV broke recently, three of my neighborhood friends got involved in helping me fix it. Thanks Scott, Dave and Fred.
When I got a flat tire, my friend/neighbor James changed it for me.
During a few snow storms this winter, I arrived at my car to see that the snow had been cleared off of it.
When Paul died, my friend and neighbor Sue (who has three kids all under 5) canceled her entire weekend to be with me.
We held Paul's memorial service at the Episcopalian church on our block. There were so many faces from the block there, young and old. The driveway of the church was covered in a sheet of ice, yet my 100 year old neighbor Mrs. Matthews made her way there to pay her respects.
Paul used to drink scotch and smoke cigars with the guys on our front stoop.
I once drank wine and giggled hen-party style with the girls on that same stoop.
Max and Lucas have about a half-dozen guys right here in this neighborhood who they can look up to, the way they would have looked up to their dad if he was still here.
My friend Jen told me that "It's an honor for me to help you guys." I'll never forget that.
The Indian food rocks.
This fall, in the throws of Paul's illness, my friend Diane, a Jersey City native, spontaneously started to drive me to work in Hoboken, listening to me vent, bitch and cry the entire way.
There are pictures of my family's old neighborhood from my early childhood days. My siblings and I are assembled with a huge group of neighborhood kids, all running around, dirty and dusty, having a ball. Before I moved to Jersey City, I can remember talking to my mom once about how neighborhoods like that probably don't exist anymore. Moving here proved us wrong.

Thanks Jersey City. Thanks friends. Our community has experienced some devastation in the past 24 hours, but it's still ours and still worth celebrating.

It's Just A Fantasy, Wo-oh-oh-oh

2009-07-10T22:05:00.002-04:00

No, not those kind of fantasies. I save those for my secret blog, people.

There are two other kinds of fantasies I've been thinking about lately...

A) the ones that I sometimes had before Paul died, before anything seriously tragic happened directly to me or my family. I used to fantasize that something terrible did happen to me and that I would dramatically triumph through the timultuous, gut-wrenching hell to find myself standing triumphant on the other wide of it all, like a movie heroine. What was that about? Is that psycho-masochism or something? Or just vanity/narcissism? Or just delusion induced by seeing too many melodramatic, bullshit movies that create an idealism around female martyrs? Those questions are kind of rhetorical but, if you think you actually might have an answer, or you just think I'm nuts, let me know.

B) This second fantasy category might seem a little creepier. These are the mundane fantasies that I have started having lately when I consider doing simple little things that would simulate Paul being alive. Like, today when an NFL catalog arrived in the mail, I actually considered ordering him some birthday gifts. I've also thought about sending myself an email from his account with just a simple "I Love You, Baby, Baby" subject line. Or sometimes, I come close to pretending to talk to him on my cell phone, like he is calling me from work. Am I crackers on this one too, or are these just slightly weirder versions of my need to still wear my wedding ring and still keep his iPod on the charger?

San Jose

2009-07-07T23:43:00.007-04:00

The following description of my San Jose trip with Paul back in 2004 was originally written in an email to a friend who was going through some very tough problems related to a man in her life. It was meant to help her to see that despite her sadness, she was "holding the camera," taking the shots, empowered by her own unique point of view. Low and behold, in the process of writing it, I actually reminded myself of the very same thing.

When I first found out I was pregnant with Max, I spent Valentines Day in San Jose with Paul while he shot a tennis tournament. It was a relaxed event media-wise, so he got me a photographer's pass. It was cool. We sat on the court together, cris-cross-applesauce, right at the net, and I shot the tennis action using one of his backup cameras. Andy Roddick, Andre Agassi an the like walked by me all sweaty while I pretended to be a photographer.

After the first match we were in the media room and Paul was going through my images and laughing, smiling with pride at some of the great shots I had taken. "Woah! That shot is @$%(ing incredible," he would say. He was showing off my work to other reporters and photographers, even tried to get me listed as a stringer for his company so I could sell a few of them. I felt so honored. So happy. So thrilled for the unexpected opportunity.

At first I thought I was sharing in something that largely was Paul's world, Paul's viewpoint, with me just along for the ride, in the sidecar so to speak. But then by about the second set of the second match I shot, I realized how much I was relying solely on my very own instincts, just total gut responses to the action on the court, anticipating and gambling on that anticipation. This came through even more so when Paul and I were sitting next to each other making our selects of our favorite shots of the final match. We shot the same moments so differently. Where I caught the grimace of a missed volley shot, he shot the celebration of the opposing player. I think ultimately, this was our philosophy, our desired balance, what made us "us." We each strove to trust ourselves, yet celebrate the instincts of the other.

That balance was rarely perfect because we as people were obviously flawed and selfish. Obviously stressed and harried. Even dark and mean and vengeful at times. But in the end, we each longed for the others perspective no matter how bad the fight, or how ugly its words.

That kind of love was magical not because I found him or because we had each other...but because I was who I was to begin with, and he was who he was to begin with. And I really truly wished I would have celebrated me and him more often. Celebrated him and his handing me a camera and saying "Go ahead. Shoot away, babe." "Well, uh, what setting should this button be on?" "I don't know. Just shoot what looks good to you." Celebrated me and how good it felt to be in the zone, capturing all of my own angles.

Discoveries

2009-06-30T23:49:00.003-04:00

Discovering photos like these on a random CD can make even the stormiest of Junes a bit sunnier:

I hope you enjoy them.

Celebrity Death Match

2009-06-26T22:12:00.005-04:00

Paul and I dabbled in the surreal hobby of celebrity death wagering between 2006 and 2008. We were referred to Kaufman's Dead Pool, an online version of the game of celebrity death prediction, by a friend of mine from college and suddenly found ourselves trolling the web for information about famous folk's illnesses, addictions, and ages.

His dead pool picks were often based on the red carpet celebs he encountered who just looked really, really old. Lauren Bacall, Patricia Neal, and Les Paul were on his 2007 list, for example. I opted for riskier choices, based on risky life styles: Amy Winehouse, James Brown (who was my first "solo hit," meaning I was the only in the game who picked him the year that he died), and Anna Nicole Smith were among my selections over the years. I even wrote an essay about my guilt for being "congratulated" when Anna Nicole died because her tragic death put me in 3rd place. The essay was titled "I'm Sorry, Dead Bunny" and I really did feel sorry.

Now, with Ed McMahon, Farrah Fawcett, and Michael Jackson dying, I am revisiting those days when Paul and I could joke about celebrity demise. He called me at work when Heath Ledger died and we immediately checked to see if any of our fellow death-poolers had miraculously predicted it. One year on the day after Christmas, I can remember a crass, over-the-top debate with him about whether or not Britney Spears was a more viable pick than Lindsey Lohan.

The game's moderator, Gene Kaufman, had emailed me after I shared the Anna Nicole guilt essay with him in 2007. "We all have different ways of dealing with our involvement in the dead pool," he wrote. "I've dealt with it by thinking about the fact that nothing that we do will decide whether these people live or die - they will die (or not) no matter how many people pick them (or don't pick them). We're not betting on HOW they are going to die, and nobody ever won the dead pool by playing a wish list."

I agree with what Gene wrote. However, there's no such thing as "winning" when someone dies. It just doesn't work that way. Maybe you're in the camp that believes Farrah was a bimbo, Michael was a pedophile, Ed McMahon a drunk. Or perhaps, like me and so many of my friends on Facebook today, you're idealizing Fawcett as a timeless goddess, Jackson as an iconic superstar, and McMahon as a jolly sidekick. Regardless of whether you could care less or are having a moonwalk, white glove, zipper jacket vigil outside of the Jackson family compound all weekend long, I'm guessing -- hoping -- you wouldn't count any of these deaths as "wins." All three of these people have loved ones who are shattered right now. What a dead celebrity leaves behind is what a dead regular person leaves behind. It's a messy, dark, sorrowful confusion. And, it won't disappear when the CNN producers focus their attention on something else in a few weeks.

After Paul died, I contacted Gene and asked him to remove both of us from the dead pool game's Yahoo group. I'm guessing my email was a shock to him, since he probably hadn't had the experience of one of his dead pool players actually dying before. As always, he was thoughtful and respectful and expressed sincere condolences. Then I clicked to Paul's player history on the death pool website and saw that he never had any "hits." Not a single, accurate celebrity death prediction. I had had 5. What a waste.

The Next Universe Isn't That Far

2009-06-22T21:14:00.008-04:00

In the children's book "Guess How Much I Love You" by Sam McBratney, our fearless protagonist Little Nutbrown Hare and his dad, Big Nutbrown Hare, describe how much they love each other with cute little exchanges of one-up-manship. If Little Nutbrown Hare says "I love you as far as I can reach," his dad says "I love you as far as I can reach" with his longer arms stretching waaaay upward. And on it goes until Little Nutbrown Hare claims that he loves his dad all the way to the moon, to which his dad replies with one of my favorite last lines ever in any book: "I love you all the way to the moon...and back."

That is far indeed.

During the toughest weeks of Paul's stay at Sloan-Kettering, he kept requesting that the music therapy musicians play "500 Miles" by Peter, Paul and Mary. I didn't know this song, or recognize the title, until a harpist played and sang its soft melody one day in the ICU.

Lord I'm one, lord I'm two, lord I'm three, lord I'm four,
Lord I'm 500 miles from my home

This weekend, I could barely grasp or articulate my feelings about the culmination of events: Max graduating from pre-school, the 6-month anniversary of Paul's death on December 20th, and, what has now become a day to be reckoned with on my annual calendar, Father's Day. The only word I keep coming up with is "distance." I have a feeling of distance, like I'm far removed from what used to be so real and essential in my life. Like there's cloudy plexiglass between me and everything and everyone around me.

Weirdly, I had an annual eye exam last week during which the doctor happily reported that my near-sightedness hadn't really changed much in a year. I beg to differ, I thought as option 1 "F" and 2 "F" were put before me. F that. They both seemed equally, horribly, unattainably fuzzy and far away. The doctor had told me not to squint so I ventured a guess at option 1, the way I used to fill in the lettered ovals on the Iowa Test in elementary school when the teacher reported that we only had a few minutes remaining.

Tonight, Max was about to fall asleep when he sat up quickly and offered me the following parting thought. "Mommy, I forgot to tell you. I love you to all of the planets and back to earth."

I smiled in the dark at his paraphrasing of our favorite book. "Well, I love you to the next universe," I replied.

"Mommy, I told you. The next universe, it really isn't that far." If only I could believe that to be true.

In that ICU, I selfishly thought the home Paul was envisioning while he listened to that beautiful harp was 12 miles away in Jersey City. Now, I know he was embracing a place much further away, far more than the 500 Miles of the lyric.

I can remember hearing the song "No One" by Alicia Keyes on the radio while driving to Sloan-Kettering from my office. The opening line, "I just want you close, where you can stay forever," stung me. Paul was already far away at that point. And with each day since, that distance feels further.

For so long, I believed that our hope as a couple, his unimaginable toughness, copious amounts of love and greeting cards and blog posts from his enormous cheering section, not to mention world class medical care, would bring him closer. Now, I am left with what feels like nothing but a future full of graduations, anniversaries, Father's Days, and my increasingly near-sighted pain.

Real Sports

2009-06-13T23:08:00.011-04:00

Dramatic moments in sports often make me cry. Piazza's home run at Shea after 9/11. Every game of the world series that same year. Mary Lou Retton. Lemieux post-Hodgkins. Kirk Gibson and the fist-pump homer. Santonio's toe drag touchdown in the Super Bowl. US Women defeating China in the World Cup in 1999. Fleury making the bullet-stopping save with a second to go last Friday night...

Paul used to brag that I knew more about sports than he did. It was truly one of those things that we both just loved and enjoyed together. I was never one to roll my eyes in disbelief when my husband put the game on. I was the wife who gave him the run down of the game action thus far -- complete with stats and analysis -- when he walked in the door from work, 10 minutes into regulation, eagerly asking "What did I miss?"

I can remember him screaming so loudly once after an amazing Tiger Woods chip shot that I was jolted out of my chair while nursing Max.

I also remember him watching in disbelief as Len Berman on Newschannel 4 New York dissed Pirate great Bill Mazeroski as a "one hit wonder." We didn't watch much channel 4 after that.

Why did Paul love sports? I can surmise that sports was part of his identity, like me, like any regular kid from Western PA. We both came from households that centered around the Steelers every Sunday. We both loved to play sports when we were young. We both had complete adulation for anyone who excelled in sports at a professional level. The Tiger's, the Mia's, the Crosby's, and Jeter's of the world exemplified something unique, other-worldly, a magical blend of physical and mental superb-ness.

Why do I love sports? That answer is easy. I think it is the ultimate live theatre. I believe sports triumph, whether it be before a nationally televised audience or 88 people in the bleachers at a girls 12-and-under state softball tournament in New Castle, PA on a 99 degree July day, can elevate people, unify them, heighten their collective belief in what is possible. In fact, it's better than most theatre. It's beautiful and poetic. It's breathtaking. It can test your heart and your nerves. It can disappoint or elate, depending on the shot clock, the cross bar, the end zone chalk, the wind at that moment of the game-clinching field goal or set-clinching back hand shot.

So, as you can imagine, 2009 feels completely unreal to me. Pittsburgh, the City of Champions? A Super Bowl, a Stanley Cup, and who knows, maybe a World Series too? (Don't Stop Believin', people!) Nothing close to this has happened since 1979, since Stargell and Bradshaw were on the cover of SI. Since Sister Sledge provided the soundtrack.

Paul would have been beside himself with excitement, pride, and wonderment. He would have ordered the Stanley Cup tees already, in 4 different sizes for the entire family. He would have still been high-fiving after Friday's dramatic game 7. He would have relished the bragging rights. And we would have waxed nostalgic about 2009 until we grew old and grey. Until our boys would tell us "enough already." Until...

Passwords

2009-06-03T21:47:00.008-04:00

Way back when the web was new and exiting and fascinating, my password/login often included the name of an iconic hockey player. I loved him so and I figured his name was French-Canadian enough, with enough vowel oddities in the spelling, to trip up all those hackers who were out to get me. Once I met Paul, the hockey great was no longer front of my fantasy-potent 20-something mind. Paul was. So, I configured passwords that were subtle tributes to the photographer in my life instead of the hockey champion. These passwords were easy and fun and provided day-to-day reminders that Paul and I had beaten the odds and found that luuuuuuuuv that Beyonce sang about on her first album. Now I feel password-less. No Paul. No obvious, easy configuration of alphabetical symbols and numerals. I can't use my kids names. That feels too obvious to the criminal element out there and somehow, like it's bad luck.

So, I've decided that my passwords will be teeny tiny tidbits from my life, changing on a daily or even hourly basis if I want them to. They'll be jumbled, truncated twisted versions of of my peculiar little experiences, like the ironically named "skinny pancake" that I ate this morning, or the two games of ski ball that I lost at the unusually cloudy Santa Monica pier later in the afternoon. If I'm forced to add numbers to them, I'll shuffle through my mind's calculator and find some numeral that feels right for any random ole reason. Maybe a ski ball score. Maybe the score of the game when my 12-and-under softball team won the championship for the Norhteast Atlantic Region. Maybe the call numbers for a favorite radio station of my youth. Essentially, I'm giving myself permission to access my stuff on my own terms, not based on my fantasy crush or the existence of others in my life. And I'll never give out those passwords to anyone. They're just about me, and that will be that.

Baby Steps

2009-05-30T23:12:00.004-04:00

Lucas took 12 steps in a row today. I was arguing with Max while it happened but my mother-in-law and father-in-law, who are visiting for a few days, assured me there were a dozen of them, sans furniture or other balance aid, before he shifted to his butt.

Go Lucas! What a big day for my littlest kid with the biggest smile. I just wish I, like him, could be sleeping away, at peace with my day's accomplishments. He's probably lying there in the dark thinking "Tomorrow, I will definitely get to 15! I just know it!" Whereas I'm sitting here typing and thinking how not tired I am, but how tired I should be.

Maybe there's a "What About Bob?" lesson here. I just wish it didn't feel like I'm 12,000 steps away from feeling comfortable in my own skin again, confident as a parent, effortlessly walking on my own, sans the balance aid who was my life partner.

Throw-Away Envelope

2009-05-27T00:30:00.006-04:00

I tried to organize my purse today while my *&@#ing computer was taking so long to start up. In doing so, I came across a Courtyard Marriott envelope -- the envelope that held the key to my room when I stayed at the one on 3rd Ave for a few nights during Paul's time in the ICU. Said envelope sits on my dresser right now. I ironed out the crumbles and creases, but it still looks ready for the trash heap like all of the gas station, parking and work cafeteria receipts that lived alongside it in my handbag.

It's an inanimate object, a piece of scrap paper, nothing more, right? Oh, how the inanimate can animate. The hotel room with a lot of green tones in the curtains and bedding. The lobby of scattered teams of tourists, and business travels, and me, with my medical file stuffed into a suitecase, dragging loud and heavy on the massive pieces of beige tile. The hotel staff who seemed to sense that I had a a whole heap of shit running through my brain. An extra smile here. A knowing nod there.

That envelope makes me shiver from the cold bed sheets again and the droning, mechanical Marriott welcome message that looped over and over again when I turned on the TV and couldn't muster the energy to surf to a channel. That envelope makes me remember going for a bagel one morning at Ess-a-Bagel, across the street and a few blocks down from the hotel, before making my way to the hospital. I was sitting there feeling guilty because I was probably going to miss the Doctors on morning rounds; because Paul and I used to meet at Ess-a when he was on his way home from the night shift at AP and I was on my way to work in Midtown; because I could just sit and eat and drink coffee and glance at the newspaper of the lady next to me and he couldn't; because I was carrying the hotel key and he always did that.

One Moment to the Next

2009-05-22T20:43:00.005-04:00

Every night, I lie in bed with Max and hold his hand until he falls asleep. There are so many nights when I've wished I hadn't gotten into this habit. The time it takes for him to be asleep enough for me to slip my hand away unnoticed feels eternal when I have dishes to wash, bags to pack, procrastinated work deadlines to meet, playoff hockey or 30 Rock to obsess over. But then on other nights, like tonight, it happens so quickly it's almost scary. I feel robbed or cheated, somehow. Like, "Hey! Just 20 seconds ago, you were here and talking to me and driving me crazy by organizing 23 or 24 different toys in a single file line along your bed rail, careful not to have any of your Ben 10 and Star Wars action figures touching the dinosaurs or Tranformers! And suddenly, you are sound asleep?"

Right after that quick-as-lighting moment when Max shifted into a deep sleep, I stealthily maneuvered may way out of the room, trying not to trip on a scooter or plastic tractor, avoiding the creaky areas of the floor. Just before opening the door to leave, I spied Lucas's chest moving up and down, already over 2 hours into his dreams, the nightlight landing diagonally across his middle. Then, my eyes returned to Max, his once tiny frame filling out the bed's rectangle more and more each night. I studied him for close to a minute to reconfirm the same continual chest motion within his eerily still body.

One minute he's talking to me, the next minute, he's out. Kind of like another moment, already 5 months in the past.

I realize on nights like this that I feel surface-level relief, yet still quite lost at that moment when both of my sons are finally asleep. I walk out of their room and, on more than a few occasions since December, have started to walk toward the living room or kitchen, readying myself to hug Paul and say "All right. They are finally out." He'd have my wine poured and ready, then raise a toast...to us.

Angie Bonpensiero

2009-05-18T21:36:00.003-04:00

I've been thinking about reinvention. I seem to have reinvented my sleeping habits. 1 AM is my normal bedtime. Part of it is anal rituals--kitchen has to be clear of dirty dishes, clothes have to be set out and ready, no half full bottles of wine allowed. Part of it is a struggle to cope with the loneliness of Paul not being here. Midnight before he was sick was the time he was home from an event, working on his images, kicking back, telling me about some drunk has-been movie star on the red carpet (I think his name rhymed with "Kyle Milmer"), some leggy dress worn by a star with the right legs for it (Fergie and Gwenyth were among his favorites in that department.) The apartment at Midnight was alive with his energy during those days. Midnight during his illness was the darkest of dark hours. I think about -- but still can't believe -- how he struggled from 10 PM until 5 AM almost every single night. Struggled to sleep due to intense itching (the dialysis) shortness of breath (the amyloid choking his heart valves), anxiety (all of the above, plus the overwhelming sorrow of seeing his world, his whole, complete, self, slipping away.) So now midnight is this blank, empty thing. This slot of time that I have to stay awake through, letting my mind replay those lively midnights, and those devastating ones.

Last night, I was awake thinking about all of this and then I started thinking about the character from The Sopranos, Angie Bonpensiero, widow of Sal "Big Pussy" Bonpensiero. During the early part of her widowhood, we see Angie handing out meat samples at the grocery store, sad, struggling, and scoffed at by Carmela, the uber mob wife. A season later, Angie, has "money on the street," running Sal's auto body shop that is tied into boss Tony Soprano's business. Angie's was very much a back story, a small detail and nuance that was so essential to the show's intense, sweeping, tragic themes of family, struggle, power, and loss. She may be my favorite widow in the pop culture landscape. Maybe it's my New Jersey locale, maybe it's my yawning at the usual cliches of widow reinvention or rebirth at the hands of a new man. But I think Angie kicked as much ass as any made guy.

And on that note, tonight, I think I'll sleep early.

Four Somewhat Embarrassing Things

2009-05-12T22:38:00.004-04:00

I went to iron a shirt last night and forgot where my iron was.

I'm wearing maternity sweat pants right now, and I haven't been pregnant for over a year.

I started watching the schmaltz-fest known as Grey's Anatomy because I heard one of the characters was having a relationship with her dead fiance.

Paul and I used to listen to WFUV, Fordham University's alt rock/folk/public radio station. Now, Max and I listen to "The Beat of New York! K - T - U!" We both walk around singing "I like that boom boom pow, them chickens jackin' my style."

First Date, First Birthday, First Feline Goodbye

2009-05-05T22:50:00.031-04:00

Today is the anniversary of my first date with Paul. In honor of the Cinco de Mayo holiday, he played the song "Mexico" by Cake in his Toyota pickup truck on the way to that wrestling match held at the Shenango High School gym in New Castle, PA. It was all so far afield from my dating experiences in New York City, and that was a good thing. And for those of you who didn't believe me during the memorial service eulogy when I said that we spent our first date in a high school gym watching Tito Santana execute pile drivers to the delight of the old farmers and 12 year old boys who surrounded us in the stands, here is the ticket stub.

Two days ago, while preparing to celebrate Lucas's first birthday, Max and I discovered that Buco, our cat -- whom Paul had adopted back in 1997 -- was not fairing too well. He barely moved when Max playfully splashed him with water. He was uninterested in food, even treats. He hadn't used the liter box since I had changed it the day before. He would drink only when I held the bowl up to his face. My friend Jen, a lifesaver to me since Paul has been sick and since he died, came over --despite her hang over -- to offer her cat expertise. She checked Buco out and confirmed that he was probably dying. This news crushed me, even though I've joked for years that Buco would "end up in a bowl of rice" at Lynn's Chinese Gourmet (a joke--making fun of racism-- stolen from comedienne Margaret Cho) if he didn't quit stealing our dinner, biting Paul, swatting at my kids, ruining my plants. Despite all of that, he was such a part of Paul. One of the many things that made Paul so unique was his affection for this strange 26-pound cat with a New York attitude, despite his barn origins.

On Monday morning, the vet confirmed that Buco was probably having liver failure and/or kidney failure. I decided to have him put to sleep. Thank goodness Jen was with me for this vet visit. I had never even had a pet before Buco. So, this was my first time facing such a decision. It was the right one, though a surprisingly, terribly painful one. I felt like I was reliving Paul's death on some level for Buco and Paul had the kind of bond that made me understand why people go so gaga over their pets. They have souls. They have feelings. They express emotion. They experience loss and heartbreak, not in an anthropomorphic way, but in their own way. The good news is Max's reaction was quite unremarkable. "Oh well," he said. "I guess that means a lot less trouble for us." True that.

Here are some pictures to commemorate Buco.

This one is a great shot of the kids taken within the last month. I love how Buco is lurking around the corner behind them:

These are shots of Buco that Paul took when they were both healthy:

And here are some pictures from Lucas's birthday party. A shout out to our friend Matt for taking many of these.

The Pledge

2009-04-29T21:44:00.005-04:00

During the pre-children portion of our marriage, Paul and I had a peculiar little argument about being American. He had bought a 48-star flag at an antique store during a trip to Pennsylvania. We moved from the Upper East Side to an apartment in the West Village shortly thereafter, a little shoebox of a studio on a fabulous block equal-distance between Washington Square Park and Union Square Park. While we were unpacking and trying to establish some sort of decor, he had it in his head that he would drape the antique flag over the side of our bed loft.

"It'll look pretty sloppy," I told him while unpacking the margarita glasses in the alcove kitchen. Long, silent pause. "I mean...you know. Just hanging there." This somehow amounted to him accusing me of being "unpatriotic." Paul was a military guy. Proud Navy vet from the first Gulf War whose military experience was certainly a big part of who he was, but not -- and this was a big relief to me -- all of who he was. His politics were liberal. He questioned authority. He believed what he believed with conviction. In short, when it came to patriotism, he was more in the Woody Guthrie camp than the Toby Keith camp. So I was surprised by the accusation. Tired from the move, we kind of laughed it off then finished unpacking.

But the whole conversation stuck with me. I thought about my own patriotism for the first time in a long time and realized that, well, I was pretty proud of the idea of America. I could get weepy when I saw kids at the park speaking different languages, with different skin colors, happily laughing together. Yet, at the time, with that administration cooking up WMD scares, I wasn't feeling too confident in those American ideals surviving.

So what to do? The day before Paul's birthday, I had his flag pressed and mounted behind glass in a simple oak frame. When the framed flag was delivered, Paul was nothing less than thrilled. He shook his head and laughed saying, "you sure do know how to win an argument." It still hangs in our living room and I'm particularly struck now by how beautiful it is.

Fast forward to this Tuesday. I drop Max off at school and am about to turn to leave when I see that he, my son, is leading the entire school in the Pledge of Allegiance. There he stood holding the flag high, hand on his heart, while his fellow students from pre-K thru grade 8 faced him and said the Pledge in unison, then transitioned into "God Bless America." It was already 80 degrees and the sun was shining in the school courtyard. Normally, the entire school wears a uniform -- white, navy blue and khaki -- but on this day they were allowed to wear whatever they pleased. Seeing the kids -- a wondrous cross section of Jersey City's array of cultures and ethnicities -- in their beautiful summer clothes on a rare late-April blue-sky day, pledging allegiance with my little guy holding the flag, was a proud, heart-melting moment. I leaned against the school courtyard fence and watched silently, holding back tears, celebrating the unexpectedly beautiful moments that make being a parent worth every endured tantrum. Feeling in my heart that on this hot Tuesday, I, like my son, was a proud American.

Like everything else that brings me joy, this saddened me for most of the day. I had wished Paul had been there to see it. When I got home that night and looked at the framed flag hanging above our couch, I realized that in some wondrous way, Paul was there in the school courtyard that morning, pledging allegiance to the flag, right along with his first-born son.

Other People's Problems

2009-04-24T12:54:00.013-04:00

From the time Paul was diagnosed and hospitalized until fairly recently, I barely even registered the fact that other people around me were having dilemmas, hardships, or problems of any kind. The ability to give people advice, or simply lend an ear, was gone. I cared on some level, but I couldn't muster the energy to show it. I felt angry and sad and cheated for myself, my kids and Paul's family, yet I couldn't allow myself to feel much beyond that.

Obviously the people close to me picked up on this. My friend Linnea's grandmother died a few weeks after Paul died. I didn't find out about it until I called weeks later to learn that she was out of town for the memorial service. A work friend was dealing with a separation from her husband but didn't share this news with me until last month.

Throughout Paul's horrible battle against a random, mysterious, baffling disease, those around me were dealing with broken marriages, illnesses, addictions, anxieties, grief, lay offs. They "didn't want to bother" me, many of them said. I had enough problems of my own.

I guess they were right. I forgot birthdays. I was unable to execute basic parental deeds. A fellow parent at Max's school recently gave me some pictures from his fall field trip. I was shocked to see him standing in front of a hay maze, smiling. I honestly didn't realize or recall that he had gone on any school trips this fall. Was there a permission slip? Did I even send in the money for his lunch? A kind woman in the Sloan Kettering lounge cried to me and my mom about her husband's lung cancer diagnosis after years of him smoking 2 packs a day. My first thought wasn't empathy but something like, "Well, at least you can channel some of your anger toward the folks at Philip Morris or R.J. Reynolds, depending on the brand."

Yesterday, I received a touching email from a woman named Alana in Iceland whose husband has Hereditary Cerebral Amyloidosis. She discovered my blog through the Amyloidosis Support Groups site. "I wanted to write to you in order to thank you from the bottom of my heart," said her email. "Thank you for sharing the good and the bad. Thank you for your honesty. Thank you for showing me that after the darkest of day, when our worst fear is realized, it is possible for life to go on – albeit not easily and not without an excruciating struggle."

Wow.

Thank you, Alana, for reaching out across the miles to a stranger. Thank you for bravely forging ahead by your husband's side. And thank you for reminding me that there's a world outside of the confines of my very sad, very confused soul that is lost without Paul but will, no must, eventually find its way.

Alana's words jarred me back into the reality that so many others are struggling, battling, sweating it out, day in, day out, just like Paul did, just like everyone around him did. The onset of a struggle could be anything. Amyloidosis. A rare form of lymphoma, like my friend Emily's dad is courageously fighting. Autism, the reality for my 43 year old sister Beth Ann and so many of my friends' kids. A crippling addiction. A heartwrenching betrayal. In some cases, all of the above. The book I'm reading (Love and Death by Forrest Church) perfectly labels these things as life's trap doors.

A friend at work told me today about how she used to work on the 17th floor of the South Tower of the World Trade Center. On 9/11/01, she was in a very boring meeting, then 20 minutes later was running for her life. She described how she and her colleagues evacuated their office and found themselves in the vast lobby only to look outside and see bodies and debris hitting the ground. At this horrific site, a colleague of hers froze in panic. "In a way, it was good that she froze, because I knew I had her to focus on and that I, in turn, wouldn't panic," my friend explained. She dragged her colleague by the arm out of the building. They both ran for their lives and, amazingly, made it.

If we lose our ability to focus on the people around us, we'll never make it. My eyes are regaining the ability to look outward. Hopefully, someday soon, I'll be able to give back some of the kindness and selflessness that has been granted to me and my family.

"Everyone suffers, but not everyone despairs," writes Church. "Despair is a consequence of suffering only when affliction cuts us off from others. It need not. That same suffering that leads one person to lose all hope can as easily promote empathy, a felt appreciation for other people's pain. Grief, failure, even death, can thus be sacraments. Not that suffering is valuable in and of itself...A sacrament symbolizes communion, the act of bringing us together. Suffering brings us together then we discover the lifelines that connect our hearts."

Questions of Romance

2009-04-21T23:18:00.005-04:00

There's a romantic notion that I've held for a long time about marriage and the future and growing old together. I wanted Paul and I to get to those twilight years and look back on it all and congratulate each other, saying to ourselves "we did it. We figured it out." Now, I realize that even for couples who do grow old together that often doesn't happen. Some couples grow old by fighting and bickering through the decades. They form some strange habitual, grating friendship and do nothing much but get on each others nerves until they die at age 95. But I don't care because I can't help but be a romantic and believe we would have been different. I still want to somehow undo Paul's death so that he and I can magically go through a full life's worth of struggle, each alongside the very person we vowed to stay with until death do us part.

I can't undo anything. And I am deeply saddened to face the fact that I'll never get to struggle with Paul again. I don't get to question him, nor he me, the way you do when you know you can push a boundary with someone because of those all powerful emotions that make life worth living -- trust and love. We don't get to make each other better anymore. We don't get to trust and love and question each other.

And on the subject of questioning, one of my favorite things to do was ask Paul questions. I wanted his opinion on everything from the latest celebrities he was photographing to what he thought of something I had written to whether or not the Steelers made good draft choices. Plus, I always imagined -- longed for -- a day when his health stabilized and I'd have the chance to speak to him on a deep level about what he was experiencing while sick. Anytime I tried to do that while he actually was sick, he put up a wall. I'd say, "I am so, so, so sorry that this is happening to you and...." He'd usually glance over at me, then return his focus to Food TV while offering a placating response like, "I know. I'm ok." I'll never get to ask those questions again to a healthy man, who wouldn't be in a a state of struggle and would have the strength to share with me what he really, truly lived through in 2008.

Sure, I have my own vivid memories of the whole nightmare. Plus, there are the photos he captured, which he said he wanted us to use when pitching a story to the New York Times about his experience. I'd write the words and he'd write the images. That was his beautiful plan. "People need to know about this fucking disease," he'd say. But man, if he would have made it like we thought he would, we would have had something so intense and beautiful to share and ponder and process together for the rest of our lives.

I imagined us sitting at the computer together in say, June 2009--me taking notes, interviewing him, delving into the whole experience with him, while the stories poured out of him with sweet and animated detail. He'd joke, then cry, then make a self-deprecating joke about crying. Then, we'd both sit back in wonderment and think, "Thank God he made it." What a romantic story we'd have had to tell together.

What Do You Do When You Don't Have a You

2009-04-18T23:45:00.004-04:00

Max makes up songs a lot. This morning he was singing "What do you do/when you don't have a 'U'?" He repeated this verse no less than 50 times as he played with his toys and bounced about the apartment with silly dance moves executed with quintessential 4-year-old abandon. I assumed he was referring to "U" rather than "Ewe" or "You" given that his preK studies have lately concentrated heavily on the last few letters of the alphabet.

For me the song is more appropriately sung as "What do you do/when you don't have a you?" for without Paul, I don't know who I am. Literally. What do I do? I'm not sure I know the answer. I spend a lot of my days in a state of confusion and paradox--I'm here in the home that he and I bought together, our starter, our first step, our first place with more than 600 square feet, and he is not. So many artifacts of him remain but they only serve as a cruel tease, a sickening reminder that he isn't coming back.

After his little song, later in the day, Max was being a total sh-t to me. I asked him calmly "Why are you being so mean to mommy? You aren't that mean to anyone else?" He avoided the question with a 17-year-old's apathy and impatience. Then when I pressed him to answer he said "Because I keep asking you when daddy is coming back and you keep telling me that he isn't coming back."

What do you do when you don't have an answer, an explanation, a clear, easy, comforting response to an insightful 4 1/2 year old who just wants to understand why his dad isn't here any more?

What do you do, when you don't have a you?

Music

2009-04-15T08:21:00.005-04:00

I never realized how much popular music deals with the larger questions of life and death and loss. Lately these cathartic songs seem to seek me out while I'm driving, while I'm at work listening to streaming radio online, while I'm shopping at Target. So I threw together an iMix of a few of them:

The list could have been a lot longer, that's for sure. And I'm thinking of other songs to add to a different list as a type this.

The rhythm of my footsteps crossing flatlands to your door have been silenced forever more.
The distance is quite simply much too far for me to row
It seems farther than ever before

Wedding Crasher/Sometimes it Snows in April

2009-04-08T21:40:00.008-04:00

A big "happy anniversary" shout out to my sister Jill and brother-in-law Nate. April 8, 2000 was memorable on so many levels. Jill, my roommate since age 2, my sister, my confidante, my debate adversary, my favorite comedienne, my closest friend, was marrying a handsome marine who was like 700 feet tall and so handsome and so kind. Of course, there was the matter of the flurries. Jill woke up that morning at about 6, started chain smoking while watching the snow fall on my parents' driveway and between each inhale said, "Snow in April. I can't believe this sh-t."

Wow. What a day it was already and we hadn't even been to the salon. Then the wedding happened. Again, so fantastic. Danielle blew the roof of the place with that voice! Ann Therese was so tiny yet so grown up and so proud, walking down the aisle. (my goodness, was she actually Max's age at the time?) Jill was stunning and elated. I was kind of giddy for her and for all of us. Ok, well, I was a little weirded out by the fact that my younger sister was getting married before me. I mean, that did, well, suck for me on some level.

AS We entered the reception hall, I heard Jill mutter, "What it the "New Castle News" doing here?" She was referring to a smiling fellow with a lot of cameras, a ponytail, and strange-looking glasses. Next thing I knew, my sister-in-law Ann-Margaret was introducing me to this gentleman. "Amy, I want you to meet Paul Hawthorne." About 30 seconds later, this guy was taking my picture. My niece dances around me in her miniature bride's dress eating cubes of cheddar cheese. I'm laughing and smiling. The photographer and I exchanged a few words. I think I asked what he was covering, knowing full well that any Lambo wedding was big news in town, but still a bit surprised by the media hype. He explained that the woodwind quartet that was playing during dinner hour was a group of local college students whom my sister-in-law had written an article about.

The article was never written. It was a brilliant set up by Ann-Margaret. So brilliant that I fell in love with and married that photographer. And that picture? I can't find it. I'll have to ask around to see if anyone has it. He emailed it to me a few days later to my "amylambo@yahoo.com" address. A different name. A lifetime ago.

A Year Ago

2009-04-03T21:14:00.004-04:00

People love anniversaries. I can remember a friend in college who would often celebrate a one week anniversary with a new boyfriend, then 2 weeks, then 3, then 1 month, and then...well, it was college so these things didn't typically last very long. Today is an extremely painful anniversary for me as it was one year ago today when Paul had a stroke at Grimaldi's Pizzeria in Hoboken. Realizing that the date was looming, I poured over emails that both he and I had sent right after it happened. Here is an excerpt from one that I sent to two of my best friends just after Paul was discharged from the hospital:

I wanted to let you guys know about the latest medical emergency in the Hawthorne household. Paul had a stroke this past Thursday evening. Thankfully, he is fine with no permanent damage but it was a scary, scary experience. He was discharged from the hospital yesterday and we have a follow up with our GP on Monday to talk to her and figure out next steps. I can't even tell you how crazy and scary is was. We were out to dinner with Max paying the check. Max got up to go to the bathroom and Paul followed him. He stopped short of the bathroom door, sat down in a chair, turned back around and walked back to our table. I asked him where Max was and why he didn't go to the bathroom with him, and all he could do was stare at me blankly, make a grunting noise, and hit his hand on the table. It only lasted for a minute but we called 911 and got him to the hospital. Then, while they were signing him in at the ER it happened again. This time for a bit longer of a period of time. At first they thought it was a heart attack. Then they thought it was a TIA, or "mini stroke." Then, after endless tests they realized it was an actual stroke, probably brought on by his high triglyceride levels.

He describes it as a total "out of body" experience and remembers telling himself to "speak" but couldn't remember how to formulate words.

He has been having health issues for the past 9 months, ever since his appendix ruptured, so we are hoping this will be the last of it. He's very serious about taking better care of himself and moving forward, but it's hard for both of us not to feel frightened and shaken up.

I still get crazy angry when I think that the cardiologist at the hospital was lecturing him about having high cholesterol and eating too much corned beef on St. Patrick's Day. I went and bought diet books that focused on heart healthy eating. Paul downloaded the Google Maps pedometer tool and vowed to walk every day and then calculate his mileage, working his way up to longer and longer distances each week. He really committed to it but, over time, was wondering why he wasn't feeling any stronger. Months later we found out that inexplicably high triglycerides are actually a symptom of amyloidosis. As is an unexplained stroke.

He didn't send many emails about the stroke itself. The red carpet was calling and he was back to work and busy within a few days. He put bed rails on Max's new "big boy" bed about a week after he was hospitalized. According to the ticket stub that still sits in his change tray, he took Max to the circus on April 11, 2008, allowing 8 1/2 month pregnant me to have a night to relax.

While walking from the parking garage to my office lobby this morning, I noticed a sign on a door that I have passed hundreds of times but never noticed before. It read, "Gain control of the elevator before entering the pit." 365 days have passed since the stroke. 365 days of trying, and failing, to gain that control.

Celebrity BFF

2009-03-30T21:21:00.004-04:00

So, in an attempt to lighten my mood, I've been reading a lot of E!Online and the like. Celebrity dish. Why? Frankly I think having a best friend who is famous sure would make this sorry ass life a little easier. So, tell me who your ideal celebrity best friend would be. No silly facebook quiz here. Just who you wanna have on the speed dial.

I've narrowed mine to a list of 6 and will probably unveil my selection later this week. I guess this little exercise would qualify as tragic on some level but I hope y'all can join me in some friendship fantasizing.

Keep It Short

2009-03-27T00:24:00.003-04:00

"I think I've been taken
For everything I own
I've been hurt so badly
I'm alone, baby, I'm alone."
--Liz Phair, Johnny Sunshine

There is a struggle as I type this. How much should I share? Right now, I'm afraid I can't share much. The energy ain't there, plus the thoughts in my head are swarming in such a way that I'm not sure how to articulate all of it -- the endlessly looping reel of memories, the gut-punch of nausea that hits me when I pause and realize that I am here while Paul is, inexplicably, not. So, I'll keep this short and just say that I thank you for still reading and appreciate your patience and your empathy and your incredible gestures of kindness and generosity.

Off Center

2009-03-20T23:48:00.003-04:00

There is a deepening confusion to my days. I feel like I've lost my center without Paul. There is something so life-affirming about dedicating your life to being someone's life partner. When that person is taken away, what's left is a emotional chaos. When I was going through some files at work the other day, I came across a resume cover letter that Paul had sent to the Associated Press applying for a job in their Miami bureau. I remember helping him with it, and being so energized the night that we talked about the possibility of up and moving to Miami. We talked about how much sunscreen we'd both need. How it would be a risky move but ultimately a good one. We would have followed each other anywhere and I can remember feeling so lucky to have been so conjoined with him spiritually, yet so independently-minded and happily different from each other.

Well, sometimes we weren't "happily" different. We could fight like nobody's business when I'd get all Sicilian on him and he'd get all Croatian on me. Even the fighting was affirming though. I would think, I hate nothing more than fighting with the person I love most. Our last big fight was last summer and it was about him going golfing. What a cliche, meaningless thing for me to get irritated about. Afterwards he apologized and said, "I'm sorry. I just take it all so personally." "Me too," I said and I noticed how pale his skin was. I told him that it all didn't matter and what really mattered was figuring out what was wrong with his health so we could get him feeling better...so that we could focus on getting a house, starting our life as a family of four. We both felt tired, heavy with the weight of a newborn, a 3 1/2 year old, his health mysteries.

He died 3 months ago. He was diagnosed with amyloidosis 4 months before he died. Lucas will be 1 year old in less than 2 months. And I'll still be lost, off-center, trying to find my way.

Escape

2009-03-18T22:30:00.004-04:00

I am reading Joan Didion's The Year of Magical Thinking, a memoir of her experience when her husband died at the dinner table one night after they had returned from visiting their daughter in a coma in the ICU. It's an amazing book that many of my friends think I'm crazy for reading right now (My friend Lisa understandably suggested Shopaholic instead.) Remarkably, it is so cathartic to read. The opening lines alone...

"Life changes fast.
Life change in the instant. The ordinary instant.
You sit down to dinner and life as you know it ends."

Her writing cuts to the core of the experience. She lets you right into the "vortex" of painful memories that occur when she comes across a place or a word or a sign or a building or a TV commercial that is somehow connected to some seemingly trivial yet excruciating detail of her life with her husband. It's painful to read yet wonderful because of her beautiful words, her unsentimental words, her truth.

On the same night that I dove into this book, I watched "Knocked Up" on HBO. Ever since I have been obsessing over that movie because A) it's the first one that I haven't slept thru in a long time B) it made me laugh my ass off and C) like the book, it was so honest. If the Joan Didion book resonates for 36 year old me, "Knocked Up" resonates for 23 year old me. Just the complete intensity and awkwardness of romance and intimacy and all of that. Plus any movie that can have the lines "Don't drink and bone" and "I wish I liked anything as much as my kids like bubbles" is a winner in my book. I know Paul would have loved this movie too. When we saw "The 40-Year-Old Virgin" we sang the Age of Aquarius to each other for 2 or 3 weeks.

So, I have decided to read serious, heart-wrenching books yet watch over-the-top laugh-your-ass-off movies as my form of escapism and sanity-preservation. Anyone for Sula then "Superbad"? Send me your suggestions for books or movies please, please. And the only Meryl Streep flick on anyone's suggestion list had better be "Mamma Mia."

Feel-Good Post

2009-03-15T23:00:00.007-04:00

I'm a sucker for any feel-good sports story about perseverance, especially when physical perseverance is emblematic of some greater, emotional/spiritual victory. I can remember reading a biography of Jackie Robinson when I was young and it brought me to tears. I was at Three Rivers Stadium when they honored Mean Joe Greene for his induction into the hall of fame and I cried when the crowd gave him a ten minute standing ovation. Anytime anyone wins a 5 set tennis match then collapses to the ground elated, exhausted, victorious, I'm reaching for the kleenex. James Harrison in the Super Bowl? I might as well have been watching Steel Magnolias.

Then, there are the movies that portray the hearts of champions. I'm really a sap when it comes to those Hollywood heartstring-tuggers. Rocky wasn't just about a guy who once punched meat in a locker and then improbably fought Apollo Creed for the heavyweight championship of the world. It was about anyone who ever was told they would never amount to anything...and somehow did. The Bad News Bears were a pathetic joke then, thanks to Tatum O'Neal, that guy who later played the really creepy pervert in "Little Children," and of course Walter Matthau, they kicked some serious Yankee ass. Oh, and let's not forget every single Kevin Costner baseball movie ever made (I think there are 7 or 8 of them, and I'm not sure why.) Or Hillary Swank boxing her way to freedom. Dottie and Kit battling out their sibling rivalry on the baseball fields of the heartland of America during WWII. Or Daniel LaRusso waxing on, waxing off, nearly getting put in a body bag, but them emerging victorious in the end to win the karate tournament, the girl, and the hearts of America.

Here's a real life story about Stephen. His journey is one that I won't soon forget:
http://www.chrisjourney.com/
http://chrisjourney.com/blog/

He's riding his bike from Florida to Massachusetts to raise awareness for Amyloidosis, a disease his mother is battling. A disease that readers of this blog know all too well.

He's 17. The winds are treacherous. The hills...well, just reading about them makes me feel like a total loser for ever complaining about spinning class. The sheer distance must at times be overwhelming, maddening to him. But he keeps going. I am amazed. I am moved. Stephen is a champion already and I don't even think he was alive when any of the above referenced movies were made. If he's reading this he's probably baffled wondering "Who's Kevin Costner?" I only wish Paul was here to cheer Stephen on and thank him for giving everyone in the Amyloidosis community something to believe in.

Flashbacks

2009-03-13T22:33:00.002-04:00

I keep flashing back to the day Paul died. I think this is my brain's way of moving out of the "denial" phase into the cold, hard, "oh yes, the shittiest thing you can imagine actually did happen" phase. I wished the way he died hadn't been so damn violent and cruel. Seriously. All death is violent and cruel on some level but, if it has to happen, why not just a peaceful "I love you" farewell, scripted, predictable, empowering everyone to really, truly, say goodbye. Debra Winger got to say goodbye to her kids right before she died in "Terms of Endearment." Sad as hell, but somehow peaceful with that theme song playing and everything. Paul didn't have that. He had the "I'm starting to feel a bit better" conversation with me and his ER doctor then, boom. He started having what we thought was "just a seizure." I started to scream his name but the doc breezily remarked, "Oh, he can't hear you. Don't worry. He'll come out of it in a few seconds." Then the oxygen mask stopped clouding up. A few minutes later when I was waiting outside of the curtain around his bed, I could see his ankles, still so swollen, jumping each time they tried to force his heart beat back, force him to stay with me, with all of us. I wanted to travel into his body and send a signal to his brain and his heart and his kidneys and beg them, "Please. Please. Keep on going. We've got a lot more to do."

Many Reminders

2009-03-09T23:21:00.003-04:00

The grocery store where we shopped together, dividing and conquering the list with such determination. He went for the fish and the deli and the snacks, I went for the dairy aisle the baby aisle and the produce. The dreary, rainy New Jersey landscape outside of a conference room window whose beauty we often commented on, only half joking. The military shows on the DVR that I can't bring myself to cancel. His car with an International Center of Photography baseball hat still riding along on the back dash, a Phish CD still in the seat pocket, his favorite orange kiwi-flavored trident gum still in the glove box. Our bed. The framed 48-star flag that I bought him for his 38th birthday. The stashed Esquire magazine featuring Britney Spears, circa 2003. The junk mail with his name on it. The humidifiers that he dutifully filled every night. The cat whom he dutifully fed every night. Various prescription medicine bottles that I find in every nook and cranny of this place. A bottle of Pinot Noir that he asked me to pick up while he was in the hospital so "we would have something nice to celebrate" when he got better. The twinge of nausea when I hear anyone facetiously joke about "dying." The light on my phone at work indicating that I have a voice mail. The laptop on which I type this with his "Obama for President" stickers on either side of the apple and his "Warner Brothers" press pass sticker to the right of the mouse pad. The news that he so enjoyed watching and dissecting and caring about. His iPod on the charger with the Batman movie he had downloaded and watched during dialysis as well as an unfinished melody to a song he was planning to write for Lucas. His trophy that he won when he was in a dart league, one that I so often threatened to chuck due it's dorm room aura. Lucas. The card that he wrote to me for Valentines Day of 2004 -- right after I found out I was pregnant -- signed "Love you, Paul and Baby." A birthday card that his grandmother had sent him with an uncashed check in it. Cards written to the kids while he was in the hospital saying "I've got great docs and I'll be better soon." The commemorative New York Times from the day after Obama was elected that I bought him as an early Christmas gift. The dimmer switch that he installed in our dining room. A picture of his grandfather and great-grandfather. Food in the freezer cooked by him and labeled with his handwriting. About 274 Sharpies found in every single drawer. Our wedding photo. The quiet. The noise. The walk to Max's school. Max. Putting gas in the car, which he always had to remind me to do. Locking the doors at night, which he always did.

Elevator Moment

2009-03-08T23:38:00.004-04:00

We were outside enjoying the weather with some friends from the neighborhood this afternoon. When the rain started, we invited Max's friend Ronan to come over so the boys could continue playing for a bit. As we made our way into the apartment and got onto the elevator, Max took off his Yankee's hat -- the one Paul bought him at Yankee Stadium last summer -- and put a few toys in it, basket-style. He looked to Ronan and proudly explained, "I carry my toys in my hat because my daddy does that."

Line of Questioning

2009-03-05T21:57:00.003-05:00

While I was waiting for a sandwich in the Wiley cafeteria today, I saw a colleague whom I hadn't seen since before my maternity leave started. She obviously had heard about Paul passing.

So, how are you?" she asked with a tone of forced empathy. I just said something generic like, "Well, y'know. Hanging in there."

Then she paused for a moment and asked me the most baffling question. "So, do you hate your life now?"

Really, a response was just impossible. How could she even think that such a comment was anywhere close to appropriate?

But after thinking about it a bit more, I wondered, why not just answer it? I mean, so many people say things that are essentially the same question in more socially appropriate clothing. "We can't imagine what you are going through" or "It must be so difficult" are pretty closely linked to "So, do you hate your life now?"

My answer: Not a chance. I love my life. I hate what happened to Paul. I really hate that he was the benchmark for perseverance and positive attitude and bravery and he still died so young. I hate the fact that my kids won't ever know him and that the world won't make sense to me or them maybe ever again. I hate the heartbreak of seeing Paul's stuff every day. I hate the heartbreak of outliving him. I hate the loneliness and the longing. I hate the fact that people have to force themselves to figure out what to say to me and hence say really cringe-worthy things.

But I love my life. My life, my kids, my friends, my family, myself. Yep. I love myself for figuring out a way to get through each day. And I love Paul. He's not here but I still love him. Each day, I mentally reach across some weird twisted maze between this world and that somewhere else and in my mind I tell him how I love him.

Max always reminds me that "hate" is a bad word. But maybe in this case, it was a good word to get me to think through why I really do still love my life. Thanks for the cringe-worthy comment, anonymous colleague.

That Soft Thing

2009-03-02T21:39:00.005-05:00

Max, Lucas and I sat near the window at Dunkin Donuts on Saturday afternoon where we enjoyed a remarkably peaceful lunch. Then, the pitbull arrived. His owner tied him up right outside of the window then walked in to get his coffee. He was a handsome pitbull who admired both of my kids, tilting his head inquisitively everytime Lucas kicked and squealed at him through the glass. Then Max noticed something.

"Mommy, is that dog a girl?"

I turned to check. "Let's see...Nope. That dog is a boy."

"Like me?" Max asked.

"Yes," I said trying to brainstorm a new topic quickly, like maybe we could talk about the green-sprinkled munchkins and how they meant that St. Patrick's Day was coming or perhaps I could get Max to count the number of D's in "Dunkin Donuts" or maybe...

"Then why doesn't he have that soft thing?"

Shit.

If this were a sitcom, this would be the part where I'd spit out my coffee all over both kids.

"What do you mean?" I asked, innocently.

He rolled his eyes. "You know. That soft thing that's right behind my willy. What is that?"

I could hear Paul's voice in my head saying, "Well kiddo, those are your balls." But I couldn't really just say that, right? But...hmmm...what could I say? Clearly, saying some weird made-up thing could lead to issues that his future significant others would hate me for. Finally, I just said, "Those are testacles."

"Well, what do they do? I mean why do I even have them?"

God, how I missed Paul at every moment but I REALLY missed him at this moment! I mean, he could have just handled it, cut to the chase, explained it in simple boy language. Finally Max jumped in and saved me from his own line of questioning. "I know. It must help me pee, right?"

"That's right," I said. Whew. The dog's owner exited, shaking his head and laughing. We waved goodbye to our friend the pitbull and finished our (doh!) munchkins.

"He laughed and wept, noticed sunsets..."

2009-02-28T23:03:00.003-05:00

One of Paul's favorite books (and movies) was The Shipping News by Annie Proulx. I found these few passages in the last few pages.

Quoyle experienced moments in all colors, uttered brilliances, paid attention to the rich sound of waves counting stones, he laughed and wept, noticed sunsets, heard music in rain, said I do...

"Bunny, I'm going to tell you something straight. Petal is dead, she is not in a coma. She is not sleeping. Your dad said that so you and Sunshine wouldn't be too sad. He was trying to be gentle..." Silence. Bunny picked at the crocheted stars of the bedspread. Wavey saw the questions would come for a long time, that the child was gauging the subtleties and degrees of existence. Downstairs the hubbub and the laughing increased. Upstairs, difficult questions. Why was one spared and another lost? Why did one rise and not another? Ah, she could be years and years explaining and never clear up the mysteries. But would try.

And the Oscar Nod-Off Goes To...

2009-02-24T00:17:00.002-05:00

I am sitting here trying to remember the last movie that Paul and I saw together during which I did not fall asleep. He would just marvel at the fact that I'd be snoring about 20 minutes after the opening credits, regardless of how enthralling the film was. There was the movie "Once." He loved it. Was crying at the end. Yet I was asleep about 15 minutes in, right after the main guy and that chick had that beautiful, but strange impromptu duet in the music store. I think I saw the end of "Waitress" but he might have been working the night that I watched that one. Oh man, the Will Farrell figure skating movie. Paul DVR'd it for me and it took us about 3 viewings before I saw the whole thing. Each time I'd crash in the midst of a different but equally insane shining-spandex moment of absurdity. He watched it all the way through three times and giggled more each time.

Come to think of it, if I was watching a movie alone while he was at work, it was easier for me to stay awake. But if we were home together watching something I'd get all comfy using his belly as my pillow and lights out. So last night, I was wide awake to see Kate Winslet and Sean Penn accept their awards. Last year, I slept so peacefully while Paul channel surfed between Javier Bardem's speech, hockey, and college hoops. The critics say this year's show was one of the best ever. I'll take last year's any day.

Pick Up Some Coffee

2009-02-19T22:58:00.003-05:00

The boys and I went to visit our friends the Bartro's in Connecticut this past weekend. It was a very nice getaway for all of us. Max got to play with Sam (7) and Charley (5), Lucas got to get spoiled with lots of attention from everyone, especially Ruby, their wheaton terrier, and I got to spend some quality time with one of my dearest friends.

We returned on Monday and it seems that each day since we got back has felt increasingly more difficult. When I feel normal for a bit, I then feel guilty for feeling normal, and then that spirals into feeling shattered, incapable of carrying on a normal conversation without continual images of Paul when he was so sick flashing through my head. Memories of his eyes welling with tears when he was diagnosed, vivid reruns of the times during his illness when I got short with him, snapped at him because he would exhaust me by asking me to repeatedly adjust the dial on the humidifier so that it was at just the right level, or to put a certain number of ice cubes in his glass. When I think of it now, who could blame him? There was so little he could control, why not make it a point to get the humidity perfect, the coolness of the glass of water just right. I was angry and tired yet I got it, I got him, and as frustrated as I could get one minute, the next minute I wanted nothing more than to scratch his back in just the right spot when his skin was itching so badly from the dialysis. I just wish I would have skipped right past those moments of frustration and done nothing but care for him and love him. My grandmother Ciampoli had the ability to do that. You never even sensed that she was angry. She'd always find the right thing to say and would stay in the right frame of mind no matter how insane the situation in front of her was. I didn't get those genes but I wish I had.

So, the moments go by, and these memories flash by quickly, incessantly, and I keep on going through my day and talking about the weather, and my work projects, and my son's school lessons. Then, there are the text messages I still have on my phone from Paul. I've been reading through them and finding such comfort in the simple, mundane, exchanges that predated Paul's illness, predated the craziness that was about to hit us.

There's this one that he sent me at work one day while he was home with Max. It really made me smile at the time he sent it and still does:

Paul: Max and I are talking about thunderstorms because there's lightning outside. Love you!

Or this one. A typical silly married couple exchange:

Me: Hi honey. We're out of coffee. Maybe you can swing by a bodega near the office if you have time? Love you.
Paul: Doublecheck. There should be one in there. I bought two last time.
Me: Oops there it is! Sorry!
Paul: NP. Love you!

I wish we could drink coffee tomorrow morning together. I'd ask him "you get coffee yet?" Or if he was in the kitchen first he'd ask, "Want coffee, hon?" And, on went our day.

Do You Remember...The 21st Night of September?

2009-02-11T23:46:00.016-05:00

Paul was not a big Commodores fan like me. But I simply can't say or type the word September without singing that song. I know, I know. I wish I had cooler taste in music too.

September 2007 started out perfect but then took a down turn. And things never really got better for Paul (or us.) We spent Labor Day weekend in Vermont. It was just the two of us. Our son Max was all set at his Uncle Phil and Aunt Robin's house. And off we went to revisit our favorite honeymoon spot. It was so relaxing and fun and...um...rekindling. We were really feeling good about just taking a few days to coast through those last days of Summer. Below are some pictures from that weekend. They were taken during our hike of the slice of Appalachian Trail that was a few miles from where we were staying.

The saddest thing for me when looking at these is the recollection of just how perfect that weekend felt. Then we got back to New Jersey. Paul called me at work that Tuesday saying he had really bad abdominal pains. The next day he was hospitalized for a ruptured appendix. That marked the beginning of the year of mysterious, scary health problems that were left unexplained until August 2008. Oh, and did I mention when he got home from the hospital, so in need of my help and care, I went to quickly change Max's diaper and then caught a wave of morning sickness so recognizable I didn't even need the pregnancy test?

Maybe a better song to describe the September 2007 hike in Vermont is "Last Good Day of the Year" by Cousteau:

"All these things in flavour
Won't do you no favours
When the summers light is fragrant with scents of returning
You relent, you resent, now you're burning
For nothing to change....

There's something there...
(amongst the fallen fruit and flowers)
Won't rest
(only minutes, only hours)
Unless
(now the morning breaks in showers)
I guess
We'll remember this all of our lives
On the last good day of the year"

Anniversary

2009-02-09T22:25:00.001-05:00

Today is the 8th anniversary of our engagement. Paul proposed during a trip to London and had considered proposing on Valentines Day but was too nervous to wait. So, he proposed near Kensington Palace on the morning that we arrived. He even got down on one knee. On this day every year, I'd call him once I got to work and wish him a happy engagement anniversary. Then, of course, he'd sing "Happy Anniversary Ba-by. Can't get you off my, miiii - iiind."

While Max was taking his bath the other night he told me that he wished he was a girl. I asked why and he said "because boys die and girls don't." Then we had a long talk about how girls do die but that didn't mean that I was going to die until a long, long time from now. It was a heart-wrencher to say the least.

Right now the clock in our living room is ticking and I remember how -- when Paul was sick -- I used to have to take the clock down every night and put it in another room so that its loud ticking noise wouldn't make Paul nutso while he tried to sleep in his recliner.

Today, I came across a blog about Ralph, a guy in Utah who died of Amyloidosis at age 31, a full ten years younger than Paul. His wife was pregnant at the time. Heart involvement, just like Paul.

I found this photo today. Staten Island. Summer of 2006 is my guess

Paul and Phil/Thank You Ben, Santonio, the Steeler Nation

2009-02-02T21:53:00.013-05:00

First, I have to post this very cool photo of Paul and his brother Phil. It was taken by Paul's colleague Billy Farrell this summer when Phil joined Paul at a red carpet event in NYC. Thanks, Billy. And Thanks B-Ach for tracking it down. I know this picture is special to Phil. It certainly is special to me because it captures Paul and Phil in a rare moment. Think about it? How often do we, as adults, just get to see our siblings and hang out with them alone, the way we did when we were kids? I keep thinking about how Paul was calling for Phil the night his dad and I called 911, a few weeks before he passed. What a remarkable bond the two of them had. This photo captures it so beautifully:

Now, on to the Super Bowl... Super Bowl Sunday was a bitter sweet, unforgettable day here for Max, Luke and me. We had a lot of friends over, some crazy good food (Sausage dip...Who knew?), and a game that was high stress/big payoff. They are trying to "name" Santonio's catch. I've heard it called the "tip toe touchdown" and "Ben to 10." I'd rather they call it something Paul would have called it: "The best freakin' touchdown in the history of the Super Bowl." Forget all the clever rhymes and what not. And boy do I feel like a fool for not realizing that Santonio was paying homage to Lebron James with his end zone celebration. I thought he was throwing salt over his shoulder for good luck. Figured it was some kind of Rooney's/Irish thing. Here are some shots I took of the boys before the party. Their dad would have been pretty proud of these.

Keep the stories coming. Here are some pictures from Paul's hospital stay.

2009-01-28T22:15:00.010-05:00

Paul had been planning to craft a complete photo essay about his experience with amyloidosis. He took some great photos during his stay in the hospital and then enlisted his dad or me to take photos of procedures that he couldn't photograph. He used to say, 'You can write the essay and I'll do the pictures. We can raise awareness together." Well, I don't think my words can ever do justice next to some of his photos. Here are a few that are so moving for me to look at now. You can see Paul's wheels turning in each picture as he tried to capture the unique, comforting details of his arduous in-hospital experience. You can feel it in the pictures...feel him using his art to propel him through each increasingly difficult day.

An addition to Memorial Sloan Kettering was being built outside of Paul's window. He would joke that they'd probably finish the building by the time he was discharged. I'm not sure if someone else took this or if Paul set it up. I think it's beautiful and simple and sad.

A photo of Lucas and Max was taped at the foot of Paul's hospital bed. It's framed by his painfully swollen ankles and feet.

In this bag is a high dose of Melphalan, the chemo drug that Paul had to endure during his stem cell transplant. My guess is that this photo features his first of two doses.

A chemo nurse hangs the bag of melphalan and checks it -- a routine part of her day.

Call for Stories About Paul

2009-01-26T00:56:00.003-05:00

Hi folks,
One of my closest friends visited me this weekend and we were talking about how when you lose someone condolences are meaningful and helpful but the memories and stories are what will always bring comfort as time passes. So, I'm asking that you take a moment and post a story about Paul in your comments here. I'd like to collect these stories for myself and for my kids. Nothing feels more important right now than ensuring that my sons are able to hold on to the words of Paul's friends and loved ones and use them to understand their dad and the many facets of who he was. Many of you have already posted some great stories in prior comments but...heck...post another one. It can be anything that comes to mind. Make it two sentences or several paragraphs. Happy. Sad. Simple. Complicated. Silly. Serious.

Thanks and much love,

Amy

Some More Pictures

2009-01-21T23:47:00.004-05:00

I came across these today. They were taken on August 1, 2008, about 2 weeks before Paul's diagnosis. I love the early morning, bleary eyed, "this is just us on a normal day" calmness. Plus, it's such a bonus to have another picture of Paul with Lucas. It's one that Lucas will treasure in years to come.

Stillers

2009-01-18T23:32:00.005-05:00

Steelers 23, Ravens 14. Paul would have been in his glory, waiving the Terrible Towel, calling his dad for an Ed McMahon inspired "Hey-oooooooh" after every touch down. The boys and I did our best to get into the spirit of the game. The way Lucas is smiling, he should be wearing Ward's jersey instead of Polamalu's. Here are a few pictures:

Photos

2009-01-12T23:18:00.016-05:00

Pauls good friend Marion took a group shot of most of the photographers and photo editors who attended the service. They were kind enough to ask me to be in the shot with them. Oh, how I wish it was Paul who was there instead of me, standing alongside his pals, exchanging barbs, laughing it up.

I know some of the shooters who were there took a few candids around the room too. I'll post those when I get them. Meanwhile, here are some shots of Paul that his buddy Michael had printed and displayed on Saturday. Some were taken by Michael, some were taken by other photographers. Unfortunately, I'm not sure which ones.

I really love all of these pictures. Thanks, Michael and Marion and anyone who might have taken some of these.

And last but not least....Paul and his pal Tron man.

In closing, I'll share a Steelers anecdote. Did anyone else shed a tear on that first touchdown yesterday when Santonio Holmes ran the kickoff back for a touchdown and landed right on top of a photographer? That was the kind of moment that Paul would have just gone crazy for. I was crying, imagining he and I watching the game together while he rewound the play to see if he happened to know the poor guy whose lens just got smashed.

Good night all. Love,

Amy