Visit

After 3 years of widowhood, you get used to, or maybe numb to, a lot: the telemarketers who call for Paul, the school forms where his name would be, cursing while struggling to take a light fixture apart to change the bulb and being surrounded by the memory of him cursing at that same fixture on the same ladder in our same kitchen. But, the cemetery is one of a few things that I doubt I'll ever get used to. It's not the grave site itself. It's the overwhelming love and heartbreak of watching my children excitedly jump out of the car to "visit" their dad.

These photos, taken a few days after Christmas, capture some of it. The way they look like little kids and little men at the same time. How proud they are to be posing with a marker inscribed with the words "Paul Andrew Hawthorne." Before these were taken, their fingers traced each letter of his name as if it might help them know him or remember him or see him. And maybe it will.  But I don't think I'll ever get used to this place or these visits.

Three Shots. One Race. One Posse.

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:

1. 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.
2. 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?
3. 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.
4. 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.
5. 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

6. 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.
7. 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.
8. 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.
9. 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.

10. 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

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

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

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

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

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

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.