Monday, March 17, 2014

Why We Walk

J at his first March for Babies walk

I never participated in a charity walk or race before my kids were born. Sure, I donated to other people's causes, and I volunteered my time. But, I never directly participated in fundraising for a national charity.

This will be our fourth year to walk in our city's March for Babies fundraiser for the March of Dimes. Because we are moving this year, it will likely be our last.

Why do we participate? For many reasons. The first year we were just coming out of a very long nine months. J was born 14 weeks early, and then he was hospitalized for 3 months. He came home in October to RSV season, and we were quarantined for five months in a place where we had no family and very few friends. During that winter, I lived for the March of Dimes walk. In the spring. When our lives would finally thaw and we would begin to operate as a normal family. When I could take my son into public and, for the first time in his 9 months, I could show him off. When people would see me as I was: a new mother. When we could go to stores and restaurants and sporting events and all the other places I'd dreamed we'd go during those months of isolation.

That first March of Dimes walk was a chance to enjoy the sunshine and warm weather with friends we'd made in the NICU. They were like us: pent-up, exhausted, emotionally-spent, fragile. But, they were also like us: deliriously happy to reenter civilization, with healthy babies.

And I'll be brutally honest: That first March of Dimes walk was a chance to actually celebrate. To breathe. To relax and enjoy being a family of three. We had been in survival mode for so long that there had been little time to celebrate. And, if I'm being truthful, other than having the support of our parents, we had felt alone during those nine long months. So many of our family and friends were scattered in all the places we'd lived, and their physical distance often translated to a distance emotionally. They had no idea what our daily lives actually looked like. And though I'm sure they cared, we felt that little surrounding the surprise birth of our son had been celebratory. There were no showers, no parties, nothing to mark the homecoming of our miracle. And if I'm being really honest, I was terrified for a long time to celebrate J. He was a 26-weeker. Anything can happen to a 26-weeker in the NICU, and all through RSV season, I held my breath, praying that an illness wouldn't unravel all the health he had worked so hard to gain.

I've often wondered how my son was so fortunate. How could he have no lung damage and be born so early, without the benefit of steroids to strengthen his lungs for the ridiculous task of breathing 14 weeks too soon? How? As I've learned more about prematurity, I've come to realize that question has many answers, but one contributing factor was the surfactant his lungs received in his earliest hours. They allowed his lungs to inflate and receive the oxygen that every cell in his body needed. So, surfactant not only helps the lungs but every other precious part of a preemie's tender body. March of Dimes researchers are credited with developing the surfactant therapy that likely made a difference in J's outcome. Would he have lived without it? Maybe. Would he have the same quality of life? Definitely not.

Our second March for Babies walk was miraculous because we were with my friend with quads. Here we were, two healthy, young women back on our feet after two difficult years, and sprawled in front of us in strollers were five preemies, the largest of whom weighed 2 lbs. 8 oz. at birth. In fact, I added all of our babies' weights and discovered that together they weighed just over 12 pounds. I thought all our days with tiny babies were behind us, and I delighted in our future.

Last year's walk was difficult because my husband was on a business trip in London and was unable to participate, but it was no less significant to us. In that last year, I had gotten pregnant, had a relatively uneventful high-risk pregnancy, developed a surprise case of severe preeclampsia, had another 2.5-lb baby, and weathered another NICU stay. There I was at the same walk representing not one preemies but two tiny babies.

We decided this little peanut was still too small to venture out for her first March for Babies.

Somehow, it seems fitting to make this walk our last. It doesn't mean that we won't continue to donate to the March of Dimes, and it certainly doesn't mean that we won't continue to find ways to give back to our preemie community. If we meet our goals this year, we will have raised over $5000 for the March of Dimes, which is exciting for us. But, with moving and leaving so much of our NICU days behind us, it feels like it is time to say goodbye to the March for Babies walks as well.

It's not about the money. It's not just a walk. For us, March for Babies is intensely personal. It's about making lemonade out of lemons. It's about encouraging other families like ours. It's about putting our children's names and weights on t-shirts and declaring them as the survivors they are. It's about recognizing the babies who weren't as fortunate as our babies were, and it's about calling attention to so many conditions and diseases that remain shrouded in mystery.

To put it simply, we walk for our children and for all the other children like them.

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