Emily Dickinson wrote a famous quote about hope. Something about it being a bird and never giving up?
Hope is a wonderful things, but there’s something they forget to tell you about it–sometimes you’re desperate for hope. You want to be hopeful, and you’re looking for any little thing to help you feel it.
My newborn son, Charlie, had a brain bleed (stroke) five and a half years ago, and when that happened, I was desperate to be hopeful. Every medical professional around me was somber. They predicted the worst for my child and I have never felt so alone. This was before I had a Facebook account, before Twitter; I didn’t even own a laptop although my very sweet in-laws allowed me to borrow theirs while we stayed in the hospital for a few weeks.
When the doctors have already given you the worst possible news, when they avoid eye contact, and sit you in a room to be alone, THAT is when you need hope. You also need it as you get ready to take on the unknown. When they tell you that a child who shouldn’t have lived will now be your sole responsibility, it’s terrifying.
That’s when I found the forums sponsored by the March of Dimes. Mothers with every type of child were sharing their stories–preemies, brain bleeds, feeding tubes, hydrocephalus, spina bifida, lung trouble. For any imagineable diagnosis there is a parent who has already been there–a parent extending a branch of information and hope. I cannot imagine making it through the early days of Charlie’s life without the March of Dimes’ forums.
Four years later, when my water broke at thirty-three weeks and five days, I held on for twenty-four uncomfortable hours so I could receive two injections that would strengthen the babies’ lungs. The March of Dimes developed this treatment.
I think a lot of us take it for granted these days that premature babies will do OK with a little time in the hospital. When I tell people my twins were born at 34 weeks (I like to round up), most shrug their shoulders and say, “not too early!” We forget that it’s only recently that babies born early have such a great chance at life. Even better, they have a chance at a life with little or no respiratory issues. With my twins, Louie had about 24 hours of mechanical ventilation and August had some blow-by oxygen. Neither has any lasting lung issues as a result of their prematurity. To contrast that, in 1963 Jackie Kennedy gave birth to a baby at 34.5 weeks who didn’t make it because of respiratory issues. That’s a few days later gestation than my twins. Pretty frickin’ fantastic that we’ve come so far in just fifty years and The March of Dimes has spearheaded much of the research involved.
I feel that I am forever in debt to the March of Dimes–for everything that they have done for me and my family–so when they asked me to write about their upcoming fundraiser in New Orleans, you can bet I didn’t hesitate to say yes.