Five years ago, that changed for good when my nephew, Aloshua, was born. Not only was he over three months early, but he was born with a birth defect and a host of complications that have affected his life in many ways. When he was born, we never dreamed that our lives would change so entirely, but they did. I went from a 21 year old newlywed to a 21 year old advocate overnight. In the 5 years since, a lot has changed and I talk often about Aloshua and what he’s gone through.
If you’ve read the preemie stories here, you’ve probably seen his story. In his story, I mention that you simply can’t prepare for these things. That’s true.
Every child is different. How prematurity will affect an individual child is a great big question mark. There simply is no way to tell. You can’t look at a preemie and say “She’s going to have retinopathy” or “He’s going to be five before he talks.” It’s just not possible. But, as we’ve said countless times here at the Fandom for Preemies blog… it’s not hopeless either.
It’s not... and that’s why I wanted to help put together the Fandom for Preemies fundraiser.
It’s not hopeless.
It’s hard. At times, it’s brutal. But what you learn along the way is so incredibly important. Seven years ago, I knew nothing about prematurity. Today, I know more about prematurity than I could have ever been prepared for and that’s okay with me. I’m not clueless anymore… and I’ve been able to help make a difference for others along the way.
That’s a big deal.
It has, by no means, been a walk in the park. But ask any parent of a preemie and they’ll tell you the same thing: no preterm birth is ever easy. It’s never simple. It’s never without fear… but it happens every single day.
And that’s why this fundraiser has been so important to me personally. I may not be a parent, but I do know what it’s like to go to sleep at night and wonder if your child is going to survive. For the last five years, that’s been the reality for my family. Aloshua has had to overcome many obstacles in the last five years and he is nowhere near done. I don’t know what tomorrow holds for our family… but I do remember what yesterday was like for our family. Anything I can do to make that easier for another family is absolutely worth it.
And I am honored that everyone who has participated in Fandom for Preemies this year has helped us by fighting for the countless children like him. Whether you wrote a story for the Compilation, retweeted one of our tweets, or donated to the March of Dimes, you’ve helped. Maybe we won’t see results tomorrow or even the day after… but we will eventually and that is truly awe-inspiring.
You have a lot to be proud of… but there is still a lot to do. Today is Fight for Preemies Day and I would like to encourage each and every one of you to stay involved. Fandom for Preemies will end at the end of the month, but the problem will be there long after the fundraiser closes. Get involved. Whether you knit booties for the babies in NICU, take snacks to the families waiting in waiting rooms, March for Babies with the March of Dimes, talk about your experience to families now going through it or encourage your legislators to continue to pass legislation aimed at ending preterm birth, it can make a difference. Ask any family that has been there and they will tell you the same thing: every little bit helps.
To learn more about what you can do to continue supporting the March of Dimes after Fandom for Preemies ends, please visit this page.