Dec 17, 2008


Even after Davis was diagnosed, I didn't understand the big deal about awareness. The words "congenital diaphragmatic hernia" alone tend to make people's eyes glaze over, and it's not the easiest sickness to explain. People hear "hernia" and assume it's no big deal. It felt like such a chore to educate anyone who happened to ask. I just figured the less I said about it, the better. Other moms whose children are battling CDH were busy writing proclamations to the governors of their respective states to get March 31 declared Congenital Diaphragmatic Hernia Awareness Day, urging their friends and family to wear turquoise ribbons in honor of the day. I didn't see the point. Raising awareness seemed exhausting, and it wouldn't make Davis even a little bit better. 

Then, the other night, I was having dinner before one of Michael's gigs. We live in a small town, and word gets around fast. We ran into one of my mother's old acquaintances and talked about a couple of things before the woman got around to asking about Davis. "Oh, that's right," she said, "you've got that WEIRD baby." 

I wish I could say I had a witty retort that put this woman squarely in her place, but I didn't (even though I thought of several after the fact). Weird baby? I know she didn't mean to be cruel, but I can't find words to say how hurt I was. This woman, albeit tactless, isn't a mean person, and I really tried to just brush it off. Maybe it's pregnancy hormones, but I couldn't help crying the whole way home. I called my mom, which was a mistake, because she wanted to go back to the restaurant and give the woman a piece of her mind. I talked her out of it and thought for a long time about why one woman's tactlessness would get to me the way it did. 

What I came up with is this: Davis is my sweet, innocent boy. He isn't even born yet, and already he has huge fights ahead of him. Most importantly, he has to fight to survive, but after he wins that struggle there will be others, too: the struggle to breathe independently, the struggle to eat on his own, the struggle to catch up to his peers after many long months in the hospital. What upset me about that woman's careless comment is that in the midst of all this, there is also the struggle to be understood. 

Like it or not, we tend to see what we don't understand as strange. Even though CDH is as common as spina bifida and cystic fibrosis, most people haven't ever heard of it. There is the serious PR problem of the name itself, coupled with the fact that until recently relatively few of these babies survived to tell their stories. There aren't many news articles about CDH, and no celebrities are touting the cause- only a few dedicated mothers who work tirelessly online and in their communities. I didn't understand why they went to such lengths, but I do now.

I get it. I will write my letters, wear my ribbons, and tell anyone who wants to know the long story of why a simple thing like a hole in the diaphragm is a life or death matter. As much as I wish it wasn't, CDH is a part of Davis, and he deserves to be understood.


Brad, Kellie, Lucy and Baby Carter said...

What a beautiful post! I still find it difficult to explain it to people. And after they hear the title, they say "oh, it's JUST a hernia" like it's an easy fix. I hope your voice is heard loud and clear.

Brad, Carter's dad said...

Wow... I am so impressed with your wisdom already. Your journey will not be easy, I'm afraid, but you'll get through it. Even those nights that you don't think you could possibly face another day, time moves on. Kellie and I are here for anything you need, whether we're still at Duke or not when you guys arrive. Hang in there. It'll be worth it.

Elizabeth said...

Sigh - I just want it when people first hear of it - they know what it is!

I'm sorry someone said Davis was wierd - truly she is the wierd one. But so normal - many don't dig deeper they just take everything as face value. Ah - what a sad existance!