I’ve been trying to write this post for most of the day. I kept getting knocked down by various things. I had both girls to their respective schools, I had just completed a run (my first in a month!), and then bam-o…I got hit with a migraine. I woke up this morning feeling great until I read my Twitter feed & saw that yet another sweet baby had lost her battle with CDH. I’m not sure the official number, but it’s at something like 5 or more newborns in the last week who haven’t survived this tragic birth defect. The news brought back the flood of emotions we went through over three years ago when our youngest was born & diagnosed with CDH. The up & down rollercoaster of wondering: Will she survive the day? Will she be well enough for surgery soon? Will surgery help her? How big is her lung? Can it support her little body? Will she ever come home? What did we do to cause this to happen? Why didn’t they catch this on the sonogram? Why us?
A lot of people have heard about Brooke’s journey with CDH. In fact, a lot of you were probably there with us when she went through it all. But I feel like I HAVE to keep revisiting those 2 months of worry, and the subsequent years of worry afterward, so that I DO NOT FORGET. I don’t want to forget simply because, although we are out of the woods for now, there are many, many, many other families who are not. Many will not bring their babies home. Many will never have a Brooke like we do. And many, like us, will never know the why unless we keep promoting CDH to everyone we know, begging them to help us spread the word & do some scientific research.
Brooke is a miracle. The fact that she is alive is a miracle. We don’t ever want to lose sight of that fact. So as much as I may bring up her story over and over again, don’t ever expect me to stop. These sweet families need you. A quick thing you can do RIGHT NOW is go to www.voteforcdh.org & vote for CDH research projects in the Pepsi Refresh project. No cost to you, just your time. Thanks for listening.
Now on to the photos….
We took these a while ago for Cherubs (the CDH support organization). Their logo utilizes angel wings for the “cherubs” – babies born with CDH. Brooke graciously poses in them for me. The hope with these photos, and the many others that various other photographers have donated, is that people will realize there are “cherubs” all around them and they may never know it. Usually, the only visible sign that they have gone through this journey is a scar on their belly. And with these photos, we hope to raise awareness about this silent killer of precious little lives.
