A little change

I read the last post again and decided to change the title. It was very late and I was very tired and was in a hurry to get a long post going so I could get to bed. I had just checked email before posting and was intrigued and excited that there was such a thing as CDH awareness day - so I typed a title for the post in a hurry in my excitement over the awareness idea, not the defect. In reflection, "Happy CDH Day" just doesn't sound right. It isn't as if we celebrate Gabe's defect as an ethnic difference, that just misses the point. We celebrate his life and our journey together and what that journey has brought us. We don't celebrate the defect itself. We celebrate the wonder and miracle of the human body and how God's hand has healed us along with Gabriel. We don't believe or accept that God made Gabriel or any of us to suffer or that this little change in development which had such far reaching affects was the blessing - that came later. We believe He was able to use a difficult time and painful experience for good. We celebrate what has come to us, not necessarily how it came to us. We celebrate the awareness of something we had never heard of before Gabriel - maybe awareness of this defect will help researchers figure out how it happens. As a mother responsible for growing a life inside of you - it is difficult not to wonder if I did something or ate something at just the wrong time and it allowed for this flaw in development. Is there some tiny gene that we passed along? Research has linked up folic acid and spinal chord development - so is there some supplement that can help prevent cdh? Some food or chemical that is ingested? Nobody knows. It's just one of those things and I realize that dwelling on the cause doesn't help anybody - not me, not Gabe. But I wonder sometimes, sometimes in those quiet moments by myself, or watching my children sleep. A tiny "why?" whispers on the edge of my consciousness. Awareness is a good thing, or can be if handled for the betterment of all. I didn't ask why for a long time, couldn't face the possibility that I could have done something to cause Gabe's suffering, or even end his life. But as time goes by, as he gets stronger and we all get stronger - I think the voice gets a little louder because if someday that little, single word question could have an answer, then there would be fewer babies born with such a battle to fight. Or even if the "why" isn't answered, there is the question of what now? It has been said that many learned valuable lessons from Gabe and those lessons may save lives. If that is true and even one baby is saved from death, even if not from the struggle, then there is greater purpose in all of this. We were incredibly fortunate and blessed to be put into capable hands who could do what most hospitals could not do. Maybe awareness would bring lifesaving research and lifesaving technology to more hospitals and more babies. Last Thursday we were in the pool area at the hotel, letting the boys have some fun - and wearing themselves out completely. I was sitting in a chair with Gabe, who was in a swim diaper with his Gtube and scar revealed. A woman who was admiring Gabe's smiles and excited arm waving at his brothers came over and noticed the tube and scar. She begged my pardon and asked if I minded telling her about Gabe. (I know, you feel for her already). I shared the highlights and she amazed me by telling me of a friend of a friend who had a baby in Florida with a left DH, which is the most common and often more severe and more complicated. The baby's defect was so severe nearly all of the abdominal organs were up in the chest cavity and it was determined that surgery on the fetus was the only option, or all would be lost. They didn't believe this child would even survive to delivery without surgery. From what I have read online (so I am not professing to be the expert) - this is extremely unusual, most are carried to term, delivered and then assessed. The child is now 2 or 3 years old. Amazing.

So it was not the CDH I was expressing my happiness for, but the awareness and what that awareness could bring.