In less than two weeks, five babies have died in my small online community of Congenital Diaphragmatic Hernia families. They have, as we say at Cherubs, grown their wings. Two of these babies died at birth, including one who was expected to do very well, who had all the "good" numbers that our Samuel didn't have. Two others died at just a few weeks old. Yet another brave boy lived for 11 months. I don't know what their parents feel - I couldn't possibly. I can only imagine it, having come closer to it than any mama ever wishes to.
These things affect me in ways they didn't used to - but then it was only a year ago that I had never heard of a Congenital Diaphragmatic Hernia. And I couldn't read CDH blogs for a long time unless someone else screened them to make sure there was a happy ending. But I am coming over to the other side where I can take in the bigger picture and maybe even be a support to others. So I belong to the group and I read their stories. And I let myself hear and share and hope and pray. And sometimes things just don't turn out so well.
I'm feeling so heartbroken for these families and so grateful for my Samuel. I needed to let those of you who have rallied and prayed for him know that there are other babies with CDH, other babies with other people rallying and praying for them, who fly home too soon. Blessings on their wee heads.
Oh Corinne, this is so sad. My heart goes out to these families. For a long time I used to think things happened for a reason. More recently I just think that things happen. My wish is for these families to be able to find whatever strength and solace they need at this time.
ReplyDeleteLisa
Corinne,
ReplyDeleteThank you so much for this post. When I first heard of Sam's story, I started to read another blog (I told you about it. Thankfully you did NOT read it at the time). This blog was about Sully. He was born around the same time as Sam and had many similar concerns. He lost his battle at 3mths. When I think of Sam, I almost always also think about Sully and I am reminded of something you once said to me. Sorrow & Joy are often two sides of the same coin. Such is the beauty and pain of life.
Carissa
Thank you, Lisa. And thank you, Carissa. Thank you for remembering that sorrow and joy comment. Thank you for screening blogs for me way back when. I actually started out reading Sully's blog and decided that it was too close to home... I am glad I didn't continue as I was not in any shape at that point to have known that he died.... but I am sad now too.
ReplyDeleteI just had to update my entry to note that five babies - not four - died in the past 10 days. There were three lost in three days. I don't know why we got to keep our Sam and I won't ask, only receive and make meaning and thank God.
Love... corinne
This is a beautiful post Corinne. The lost ones and their families need our support the most and I'm so very glad your spreading the word and letting others know that a happy ending for one doesn't equate to a happy ending for all.
ReplyDeleteWith Payton doing so well I think we tend to overlook the seriousness of this defect and knowing and being reminded that it is such a devastating defect allows us to spread the word and raise awareness - something that is so very needed for CDH.
Thanks for posting this,
Renee B
Words cannot express the feelings when reading this post. We echo the belief that sorrow and joy are the same coin... Thinking of you all. Love UJ & Michael
ReplyDeleteMy goodness, you couldn't have said my thoughts any better. I am another CDH mama to a survivor. My little girl is 2 1/2 and perfectly healthy **** knock on wood *****. I have been following Samuel's story, as I follow every CDH blog I can. When I was pregnant with Dakota, I too only would read survivor blogs. I just couldn't take anything else. They gave me hope. Now I read everything and I hug my Dakota every single night so tight. We stood there where those parents stood so each little angel is so very special to me - I remember every single one of them. Many prayers for good health for your little guy!
ReplyDeleteHugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH/premie/ECMO survivor