It has been a tough week in the CDH community. Because of the internet and Facebook and so many people keeping blogs the way we did with Clara, we’ve been made aware of other families across the country who are in the midst of their own CDH struggles. It’s a tough battle for each and every one of them, and unique in every baby’s fight against any number of complications. This week alone, seven babies in the US with congenital diaphragmatic hernia have died. Seven. That I know of. One baby girl in particular, Grace from Ohio, was born just a few days after Clara. They went on ECMO about the same time, had their repair surgeries about the same time and came off ECMO about the same time. Since then, Grace has fought so hard against so many difficulties that Clara never had to face. She was still in the hospital at four and a half months old when she went to heaven yesterday. I don’t know her or her family, but we have read their blog every day (www.gracescdhjourney.blogspot.com) and prayed for Grace fervently as you prayed for Clara. I had imagined and daydreamed about a day when Grace and Clara would get to meet and show each other their matching scars and share their incredible stories with each other. I wanted Grace to live. I believed that Grace would live. I don’t understand why Grace didn’t live. My heart is heavy with sadness for the entire Hall family – her parents and her three older brothers whose lives will never be the same again. It brings up all kinds of emotions in me. First of all, it makes me swell with gratitude and love and amazement for my sweet Clara and to feel intensely grateful all over again for the ways that our prayers for her have been and continue to be answered. Second of all, it makes me feel a little guilty that we get to have her. I know that doesn’t make sense and that I probably “shouldn’t” feel that way, but that’s how survivor’s guilt works. I don’t understand why our prayers were answered and prayers for Grace were not. I don’t understand why the Halls don’t get to keep their baby girl and I do. I don’t understand. I keep repeating to myself over and over and over again, “I don’t understand.” I don’t think I ever will. As I watch Clara sleeping sweetly in her pack n play beside me while our family vacations at the beach together, I wonder just how this fits into God’s plan for her and for us. When I get to heaven, I’m gonna ask. Because it just doesn’t make sense to me.
And then I think about families across the country who are getting this – and other – congenital defect diagnoses. They have a hard road ahead of them. This is a sad week with so many deaths and it would be easy to be discouraged, but 50% of these babies do survive. Fifty percent are like Clara, thriving and fighting and beating the odds. Fifty percent get to bring their babies home and go on vacation to the beach and watch their baby’s face when her toes dip into the ocean for the first time. So, for all the families out there who are in the midst of a struggle right now or are anticipating one ahead, I must say to keep on hoping. Keep on believing. Keep on asking and praying and expecting in miracles. We know that we experienced one. I may never know why we were in the 50% that we were. I may never understand why 50% have to hurt the way that Grace’s family is hurting now. But there is hope.
So, I guess my heart feels both heavy and light. There is such joy in being with Clara each and every day and I love and cherish her more deeply than I believe I ever could have if she’d been born healthy. I’m continually amazed and thankful for God’s grace to us. And I’m also just so sad for Grace and the six other families who are grieving so intensely this week. And I wish it didn’t have to be so. I suppose we have to somehow continue to trust that God’s ways and His plan is better than our own (Isaiah 55:8-9) and continue to remember that faith is hoping in things we have not yet seen (Hebrews 11:1). And until I reach the other side there will be some things that I just don’t understand…
I feel the exact same way. I couldn't have said it so beautifully, but I feel the exact same way. I think almost all of us CDH mamas do. I feel so deeply for every single family I hear about because I remember so vividly standing where they stood. I remember around the time when Clara was coming off of ECMO, I remember praying so hard that night for her- remembering how I felt when my Dakota was laying there on ECMO. I can't even explain the happiness and joy it brought to me, a perfect stranger, when she pulled through and made progress each day. It brought back memories of the feeling of walking in the front door with Dakota and how special that felt. It's funny, because I just went to the Cherubs conference in Orlando a couple of months ago and we were talking about following blogs and how they affected us, and all of us there had followed your blog and even mentioned how happy we were when Clara came home. We are a community and it's good to share the hope and sadness. I too do not understand why some babies survive and some don't. It is definitely not fair, that's for sure. I cry everytime I hear about a baby lost, I cry even more when that baby fought so hard for so long, getting so close to home, like Grace did. I don't think it will ever go away, and I don't want it to, because I never want to forget. I just pray that as time goes on and advancements are made, the survivors become much more than 50% and we get far more stories of hope and far less angels.ReplyDelete
Thank you for sharing,
Mom to Dakota 12-25-2008
Only GOD knows the reason for HIS plan ... and dear Chrissy, I don't think he will mind one day when you ask him WHY???? You are amazing and so refreshing to the soul. Keep hugging on that precious Clara ... oh, how I hope to meet her one day.ReplyDelete
i know how you feel my baby was born on june 21 with a undiagnosed lcdh though my baby never needed ecmo.i reasearch cdh and came across grace's blog i am heart broken and feel guilty to my son was only in the hospital for 7weeks i brought him home 2days ago..our babys beat the odds..your baby is a fighter and so was grace's god has a plan for everyone i dont understand his plan somtimes but ur daughter is gonna do great things..ReplyDelete
Life is filled with heartbreak, don't know why. I just know that one day, none of us will ever have to suffer again. It's worth fighting for, believing in and looking forward to. It's not for us to understand, we can't because our minds are so limited to understanding the glory of GOD.ReplyDelete