09/05/11 Another Cherub Lost

While up at UCSF with Liam we met several families with CDH babies. There were a total of four of us there at one point. Last night the second one passed away. The baby was three months old today and fought hard everyday. Being up in the hospital with three other babies in the room with you, you meet the babies and get attached to them. Then you meet the families and grow fast friendships. Especially when that baby has the same condition as your own child. You watch as each baby has its ups and its downs and you share in the joy and pain of those families. Liam at one point or another was in the same room as both the CDH babies that were lost. It’s a sad coincidence. It’s hard to know exactly what to say to the families that lost their cherub when ours is doing so well. I know it must be devastating not only loosing your own child but to then watch as another child with the same condition as yours is flourishing. They must have things running through their minds like “why did it have to be mine and not theirs?”. At least that’s what I imagine going through their minds. Since I have only witnessed the loss of someone elses child I can only really tell you how I felt watching this. The day little Maddie passed I saw the caos. I hadn’t known at the time what was going on. My family had become very attached to Maddie and her family. We had been there in the same room and had seen her ups and her downs and prayed for her every night. We were there when her parent’s finnaly got to hold her for the first time. I cried. I had been overwhelmed with joy for them. We knew that very day she passed that something was wrong. We could see it in her parents eyes. We never thought for one minute that she wasn’t going to make it so it was a complete shock when we found out. I was devastated. The whole Ronald McDonald house gathered and we prayed. Later we got word that she had passed as we were praying. When we got to see her parents and saw the pain on their faces my heart broke for them. Honestly I still hurt for them. Then today we found out little Shane passed last night. We knew he was having trouble but being the optimist I am refused to think he wouldn’t make it. When we got word of his passing it was like the break in my heart just broke more. I just can’t begin to imagine how it feels to be in their shoes. I watch as Liam achieves mile stone after mile stone and can’t help but think about the ones that were lost. I pray for them and their families as well as every CDH child out there. I pray one day we’ll have an answer and a way to prevent CDH in the future. I know enrolling Liam in the two research studies about CDH while at UCSF was the right thing. I pray more families out there will be willing to do the same so that one day we can prevent this from happening to others. I know God has his reason and we’re not supposed to question him. So I pray for the strength to accept his will and the courage to move on even when the world seems dark.