Gavin's Diagnosis

Hope everyone's week is off to a good start. We met with Gavin's doctor last week and the diagnosis that they have for Gavin is Chondroplasia Punctata and IPEX Syndrome. The meeting went well, but I have had a few rough days due to the information that we received. I think it would be hard for any mom to read an autopsy report about her son and not be upset. I've read it and studied it and of course there were things in the report that were discovered about Gavin that we did not know before. The doctors are concerned that I could have an autoimmune disorder that I do not know about that could have caused some of Gavin's problems and/or made his problems more severe. This has been hard for me because I have felt guilty. I would have never harmed my sweet Gavin on purpose, but to think that my body could have harmed causing him to have problems his a hard pill to swallow. Yesterday was a very hard day for me. One of the hardest days that I've had in a long time. I was angry and depressed. I don't understand why we were chosen to go through this. Gavin was so loved by so many people and we weren't given as much time as we wanted to show him. I've wondered if this has to happen why doesn't it happen to people who do not want their children anyways, but I've been reminded that if Gavin wouldn't have been ours, he wouldn't have changed us. Today a sweet friend read me Psalm 139 and reminded me that both Gavin and I were created perfect and just the way God intended us to be. I needed this reminder after reading Gavin's autopsy report and reading about all the things that were "wrong" with his little body. You see when you have a premature baby born with many severe problems it is hard to remember that God knew the days set out for him before he was created, that he was fearfully and wonderfully made, and that God knit him in my womb. I have held a lot of guilt and blamed myself for all of Gavin's health problems. My heart is broken and I feel that there will always be a piece missing, but I know that Gavin is perfect now. He doesn't have to fight an uphill battle everyday. My sweet husband is so amazing. He is so rational and logical. He is my rock. Yesterday, I came home from work early because it was one of those days where I couldn't do it. He listened, held me, comforted me, and made me see things more realistically. Something he said to me that has really stuck is that we have a plan and God has a plan, and obviously our plans are not the same, but we have to trust God and know that there is a purpose for this. We are working on something very exciting to help other families in the NICU. I am so excited about it and will share more about it as we get all the kinks and details worked out. Please continue to remember me in your prayers. I could use them. I hope you all have a great week.

Love to All,

Melissa