Consider Pure Joy

A couple of weeks ago we visited her geneticist team. Honestly, they were of no help or comfort considering everything they told us we had already read. When they came into see her, they took her picture and asked if they could do a research paper on her. A parent dreams of their child succeeding in life and making the newspaper, winning an award, being successful in whatever they do. No parent should have to give permission for their child to be written about in a medical journal. When they asked us, Elizabeth and I just looked at each other. They left the room and we discussed it and decided that if helps another family who discovers this disorder, then it’s worth it.

Our geneticist told us that they won’t see us for another year. Once this heart situation is fixed, we’ll most likely get Reese a sleep study because most children with this syndrome have sleep apnea and need some type of help breathing at night. Once all of this is done, we just keep focusing on her development and watch her respiratory health. Pneumonia is the biggest worry for us this coming winter and we’ll have to keep a close eye on her vitals to avoid anymore visits to Kosair.

So that pretty much catches us up with our precious Reese McClain. With everything I’ve written these last few posts, I might not have painted the best picture of our situation. It’s not easy but I do want to make one thing clear. My wife and I are bible believing Christians and believe Reese is a gift from God. Everyone is made in God’s image and while we in our society don’t consider her normal, she is normal to God. He has a plan for all of us and his story is bigger than our own. Reese is part of that story and he has in trusted us with his daughter. It’s not easy to turn something like this over to God, especially for a control freak like me. Yet with each new setback, medicine, test, or worry, I pray to turn it all over to him because giving glory to him is all he wants.

Thank you for reading our story and we appreciate everyone’s kind thoughts and prayers. Keep an eye out in this blog as I post more updates, news, pictures, and maybe even some fun randomness. God Bless.