Today, I found out that a beautiful little girl with CCMS passed away. "Miracle Maggie," as her parents referred to her, lost her battle on February 15th. She was 7 months old and never made it home from the hospital. I think this was the saddest part for me.
I have had the privilege of speaking with Maggie's mom over email several times and find we have lots in common! Both parents are elementary teachers and have been trusting God through this situation. Her parents wrote a lovely letter on their blog describing Maggie's last moments and sharing their feelings. Unless you've ever had a child connected to tubes and wires 24/7, you can't understand the freedom they mention. I definitely lost it at that part.
Matt and I were reminded today just how much of a miracle our Abby Girl is. While it's easy to become engrossed in the is today the day? question, we try so hard to enjoy every minute we have with our daughter. This is a definite reminder to us to be thankful.
Please pray for Maggie's family as they deal with their loss. My heart breaks over the death of any child, but I am truly broken for this family I've never met.