I am exposed to sadness and heartbreak often in our CHARGE group and the journey of Max's special friends...but this video on Eva's site really struck a chord with me tonight. I just broke down crying watching it...especially the second song.
Sometimes I forget all that Maxwell and his friends have had to endure. When you are so in the middle of it, you forget how intense and crazy this journey of special needs can be on a daily basis. Just this past week, yet another little girl with CHARGE passed away suddenly. She had been sick in the hospital for a week and then was discharged. A week later, her mom left the room for a few minutes to brush her teeth. When she returned, she found her daughter not breathing.
Why does this happen? And what will I ever do if this should happen to my precious little boy? The thought of losing him is so incomprehensible to me. I simply cannot even "go there" and have to remain in denial that it could ever happen. I know that his body has issues and I am well aware of the statistics, but yet I cannot ever imagine saying goodbye to his sweet smile...his beautiful inner spirit...his playful attitude. I cannot imagine ever saying goodbye to this most precious miracle.
Ok tears are welling up again...must sign off. What an emotional night this already is.