Christopher turned 35 in January and has Phelan-McDermid syndrome. When younger he would lug out an old chalkboard, bat, baseball, NY Yankees batting helmet and a NY Yankees baseball cap. One tree was 1st base, the woodpile was 2nd, another tree was third and the back stoop was home. He would place the baseball cap on his head, take the field and toss the ball up and catch it three times. That was playing the field.
He would then switch to his batting helmet. Pick up the bat and ball. Toss the ball in the air, hit it, run to first base. Pick up the ball and bat and repeat. If he missed the ball when batting, that was an out. When he made 3 outs and the side changed and he took the field. And the batting helmet came off and the baseball cap went on!
This was a game he made up on his own!
He would stop from time to time, to take a drink from his water bottle or to give you an update on the score! There were times he won and times he lost. When the game was over, he made his way back inside, give you a recap of the game while he was carrying in stuff back into the house.
One of the highlights for him was when we would go to the beach and play wiffle ball. His slides and rolls to get to the base with grins from ear to ear were priceless. Sand flying and all you saw was his smile.
We had never heard the word regression. When it came, we were blindsided. We were never prepared to lose our fun loving son. He was empty, quiet and withdrawn. He needed assistance for all daily skills, fatigued so easily and just simply existed.
Changes were made and in the past 6 months we have seen a very slow return of some skills but struggled with consistency.
But yesterday was the high point of this journey. Christopher finding a stray baseball in the yard and then playing the game he enjoyed gives us hope that we will recover more. #PhelanLucky #neverstopbelieving