As for Dear Son, he continues to deteriorate physically but mentally seems really happy when he's engaged in "adult" activities at school. This year the focus is on age appropriate activities. His sitting days however are getting numbered. For the most part, he no longer has any trunk control to make sitting a possibility for much longer.
I remember the first time I heard his voice. It was years ago. He never talked at first. It seemed like I was talking to myself for the longest time however I knew deep inside, he understood. Our conversations, if you call them that, took place round the clock. Always one sided of course, but you could tell by his smile that he “got” it.
So today was wonderful. His voice was much deeper now, more manly. But oh, so sweet. It was only one word though, “Hi”. I called out to him and asked him to repeat it but I heard nothing. I waited some more and then asked again. Still nothing.
I got up and went to his room. There in his bed, was my son, smiling. He’s fourteen now. It’s been years since I’ve heard his voice. But this morning I woke to the most beautiful sound, “Hi”. I kissed him on the cheek and said the same words that I say every morning, “Good morning, beautiful doll”. I thanked him for saying “hi” not knowing how much time would pass before I would hear it again, if at all. Our days are growing longer and much quieter now since he sleeps most of the time.
His Dad and I speak daily. Sometimes we have the conversation on which life skills we wish he could have, if we had to choose only one. Talking and walking always come to the top of the list, but we can never figure out which one is more important. Would it be more important for Dear Son to tell us what he needs and wants or more important for him to run and play with the other boys? Our conversation is the type you have when the lottery stakes get really high and the news people ask people what they would do with the money if they won. Only it’s not a lottery and we are never going to win.
Sometimes, I dream of the conversation that my son and I will never have. I would love to hear about his day in the first person instead of reading the day’s events in the spiral notebook attached to the back of the wheelchair. Sometimes, when I am out somewhere, I envy sometimes the excitement of boys talking to their parents telling them about their day. I envy them when they are arguing too because some language is better than none. They don’t know it of course, because they are blessed. As it should be.