Thursday, June 18, 2015

June 18 2015

Today is my son Christopher's birthday . He is 26 years old with the brain capacity of a 2 or 3 year old. He doesn't speak, except for a few quotes from movies he's seen or signs that he's read, or words he's prompted to use when we want him to ask for something he wants ("nobody has to make trouble. Is this a joke?,uncle frank, miss piggy. Or we say "I  want...",to which he rarely replies, or"I which he responds,love you." He can read, but what he understands is anybody's guess. He seems to understand language, because he will do most things you ask him to do(close the door,let the dog in, go to the bathroom . But still after 20 odd years, he will stand in the shower without moving until I tell him to get the soap and wash off, and after that to rinse off. He likes to watch the same DVD over and over again(Sesame Street Old School Volume 3). I know it by heart. Things must occur in a specific order,in a special place with predictable outcomes. Certain foods must always be available ,and easily accessible (Cheerios,peanut butter,water ). If someone yells at the dog, or his needs are not met or his schedule has been disrupted , or his medication is wearing off , he sometimes has a full blown tantrum,even to the point of tears. Remember this is a 6 ft tall 185 lb. full grown man screaming and carrying on like a 2 year old .And there's not much you can do about it, except to wait for it to pass. The good things? He is gorgeous , and most of the time he is happy. He is gentle and loving, and is constantly kissing us. He knows who we are and is always excited to see us. He demands little,takes his medication without complaint, and lives most of the time in a group home,which he took to like a duck to water, 10 years ago. We bring him home on the weekends, and go see him  2 nights a week. I wouldn't trade him for anyone, but in my heart of hearts I wish he'd been dealt a better, less difficult life. Life is so short and so difficult when you don't have such a challenge , where you have all your faculties about you. How much more so when you can't ask for or communicate what you want or need. Or maybe when you don't even know what they are.
So Happy Birthday Christopher,my sweet love,and may the angels guide your way.

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