Halloween was always fun, but so was any day of the year, when the children brought out the trunk of dress-up clothes! They had fun dressing up the little ones, and that certainly included Adam! He enjoyed being in on things, as long as no one startled him by touching unexpectedly. What smiles we could get out of this little boy!

   Adam loved having baths in our shower trolley. This was a shallow, foam padded tub on wheels. After I had washed him, he would lie in the tub, while I sat beside him and listened to to Mozart. And he would play with the water. He would pat the surface of the water with one hand, then pat his own chest. Then he would splash with his hand. He enjoyed this solitary play much more than he enjoyed getting washed. I can still see his face, all intent and glowing with excitement.

   Adam had two main words. "Ma-ma-ma-ma", and "ba-ba-ba-ba", always said with many syllables. I would always answer him, saying his words back, no matter what they sounded like, hoping to elicit more vocalizations. Occasionally, he would come out with surprises such as "hi-baby!" His voice was very pleasant, low and sweet. After it changed to a man's voice, it was very dear to hear my little man's voice calling "ma-ma-ma-ma"!. I do believe he meant me.

   Adam enjoyed camping with our family. He was a good traveler. He liked the motion of the van, and the talk and singing of "his" brothers and sisters. Tucked in the trailer, and later, our bus, he would sleep well, at the ocean, in the mountains, everywhere we went. He would sniff the air at the ocean, lying on a blanket in the summer. He knew he was somewhere new and interesting. But he would have nothing to do with the waer! No sir! You couldn't possibly want him to get wet or cold! Horrible! I had to laugh. I didn't try again, after he let me know in loud, outraged tones, how he felt about that!!

   Adam had very firm opinions about things. Especially things he did not like. He let everyone know when he was unhappy. Year after year, Adam grew bigger and longer. In the normal course of events, even with range of motion exercises, he also grew more stiff. His lifelong habit of going to sleep cuddling his foot was being changed. It was beyond anyone's control. At last there came a time when he couldn't get his leg up to his face any more. He wanted to tuck his foot behind his head, and stroke his face with it, but it wouldn't go. He would grab it and tug and yank and scream at the top of his lungs, in rage and despair. No matter what I did, I couldn't distract him from it. He was so strong, I was truly afraid he might break it. No one had any ideas for me. I felt so sorry for him. I put all kinds of soft toys up against his face, and he would throw them violently away. It was as though he had lost his best friend. I was helpless. Hearing my plea for help, his doctor gave me some medicine to calm him when he grew so upset.

   But apart from that, Adam was a happy and healthy boy. He was content almost all the time, had a beautiful smile, and a very cute laugh. What a sparkly boy he could be!

   He spent most of his free time sticking all the fingers of his right hand clear into his mouth, and it was amazing he did not gag himself doing this. It looked like he was playing with his tonsils! Also, he would roll his head back and forth, back and forth, back and forth. This was how he amused himself, I think. The label "self-stimulation" always has a negative tone. It seems as though professionals don't think a child should ever "self-stim". But what is a child supposed to do, when no one is presently helping them do something? They do what comes naturally. They do what they like to do, like any other child. I don't think "self-stimming" is bad. I'm not talking about autistic children here, for I don't know much about that. But a profoundly retarded child gets bored like anyone else. They are going to do whatever it is that they enjoy, when left alone. I think that is natural, and it's okay with me.

   Adam lived to be nearly fourteen years old. One day, he began to look sleepy in the middle of the day, which was not like him. I watched him closely. Then I noticed that he was having apnea spells. Adam did not have apnea, so I got him to the hospital as quickly as possible. They did a CAT scan first thing, and discovered that the cyst in his brain that was against his brain stem, had herniated. As I understand it, this cyst was like a very thin water balloon, and finally one day, it gave out the way an aneurysm does, with no symptoms at all. The water swelled out, deep inside his brain. It caused pressure against his damaged brain stem, stopping it from working, which stopped his breathing. He was put on a ventilator, and many tests were run, but there was nothing that could be done. I called his birth family, and they came to the hospital immediately. Before the tests were even over, he was brain dead, though they took a long time doing all the tests that were possible, to truly prove it. It was all so fast, and no one had time to adjust, as if anyone could have anyway. This was a terrible shock, and a deep sorrow.

   It was only after his death that doctors explained to me that children with his disabilities rarely live past infancy. They simply don't live to be as old as he was. This was an enormous comfort to me in my sorrow. He died on a ventilator in the intensive care unit. His birth family were there too. His birth parents wanted him to do something very special. To be an organ donar, and so he was. His heart saved the life of a fourteen year old boy, his kidneys saved two people. His corneas gave vision to two blind people. Adam was a gift. And then when it was his time to go, Adam gave great gifts.

   He was dearly loved, and shared by two whole families. He felt love and joy, comfort and pleasure. Adam did not know that he was missing anything, and so to him, his life was full and complete. I am certain of this. I was honored to be a part of his life, and will never forget him. Still, every time I smell the scent of oranges, I remember his face crinkling into that huge smile of pleasure! And still, every time another child plays with those bells, I remember his joy.

my own grafted branch
the sweet white orange blossoms
drift to the ground
as you become so quiet
and slowly you slip away

your curl of hair
silky soft in my fingers
this dark winter day
is all I have left of you
a tender snowflake melted


© 2003 Rosemary J. Gwaltney