Morning came, and I went first to the baby girls' room. Misty shared a room with her little sister Starr, three months younger, whom I had adopted as an infant, and who had Down's Syndrome. She had a matching white crib, a matching white dresser, and a matching balloon lamp. But there couldn't have been two little girls who were more different.
Starr stood at the edge of her crib, babbling at me. She paid no attention to her new room-mate. I gave her a good-morning kiss, and lifted her out onto the floor. She ran off
to see who was awake, and what mischief she could get into.
Misty lay on her back with her lovely eyes wide open, apparently staring at the ceiling, but giving steady glances back and forth. Every once in a while, she gave a sharp shriek of laughter, starting with her mouth closed, and opening it quickly, so that each giggle sounded like "mu-ha-ha!"
As I watched, every once in a while, her whole body would give a convulsive jerk, all her arms and legs would jerk into a fetal position, and her head would come off the bed, all in a
second. I had no idea what that was.
But this morning I was trying to figure her out. After a while, I began to talk softly to her, but without response.
Then I touched her gently. A shriek rent the room, and her entire body began quivering in something that looked like horror, including her lips, eyelids, hands, everything. She looked like she had just seen a monster. Except she had not looked at me. It was just the touch.
I was horrified, perhaps as horrified as she. Nothing could have prepared me for this. I undressed her gently, talking to her, and she shrieked the entire time, quivering all over in total horror. Her eyes never met mine.
I gave her a bath, and found she was as hard to bathe as a newly caught fish, flipping and flopping and turning, and as slippery as could be. Even in only an inch of water, she could have drowned in a second. She couldn't roll over, but she could squiggle to the side, and would turn her head so that her face went into the water.
Out to the kitchen, smelling sweet, and looking like a ruffled little doll, ribboned barrettes in her scarce hair; I tried the high chair routine again. She loved scrambled eggs, the foster mother had said. I made them, as Misty hung limply over her high chair tray, drooling.
The older children had all ready set the table, and my older daughter was pulling the blueberry muffins out of the oven. Another child got a gallon of milk out of the frig. They thanked God with me for a new day, and a new little sister. I gave the bowl of eggs to the table full of children, and they began eating.
Then I came and sat beside Misty, and talked to her. "Are you hungry, sweetheart? Baby, here is your breakfast. Here, honey, are your eggs, want a bite?" And I put a little bite in her slightly open mouth. It fell right back out onto the tray, and she set up the high pitched cry again, quivering.
None of us could believe our eyes. "Why is she doing that, mom?"
But I had no answers. "Maybe it's because she doesn't know us yet." I hedged.
I took her out, laid her on the couch, and went to get a bottle. When I got about four feet from her, her eyes glued themselves to that bottle, and she opened her mouth! She drank
that bottle down with no trouble at all, lying on her back.
I soon learned that the only way to feed her any kind of solids, was laying her on her back on the floor (because she could get such tiny bits into her, losing so much with spitting, drooling, and etc.), and carefully, carefully spooning it in, little by little, very, very slowly.
It was the best way to get the most into her. Even so, most of it ended up on the floor.
It wasn't long before I was blending up concoctions for her, cutting a bigger hole in the nipple of her bottle, and getting food into her that way. That was our best success for a long time.
If I tried to hold her, nothing worked. It was as though every human touch was a terrifying experience she had never known before.
So I decided she had never been held. I determined to teach her that holding was not scary. For the first seven months that I was her mommy, I held her snugly and gently in my lap all evening while I watched TV, and hoped that she would get used to me. She did not. She continued her high, shrill cry, and whole-body quivering in horror, through each evening, the whole seven months. Then I gave up. I knew it was going to take much, much more time than that, if it ever happened.
After the first couple of weeks, I called her caseworker, three thousand miles away, and described how she was. The caseworker was astounded. She did not know Misty, but had
relied on what the foster mother had told her. Later she thanked me for letting her know. They had gone to the foster mother's house, where the supposedly normal two year old lived, who was about to get adopted by a family who believed that he WAS normal. After testing, it was determined that he was quite retarded, with no chance of ever being normal. That adoption was called off. The foster mother was not educated, and apparently did not know what she was seeing.
I called the Children's Hospital, and made appointments for Misty to have a complete assessment done in the neuromuscular clinic. It was going to take a month to get. We were on our own.
The children quickly lost interest in her. If they touched her, she screamed, and her shrieking could actually hurt your ear drums.
No matter what I did, she quivered in horror, and shrieked. But if I left her alone, she would jerk quietly, and then laugh her short, shrill laugh, on and on forever.
I was able to obtain a loaner wheelchair while we waited for her new one. She had never had one before, and couldn't be propped in any stroller. Her legs were too long, and she was too limp. One morning after everyone went to school, after she finally got this first wheelchair, I took her to a restaurant, so I could have some coffee, and watch her reactions to being in a strange place.
She sat peacefully in her wheelchair, all strapped in, and laughed, and jerked. The waitress asked me several times if my little girl wouldn't like some crackers or something to drink. I
guess she thought I was the meanest mother there ever was. I said no, she wouldn't. It was only when the waitress touched her shoulder, and she set up a shrieking and quivering to disturb all the other customers having breakfast, that she left us alone.
Apart from that, Misty did not appear to notice that she was in a strange place at all. I drank my coffee, then wheeled her back into the van, up the lift, fastened her chair down, and
she was happy, as long as I didn't touch her.
I became very discouraged, and sad. My beautiful baby girl, dressed in ribbons and frills, with patent leather shoes that I now believed she would never scuff, was a little soul whom no one ever had known. Nor had she ever known anybody, I truly believed.
Where was this "beginning to crawl?" She couldn't even roll over. She could not raise her bottom off the ground. Where was this "beginning to play with the other two year old in the home?" She couldn't stand to be touched. She refused to hold a toy of any kind. If you tried to curl her long, slim, limp little fingers around anything, she would fling her fingers out straight again, dropping it, as though it had been something utterly repulsive. A slug, perhaps. And where was this "she loves to eat?"
No, it had become apparent to me, that I had been given a little changeling. A beautiful changeling, but a changeling nonetheless. And what was I to do with her?
Nevertheless, during that month while I waited for all the intelligent medical opinions to roll in, and teach me how to help her, I grew to love her.
She was so vulnerable, so helpless. She needed someone to love her. I studied her stunningly beautiful, sparkling eyes, which looked back and forth all the time, as though she was constantly examining her world, but never straight into mine. I memorized and admired her lovely face in its solemnity, or laughter. I watched her slender body, dressed her like the princess she was, and grew to love her very dearly. There was no doubt in my mind, that I could help her to know me, at least. All I had to do was find someone to help me learn how to teach her.
(C) 2002 Rosemary J. Gwaltney
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