At last the day came for the great appointments at the Children's Hospital. For six long hours, all kinds of people studied my child. Doctors, therapists, a nutritionist, a social worker, a rehab specialist to order her a wheelchair; everyone saw her. They asked the same questions, over and over again. So I explained over and over again what I had been told about what she could do, and what I had seen so far.

The doctors spread her out nude on the table, spraddled like a dead frog, while she shrieked her high-pitched quavering cry - a "brain-cry", they said; and checked her range of motion which was perfect, because she was as limp as a cooked noodle.

They watched her body jerking. Jack-knifing, they called it. Infantile Spasms, they said. Very bad. Impossible to even control with medication. But they did start her on some, to try to help.

The jack-knifing spasms, they said, meant she was profoundly globally brain damaged with infantile myoclonic epilepsy. She would never eat properly, or play. She would never crawl, or even probably roll over, never walk, talk, or know anyone.

The the neurologist came in. He strode over to my sweet tiny daughter, waved his hand briefly in front of her eyes, casually said "oh, she’s blind" and went out without another word.

I sat stunned. Then angry. Then enraged. How dare he tell me like that? And he couldn't be right, when she opened her mouth every time she saw the bottle coming!

At last the social worker came in. "We think you should send her back." She said, as unemotional as a robot.

"Never." I said, quietly, politely, and firmly. I took my helpless, precious little daughter, wheeled her out, and we went home.

I had never been so angry. I fumed, I yelled, I hollered, I cried all the way home, while Misty, in her chair behind me, laughed, oblivious.

I had not fought for so long, loved her so long, paid so much money for her (though that did not matter), prayed for her so long, just to send her back! No! No! No! She was my baby, the same as though I had given birth to her. She was my little princess. God had given her to me. If she could never do anything, at least I could dress her beautifully, and she would be my only daughter who would not wreck her clothes!

She finally had a mother of her own, a family of her own; security. She just might surprise people some day, by getting to know us. And if she didn't, I would love her anyway. She was God's baby, and I loved her for His sake. She was as precious to Him as anyone else on earth, and He had trusted her with me for a mommy. I wasn't about to let either of them down.

So, attempting to do everything right for her, I called and got the ball rolling to send her to an early intervention program for disabled children under three. I knew the program well. Surely these good teachers, and dedicated therapists could show me how to help my child. Maybe she could learn to roll over. Maybe she could learn to know me. Maybe...

For the next few months, I sat in the waiting room every day while she was worked with on the other side of a partition, three mornings a week. All those months, every morning she was there, she never stopped shrieking. They laid her over a huge ball, to get her body used to moving in space, or something; they did many kinds of physical therapy. I felt like a traitor, delivering my innocent baby to them again and again. It was a hideous experience for me, and worse for her.

But then they tried to force me to stop feeding her with a bottle. They said I had to make her age appropriate. Children who are nearly three years old, eat with a spoon. They told me that if she did not have a bottle, she would learn to eat. I knew she would, instead, starve to death. She had been steadily gaining weight ever since I began blending our own dinner food, mixing it with milk, protein powder, and vitamin supplements, and giving it to her with the bottle with the big hole. She had been growing stronger, and I felt she would be healthier. Her weight gain had also pleased the Children's Hospital.

The school tried to force her to learn to sit up, but her shrieking continued, every day, until all the other babies cried too, and who can prop up a cooked noodle? I felt that no one was being honest with me. No one discussed her real problems, and they were holding out a bunch of unrealistic expectations, as I understood by then. I saw the other babies walking, talking, and I began to understand that this developmental center had probably not ever had a child like mine as a student.

After several months of the screaming, seeing nothing good happen; only trauma, I pulled Misty out, and brought her home again.

That, I decided firmly, was not the way to help her.

Now that I had searched out all the professionals, and none of them were any good, to my way of thinking, I tried a very laid-back approach. Misty’s way. I bought her a waterbed, laid her on it, and let her be. I watched her, but did not bother her. She clearly enjoyed the motion of the water every time she jerked. Her face would light up with joy as she was gently rocked on the warm water.

I touched her tummy only after talking to her, for play, and waited, as the months rolled by. Then at last came a time when she would let me touch her tummy with only a little quivering, and whimpering, but no screaming!

So I graduated to a small rub round in a circle on her tummy, talking softly all the while. In time, she let me do that too.

But still, every time I had to pick her up, change her diaper, dress her, bathe her, put her in her wheelchair, she would scream and shriek as though she were being murdered. I thought that she was not able to comprehend what was happening, and could not remember from one time to the next, what had happened. However, there was her acceptance of my quiet tummy touches. Now THAT was progress!

(C) 2002 Rosemary J. Gwaltney