Our family did a lot of camping. Camping with Misty was delightful. I just changed her diaper, gave her her bottle, and left her alone. She loved camping! She "mu-ha-haed" the whole day, and slept the whole night. She was content and happy. That was the life she wanted. It was very interesting to watch how happy she was when left pretty much alone. I continued the talking and tummy touching, though, so she wouldn't forget.
She loved to travel, too. She could sit in her wheelchair for a thousand miles, and do nothing but jerk and laugh her sharp little laugh. You couldn't ask for a better traveler.
The summer Misty was turning four, she developed seizures that became more intense and frequent. The hospital tried medication after medication, to no avail. She became less aware, and, to my dismay, that summer, she lost her vision. No more did she see the bottle coming. The nipple touching her mouth only terrified her. She could not remember it. And after that summer, she never saw again, that I was aware of. No one could explain it to me, though I asked all the doctors up at the clinic. But no one could argue with me either. After all, they had never believed she had ever seen at all in the first place! Actually, the neurologist had finally carefully explained to me that she was cortically blind - meaning that her eyes worked, but her brain was unable to interpret or remember what she saw.
So I guess the first time she saw us, and gazed intently into our eyes, one at a time for so long; and the fact that she could see and understand the sight of the bottle for four years were true miracles.
But I was so sad when what little vision she had displayed, left her. Now I had to face the fact that she was never going to look at me and know me by sight. However, I always approached her with the same touch, same talk, and I was determined that some day she would learn to know me by touch, smell, sound - something! And that some day I would be able to make her laugh. I was determined to give her joy.
Even after they got her seizures under control, she fought the bottle with a passion of fear. So, refusing to eat, she began to lose weight. She had registered far under the norm on the hospital's charts ever since I got her, but now the progress we had noted, was fading, and the nutritionist was called in. She said Misty must have an NG tube, and get fed some extra healthy formula that she refused to drink by mouth. Well, I knew all about NG tubes all ready, because of her little brother Joshua, who had been my second very special baby to adopt, but who was ever so much more social than Misty. That is to say, he had more cerebral cortex, and he knew and understood things. Joshua had arrived eleven months after Misty. He had had to have an NG tube from very early on.
Along with Misty's NG tube came a rapid rise in body weight, and the hospital was very happy.
Well, time went by, and my beautiful princess stayed lovely to look at. No one could tell how badly damaged she was, to look at her, except while she was jerking, at which time her mouth would fall open, her eyes widen, and look in different directions, and yes, at those moments, you could tell. But apart from that, she remained so beautiful, that I gazed at her as an artist would a favorite painting, perhaps. Just loving her.
One happy day, she and her little brother Joshua, both of whom had lived with NG tubes taped on their faces for so long, went in to the hospital on the same day and got gastrostomies. Now they had tubes implanted in their tummies, so no stared any more, and asked about the tubes in their noses. No one asked inane questions while I fed them any more, like "is that tube for breathing?" Also, they were safer. Tubes in noses have to be put in just right, and not pulled out a fraction, before or during feeding, or else the formula would go into the lungs, which would be life-threatening. Misty was happier too, because she did not appreciate having a tube put in her nose.
Tubes in tummies can be tucked out of sight, and are a great help. Misty and Joshua were in the same room in the hospital, and back home in two days. Neither one showed any distress or discomfort at all.
I was very happy. Misty's life, and mine had just become much easier.
Then, when Misty turned five years old, a marvelous thing happened! When I was rubbing her tummy on day, she laughed! And I don't mean her normal sudden shriek! I mean an enchanting, little-girl giggle, all bubbly, with a beaming smile to go along with it! This was the first time she directly responded to me!
I was scared out of my wits. I was afraid it was a one-time thing. But no, from that point on, she giggled every time I rubbed her tummy. So I began to roll her long, limber body back and forth, by rolling her tummy, and found, to my absolute amazement, that the longer I rolled her back and forth, especially on the waterbed, but also in her own bed, the louder came her darling, normal-sounding, little-girl giggle! Misty, had at last, truly come to know me! It had taken two and a half years!
I was absolutely thrilled!
(C) 2002 Rosemary J. Gwaltney
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