Loving Misty, I had learned to accept children simply for who they were, not expecting anything in return. Misty was my best little teacher in learning how to love Emily.
Almost all of my children were mid-teen age to adults by this time. Only two were younger. Emily was my nineteenth child. Because of Misty, I knew we could be a family to her no matter what she was like, and I would love her for who she was. I wasnÕt harboring any fantasies about her changing much, at the age of thirteen. What I wanted to do was make her happy. I was confident that I could do that.
Emily's torso was long and slender, though her skinny legs and arms had stopped growing at maybe a six year old size. She had tiny hands and feet. Her arms were very weak, except when she was angry. Her legs were spastic, but at least they would bend. She had limb-joint contractures. Emily could not roll, or move around in any way. Nor did she display any desire to be moved around. When she lay on her back, she had the flattest torso I have ever seen. I do declare, it seemed no more than two inches thick at her waist, from the bed to her stomach, which was virtually nonexistant. She was so narrow, I didn't see how there could be proper room for her lungs, or anything else.
Emily had beautiful lustrous green eyes, and very pale white skin. Her thick wavy dark-blonde hair had about a zillion cowlicks, and was impossible to part correctly. She would have been a tall and elegant woman, if her limbs had kept up growing, and if she were without disabilities. Though Emily was pretty, her Cerebral Palsy stiffened her facial muscles, like the rest of her body. She did not change her expression very often, or very much. I wanted so much to give her joy, and a reason to smile. That was my main goal. We had no idea at the time, that she could have Rigid Spine Syndrome, which I really believe now. She also could have had a muscular dystrophy, but we had no idea. So we set about trying to make her smile, and find love and joy in life.
When she arrived, we did everything, trying to make her smile. My son Kyle got smiles by pushing her wheelchair fast over bumps. But the smiles were fleeting, and could not be captured on film. They only happened in a flash, going over bumps!
Emily had to be strapped into her wheelchair with a chest harness and seat belt, so she wouldnÕt fall forward at the hips, which had no strength. But she could not bend or turn at the waist in any way. Her neck was rigid also. She was extremely stiff in all of her torso, and I could carry her easily across my shoulder like a 2x4 piece of lumber because of this. I have never seen anyone with a spine that rigid, unless they had had a spinal fusion. But Emily had no scars from any spinal surgery. Her spasticity was just that great. So, since anchoring her over my shoulder was easy for me, and did not bother her, that was how I carried her!
Emily had to have a drip pump, because her digestive system could not handle normal feedings. She suffered from chronic reflux. This also helped keep her from having respiratory problems, most of the time.
Emily had a severe seizure disorder. Although she was carefully followed by a neurologist, and had to be on much medication all of her life, nothing ever completely controlled her seizures. Her grand mal seizures were very violent and scary. I feared for her life countless times. IÕve had many children with seizure disorders, but none as severe as hers. ItÕs truly amazing that she lived to be an adult.
I sometimes rocked her in the big stuffed rocking chair. I would put a chair with pillows on each side of me, and her head and neck would be cushioned on one chair, and her legs on the other. She was one Ōlong drink of waterĶ lying stiffly across my lap. But no matter how I stroked her, patted her, sang to her, talked to her, rocked her, she never appeared to enjoy this. She would whimper and whine and spit, and toss her head back and forth. But I tried for years.
Emily disliked getting her diaper changed, having her hair brushed, getting her clothes changed, and even being bathed in her special padded, lying down shower-tub. She would squawk and gasp and spit mightily in protest, thrashing her head back and forth. It was sometimes discouraging, having her resist being physically cared for. I did not think she could be blind and deaf at the time, because she did not show fear at just being touched. I did not think about autism at the time. (New thoughts and studies came up later.) She did not appear to notice when I touched or patted her simply in love. This seemed so strange. But she was my baby, and I loved her.
Emily's life was meaningful, if only for the lessons God could teach others, through that life. Lessons of patience, of learning the true meaning of compassion, of learning to love unconditionally. Her body and mind were terribly disabled, but her soul was not. She had a spirit, whole and perfect. God does not create disabled souls.
© 2003 - 2005 Rosemary J. Gwaltney