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 We learn with all five senses. I tried all kinds of sensory stimulation activities, tactile, visual, auditory, gustatory and olfactory. I hoped to teach her to respond to something with pleasure.

My daughter smiled fleeting, bright smiles that sparked across her face for no particular reason, and not very often. These smiles were not directed at anyone, nor could they be produced by anything that anyone did, except on rare occasions. So in all the years I was her mother, I only was there with a camera one of these lovely moments.

 

 She did not respond to Christmas lights, other sights, scents, any type of music or any other sounds. She ignored touch, angrily rejected being handled, and refused to taste, spitting out any tiny tastes with obvious disgust. 

 But there was one thing that Emily did, that always intrigued me. There were firs outside her bedroom window, and she would turn her head toward the window when the wind was high and just stare up at the blowing trees. I don't know whether she saw them moving against the sky, or heard them, but she was aware of them somehow, and was fascinated by them. Or perhaps soothed. I would stand beside her bed and watch her watch them. I think this was when I loved her most - because I too love the trees, and the wind. Here my daughter and I shared something in common. Another distinct possibility was that during these times, our Heavenly Father was communicating with her. Perhaps allowing her to feel His presence, and love. For these were the only times she was absolutely calm. 

 This was the reason I did not think she was deaf and blind, although it had occurred to me to wonder, even though I was told she was not. Maybe one, but not the other. And probably only cortically so. Probably her eyes and ears worked fine, but her brain could not let her know most of the time, what they were seeing or hearing. 

 In hopes that she might change, and could learn to respond, I kept Christmas lights strung around her bed all year round. Soft music played by her all night, in case she should be awake, and hoping it might reach her. Stuffed animals with music boxes in them were set along her bed bars, around her. 

 No matter what toys I offered, or tactics I tried, I was never able to connect with Emily emotionally, with physical, visual, auditory, taste or olfactory stimulation. Not any way at all. Emily appeared to be utterly oblivious to stimulation, except when being handled, which infuriated her. She tolerated being up in her wheelchair every day, but would begin to fuss as hours passed. Her wheelchair would lean back for times like that. But her congenitally dislocated hips were painful when she was up long, even resting on a Roho cushion. 

 She certainly did know what was comfortable to her. She liked to be alone in her bed, with no one bothering her. She fussed much less when handled slowly and gently, than quickly. So I handled her slowly and gently. I thought, as the years went by, she might grow to know me. But in my nearly nine years of being her mother, Emily never learned to know me, or anyone, as far as I know. Perhaps she was profoundly autistic as well. 

 Eventually I came to believe that Emily had never progressed even to the point of newborn awareness. She did not understand what she saw and heard. She could not receive comfort from touch or food. She was somewhere in an early pre-born state, mentally. Here I had a tall, grown-up daughter who was yet unborn in her understanding. That was something new to me. I had not known that could even be. 

 Yet an unborn baby is a human being still. Even much too young to respond to anything, from conception, a human being still. Emily’s life had value, in that she had a soul. A spirit. In Heaven I will know her in a whole new way, and the seizures she endured on earth will not even matter to her any more. 

 In retrospect now, I believe she could have been autistic in addition to everything else. No doctor ever thought of that, but anything is possible. 

 In time, I grew to realize that God had surely given Emily to me in part to make me a better person. To teach me more unconditional love. To teach me more patience, more mercy, more grace. I was open to the lessons God had for me, and accepted Emily as His child. I loved her for His sake. I used to think of the Bible verse that says if we give someone anything, even as small as a drink of water in Jesus’ name, it is just as important as if we had given Jesus that same thing. So I knew that Jesus was pleased while I ministered to Emily. My gentle hands were a gift to God. So she was a gift from God, in making it possible for me to offer these humble gifts of love. 

 I keep thinking of the sanctity of life itself. The value of every human being God creates. Emily could not love me in return, on this earth. But that was not necessary. I loved her for my Heavenly Father, because she was His child, created by Him, and I know that kindness and love for the least of His, pleases Him. I chose Emily for my daughter. My daughter Emily knew comfort. She knew pain. She knew what she did and did not like. It made me happy when Emily was content. It made me sad when Emily was not feeling well. Emily was alive. A living soul. Her spirit is still alive and well now, in the presence of God. Our spirits never die. 

 Emily Rose lived to be twenty-one years old. My heart will always hold a very tender place for her. I learned so much, being her mother. In Heaven, I will get to know her as a whole and well person, and she will know and love me. That will be wonderful through all eternity. If her birth parents are there too, she will know and love them too. There is no sorrow in Heaven. The Bible tells us so, and I am so grateful that God's inheritance of eternity in Heaven is ahead of us. 

my fragile child
your life was a mystery
brilliant blue eyes
perhaps seeing angels
I miss your wordless peace

© 2003 - 2006 Rosemary J. Gwaltney