My Sparkly Baby Boy

 Joshua was a wonderful, beautiful baby, and a very rewarding little son. Except for his frequent vomiting and distress from reflux, he was a very happy child. He knew me and loved me. Every morning when I did not hear him cry first thing, I would tiptoe into the nursery to check on him, hoping he wouldn’t hear me. I was always hoping to crawl back into bed for a minute. But he would hear the whisper of the door brushing across the thick carpet, and he would curl in a ball of giggles, and by the time I got to his crib, he was in a full belly laugh! His beautiful brown eyes told me “I KNEW you were there, mom! I HEARD you coming!” Oh, those sparkling eyes! I couldn’t fool this little boy. He was wise to my tricks!

 Joshua loved to be played with. He loved sleeping with his mama. He loved the few toys that moved themselves, so he could wait as the parts came around, and mouth them. He loved the Christmas tree, and being pushed into it, so he could smell the pine, and lick the ornaments near to him. He spent countless happy hours with his face in Christmas trees! If I thought he was done, and pulled his wheelchair back, he would whine, then whimper, then build up for a full-blast protest, making it clear to me that he wanted to be pushed back in, so he could play with the tree some more!

 He had an extensive vocabulary without English. He had chortles, gurgles, squeaks, shrieks, roars, all kinds of tears, moans, sighs, sweet coos, chuckles, belly laughs, and just plain helpless giggles, with every pitch and emotion to go with them all. I understood his language, since he had been busy teaching me since infancy. I got pretty proficient in “Joshua-talk”. He had no trouble at any time, conveying his emotions to me. He was the best at that of any of my children with profound retardation. He was SO aware! Perhaps they were wrong, and he was not profoundly retarded. Perhaps we could have been pleasantly surprised as he grew up. But we never got the chance to find out.

 Joshua loved Pink Panther. Any sight of any of his Pink Panther stuffed toys being wiggled near him made him curl in a ball of giggles! He also loved furniture being dragged across the room. In order to get a big beautiful smile for a photograph, all a person had to do was to drag a chair across the floor. Instant gorgeous smile!

 He went crazy over MTV. Every wildly made-up face that came up close to the camera, he just KNEW was precisely for his benefit, and would laugh and laugh and laugh. I bought a TV and put it right by his bed, so he could have this marvelous experience every night.

 Joshua had a favorite toy. It was a painted wooden platform with thick springs attached to it, and upon each was a brightly colored wooden ball. This platform was a music box, and when I wound it up, it would play a song for him while it went slowly around, each spring slowly bobbing. He would lean his face toward it, and stick out his tongue. He watched each wooden ball as it slowly, slowly came toward his face. He would lick it carefully as it went by, then move his attention to the next one. Joshua couldn’t use any part of his body to play except his head. He used his tongue to play.

 At school, they had a toy fireman that would climb a pole for him, if he would push his head against the button, which was installed in his headrest. He would push his stiff arms and fists against the wheelchair tray, to help him raise up his head, and push his auburn curls against the button. What a triumph when he achieved his goal - and made the little fireman climb the pole!

 His teacher, Cilla, was so wonderful! She was so eager to help him learn cause and effect, and be able to make something happen in his world, that was fun! She did a fantastic job!

 Then one morning, my beautiful, happy little boy was gone. As sudden and unexpectedly as that. Just gone. Joshua had never slept that many hours in his whole life before. But we slept in adjoining rooms, and he had not made a sound. In the morning, when I went in to him, there were no giggles at the sound of the door opening. His dear little, nearly-six year old body was stiff and cool. His eyes were wide open, and horribly bloodshot. His hands were open, reaching out toward the sky. His mouth was formed in an "O" almost as though he had seen something - like maybe, an angel. A look of amazement, not fear or pain. I searched his little face in shocked disbelief, hoping so much that whatever had happened, he had not suffered pain or fear. There was hope for this, because he had not moved his legs. He slept with a pillow between his legs, and the very first thing he always did when he woke, was to kick that pillow away. There are no words for my horror and grief.

 It was completely inconceivable. I had tucked him into bed as usual the night before; how could he be dead? No sign, no warning. At first I couldn't bear to think of his dear little body being cut, but I did decide to ask for an autopsy. I needed so much to find out what on earth had caused my little one to die. It showed that he had died two or three hours after having been tucked into bed the night before. His reflux had caused his esophagus to be chronically swollen, and it had swelled his trachea shut while he slept. No one had known that his esophagus was chronically swollen. This was the reflux which was not bad enough to warrant surgery??? Oh, my little boy, my precious son. My beautiful, loving child.

 Oh, my little one, how I wish I could come into your room again, and hear your all-consuming giggles of pleasure at my presence. If only I could hold you in my arms again, and rock you in our rocking chair. You gave me almost six years of dear and precious love. How I miss you!