It is so much easier for me to look back at where we have been in life, than to live it the first twenty years. Back then there were minutes I did not think we would survive one more day. I would worry about teen years and young adulthood, unsure of what lie ahead and what we would face. I can smile now when I look back and know we made it, and that life turned out much sweeter than I expected and John is a perfect young adult, disabilities and all. Sometimes when I remember back, I also remember others I met along the journey and wonder how they are today, where they are and what they are like. One family I remember with a mixture of sadness and awe, I saw only for a few minutes, never knew their story or names, but the Father taught me a big life lesson.
John was three, nothing left of him but a body. I thought of him as my breathing China doll. We were at a children’s hospital, waiting to see what a study of John’s gene’s had to say. I sat down in the waiting area, John in a wagon beside me, but the wagon seemed to cramp the small waiting area so I took him out and had him stand while I tucked the wagon aside. It was as I turned around to check on standing John that I first noticed a young couple arms crossed, the Mom chatting to a lady asking her questions, the Father looking at the floor, empty and sad. Suddenly from under the row of chairs where the adults sat, a tiny girl ran, yes ran from under the chairs. Several in the room squealed with delight in the sight, even the most needy of children smiled at the tiny girl. I was caught off guard as she made a bee line for John.
“Here boy, come play with my brother!” She stopped beside John and demanded he follow her, her cartoon like voice squeaked out the command, her tiny hands on her hips, her look determined. John did not see or hear her.
“Here boy, my brother needs a boy to play with, you come here NOW!” She bossed a second time. I found my voice.
“I am sorry; he cannot hear or see you sweetheart.” I stated as nicely as I could muster. She shrugged her tiny shoulders and marched on. I watched as she leaned into a step, used her hands and arms to climb up and repeated the act to get to the Little Tykes play house. To her, the toy house looked like a normal adult sized house and I smiled to myself wondering how old she would be before she could look out the play house window.
Without warning child number two ran out from under the row of chairs, a boy who ran right to John, reached up to tug on the hem of his shorts and say, “Come play with me, I’ll let you play cars.” He held out his hand to show John a Match Box car that in his tiny hand, reminded me of the six inch metal cars John was fond of collecting, before he became lost within his own body.
“I am sorry son, he can’t play.” I told this miniature child. Like his sister he shrugged off the comment and went toward the play ground area.
“Oh they are darling, what size do they wear, did you know they were little people when you had them, and twins, aren’t you blessed!” A lady in the waiting area said to the Mother of these two tiny children.
I looked up to see where the voice came from and saw the twins Mother relax and smile, lean over the arm rest of her chair and begin to field questions about her children. It struck me odd that the Father kept his same sad pose and offered nothing about his children, then his eyes shifted to John.
“Currently they are in newborn to three months, but sometimes they fit into three to six months, my daughter hates baby looking things now that she is old enough to notice, so I had someone make her preschool looking clothing. No we were shocked, we didn’t know anyone who had little people, but we did know they were twins before they were born.” The Mother smiled as she spoke. “I am glad they have each other, I mean it’s not like there are tiny children around to play with.” She smiled wider and drew in more questions with ease.
“But they will never be normal.” The Father, still looking at John spoke, and I was not sure who he was speaking to or if he was just saying what was on his mind, he looked up, right into my eyes and said, “Just like your son is not normal.”
“Stop that, our children are perfect!” His wife chided him.
“No, perfect means playing football on a real team, driving a car, getting married, face it our children will never do any of these things, none of us in this room have normal children.”
“You know why I am looking at you and your son, I wanna know why, why did God give your son a beautiful perfect body, and nothing more, no sight or hearing, or ability to speak, nothing just a blank body and my children got it all, but the body. If I could take your son’s body and put my son in it, we would have a perfect child, and I want to know why we all got short changed.” He was looking at me then to John and back to me, his face bathed in pain.
“I don’t know.” I whispered as I sank down in a chair.
“I am sorry, overlook my husband, all he thinks is football and fishing makes a man, I am sorry, he will learn to see our children as perfect as they are, and I am sorry your son, is really disabled.” The Mother spoke to me as she put a hand on her husband to silence his speech.
“Yea it’s true, I am coveting your son, I want my son to have a body like that.” The sad Father spoke again.
“I guess I am to some degree, coveting your children, I just want them as they are, to me, they are normal.” I whispered back.
Neither of us said anything more and the room grew strangely quite. From the play ground area happy children played, two little voices sounded like cartoon characters, but there were in the mix, a bossy, demanding, self assured child.
I looked around the room, was there a disability that I thought would be easier? A little girl snuggled deep in her mothers arms, her face distorted, her skull did not grow properly I could tell. Another child looked perfect and yet I knew from the wheelchair stroller, he was not. No, I wouldn’t trade a disability, all of them were scary. Nothing was sure, easy or packed with answers. Still, something seemed easier. The twins would never lack for social acceptance; a child with Down Syndrome garnered understanding because people could see the disability knowing something was different. With John, that perfect China doll could and would break at any minute and scream, pinch, flail, rage for hours on end. Nobody understood, and nobody cut us any slack. Face it we all had a future ahead of us riddled with unknowns and answers to questions we have yet to ask.
“I wish you peace in your life.” I said to the Father.
“You too, I am sorry, I was rude, it’s just, oh God, you son is so beautiful, so perfect looking, I just wanted that for my little boy, and yes, for my daughter.” He looked wistful as he glanced toward the play ground.
“I know.” I said as I looked at the two tiny children darting in and out the play house. “I really do know.”
We were called to a second waiting area and I picked up my China doll and headed behind a lady dressed in white. I smiled but did not look back as a tiny voiced called out, “By little boy, get well!” I blinked back tears from my eyes as I heard her say, “Mommy can they fix him so he can play next time?”
I do not know any more about them. I never saw them again. Years have passed and much has changed for the better for John. One thing I learned that day is that people don’t just covet normalcy, they covet disabilities they think might be easier to deal with or would mean better social acceptance. Sometimes they say it; sometimes their faces just show it. Another thing I learned that day is we all have fears of the unknown. The lives we expected our children to live become lives we don’t know how they will live.
Nobody can tell you the outcome of your child. It’s best to just live each day for what it is and make memories the best you can with what you have. I am blessed now that every day with John is a happy one, and the memories are easier to make when the expectation of normalcy are released. Time has made this possible.
That China doll John was grew up. He turned into a very self assured all be it mute young man with a killer smile and wicked twinkle in his eyes. I don’t covet anyone or any disability these days, I am too busy keeping Mr. Personality under control, out of trouble and basking in the joy of the young adult he grew up to be. I hope and I pray out there somewhere is a couple of tiny young adults whose parents are bursting with pride in all their children grew up to be and do.
For me there will always be the memory of meeting two of the tiniest people I ever saw, and realizing that no matter what you get in life, nobody, no matter how perfect looking, gets it all. That’s the point of life, to live it, and make the most out of everything we have, every opportunity are given, and be at peace at the end of the day knowing you have given it your best, and taken advantage of everything, disabled or not.