The Gift of Respect
Essay Excerpts
Aidan’s Gift
“The nurse thinks he may have Down syndrome.” From where I sit now, I can split my life in two. There’s the time before we heard those words, and the time after. Before, we were probably like most people. We knew we were lucky. We were healthy. Our little boy, Timmy, was funny and strong and happy. We had jobs and a loving family. But until we were hit with those words, I don’t think we had any idea how fragile that luck can be.
What to Do With A Boy
Terminate. Abortion. A baby was moving around in his mother’s womb while his mother considered those words. I found it ironic that I had always described myself pro-choice, but now I wanted no share of this choice. I questioned what our world had come to, that a mother would be put in this position. I couldn‘t stop my tears, grieving for the health of my child. I didn‘t know what to do. I stared at the ultrasound image. Would this be the only picture I ever had of my first child?
On His Thirteenth Birthday
There are a few things that we thought you might be able to do by now. Things like riding a bike, conversing with us, verbally expressing your feelings, and reading more fluently. Instead of getting caught up in disappointment that you aren‘t doing these things, we have learned to correct our “compass setting” by looking back to you. by bringing our bearing in line with yours, we are able to celebrate what you are doing. Instead of mapping out your path, we join you on your journey.
Belonging
She was a sleepy little one, unconcerned about the world around her; there were no typical bursts of crying that I had experienced with the other children. The sweetest hand wrapped around my finger felt as soft as silk. Upon careful inspection, I traced the long line down her palm as I glanced at my own hand and reflected upon the differences. These differences didn‘t matter. She belonged with me.
Oh, Yeah?
I was angry that the perinatologist had been so aggressive and intrusive in my private affairs, especially at a time when I was so vulnerable to the power of suggestion. My husband was furious as well. It was like the doctor was following some script from a textbook, with zero respect for our individual situation. She wants to terminate, I could imagine her telling the OB. Oh yeah? I wanted to shout in her face.
From Generation to Generation
I was full of doubt, full of worries, full of sadness. Down syndrome was a vast unknown for us. Would my family find it an honor to name our child for Grandpa Ben? Or would they think it an insult to his memory? Grandpa had been smart, witty, athletic, industrious, generous what could we hope for from our new baby?
Different
People tend to make themselves more comfortable by assigning words such as special when they refer to Parker—as in, “That special little boy the Hodson family has.” Why can’t they refer to him as that cute little boy, or the incredibly courageous little boy? Let’s face it: special is a word set a side for those who are different. I wonder if this perceived difference will influence how much association they or their children will have with Parker. Will he be invited to birthday parties? Will play date invitations be accepted? Or will he just be too special?
It’s Better than Good
I silently count the number of syllables he has just spoken, smile in amazement at the clarity of each letter, and laugh at the wonderful sense of humor our son has. I quietly thank our speech therapist for giving us the tools to guide Nash to this step in language, and drive onward. When Nash was two, I would have given the world to hear any clear words from him. Now that he’s five, I sometimes wonder if he will ever be quiet!
Mommy
“She has a heart defect,” he explained, “and she has Down syndrome. We have to fly her to Labonheur Children’s Hospital immediately.” What was supposed to be one of the best nights of our life turned into complete hell. I cried all night, thinking I would never hold my daughter, or even get to see her. I prayed until morning, and didn’t sleep at all. Shane stayed with Alexis all night. I felt so empty without her. I felt like it was all my fault.
Acceptance
The day I came home from the hospital, the early intervention team called to tell me about physical and occupational therapy. I was astonished at all that was expected of my little son, and of me. I am the mother of four other boys; I thought nothing could shock me anymore! But I realized my new beautiful son was going to need our help and I was determined he would get it. This was my first step towards acceptance.
Sunshine
When I finally brought Carter home from the hospital I began to notice that people had a very strong reaction when they met him for the first time. It didn’t matter what sort of mood or frame of mind they were in, as soon as they met Carter they seemed happier and just wanted to be around him as much as possible. All he has to do is smile at a person once, and he has them wrapped around his cute little crooked pinkie.
Who’s Winning
Sean’s volunteer partner was a woman who had recently retired and wanted to learn the game of golf. She was petite and blonde, in her late fifties, wearing an expensive golf shirt. Her golf bag looked like a pro’s. I could tell she didn’t know many people who had Down syndrome. At first she spoke slowly and loudly to Sean, as if he had a hearing impairment.
