I guess I always knew. When I thought about the worst things that could possibly happen to a person, I knew that for me, it would be to have a mentally retarded child. I feared them, I loathed them, I avoided them all of my life. I didn’t want to volunteer for the Special Olympics. None of that was for me.
By the time we decided to have our 3rd and final installment in our family, I was 35 years old. I knew there might be risks, but I figured I had just as good of a chance as anyone for having another healthy, happy boy. When it came time for genetic testing, I wasn’t afraid when they told me there might be something wrong. I was told to go to the hospital (at my convenience) and have an ultrasound there. They measured his head and thought that might be a little big. I wasn’t worried. All of my kids have huge heads. They took several more measurements and had me come back for a few follow-up visits. By then, they had a better idea, I had about a 2-5% chance of having a child with Down’s Syndrome. I rejoiced! 2-5%. That means I had a 95% chance that nothing was wrong. Really! People win the lottery with worse odds than that. We put it out of our minds until he was born 5 weeks early. He looked a bit strange because he was a preemie, but he didn’t look like he had Down’s syndrome. He came home from the hospital with no problems and no time in the NICU. Before we left the hospital, we asked that they do a blood test, just to rule anything out. The nurse couldn’t get enough blood, so we figured we’d take care of it at the next doctor’s appointment.
Ten days flew by and we went in for our first follow-up visit. My trusted doctor came into the room and asked me to sit. He proceeded to tell me that my sweet baby had Down’s Syndrome. Tears streamed down my face. The more he talked, the more I tried to listen, the more the tears came. I couldn’t stop them. All of my worst fears were in that room. I couldn’t breathe. I couldn’t hold him. I didn’t want him anymore. What? How could I think that? What kind of monster was I? How could I be repulsed by my own son? I took all of the information papers from the doctor, including the phone number of the local Down’s Syndrome Foundation and went home and cried for 3 numbing days.
In desperation, on the second day, I called the foundation and a wonderful volunteer insisted on seeing me the next day. I wanted her to wait, but she knew. She had a son with Down’s Syndrome who was 8. She knew I needed her to come. I bombarded her with questions about plastic surgery to fix his eyes or to make his tongue shorter. She was great at responding to my questions and even acted like she thought he was cute.
I sat there that night, looking at him, feeding him, crying, and wondering how I was ever going to deal with having an adult child for the rest of my life. How could I love his funny shaped eyes and his strange little hands? And at that moment, he looked at me. He looked right past my tears and into my soul. I had the distinct feeling that he was sending me a telepathic message, “Remember me, mom,” he seemed to say, “Remember I belong to you and you promised to love me and take care of me no matter what.” It was so quick, so sweet, and yet suddenly, out of nowhere, there was peace. He was my son and I promised to love him and help him. He belonged in our family. I didn’t need to know every statistic or how I could have plastic surgery to reshape his eyes. I just needed him as much as he needed us.
Now as he is learning to walk and it is almost his second birthday, we are reminded of why we named him Shane. He was born on Thanksgiving Eve and in German (a language my husband speaks), thank-you means dan·ke schoen (Shane). He is our little package of thankfulness. He has the funnest personality of anyone I know. I love to be around him and how much he loves to tease us. He has brought a joy to our lives that we never realized that we needed. It makes me laugh when he makes his strange little squinched up faces that only a child with down’s syndrome seems to know how to make. With every day that passes, we love him more and know he has completed our family.
