Unexpected Choices

(Published in the Canadian Down Syndrome Society Quarterly Newsletter, Winter 2005, Vol 18.1)

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We were sitting in a restaurant in New York City on a Saturday night in May. The smell of garlic turned my stomach. “Chuck, I think I might be pregnant,” I said. “Don’t even joke about that,” my husband replied.

The flight home to Toronto was bumpy and I was green when we arrived. I went to the doctor the following day for a pregnancy test. 24 hours later I called Chuck on the golf course.

“I’m pregnant,” I cried into the phone from the conference room at work.

“Really?”

“Really!” The tears streamed down face.

“Don’t worry. We’ll figure it out.”

I continued to cry.

“Are you crying because you think I’ll be upset? I’m not upset.”

I continued to cry. “I don’t want to be pregnant,” I sobbed.

“Karen, you cry when you find out you have cancer. You don’t cry about babies.”

And so began the process of getting used to the idea of having a baby, my first, at 42. My husband would be 47 when the baby was born. Chuck has four boys. Thomas (13) and his brother Matthew (15) have lived with us since they children. Adam (24) was 16 when he moved in – he’s still with us too! Michael (30) had also lived with us for a while when he was 21. Nine years ago I had gone from being a single woman, to a wife and mother of 4 boys! I had agreed not to have any of my own children as Chuck was adamant about not wanting more – he had been raising children since he was 20 years old. Matthew has severe ADHD and Thomas has ADD. We’ve worked with a myriad of doctors and psychiatrists, attended parenting classes and sought out social skills training programs. With a demanding job as the Vice President of Human Resources for an insurance company, and my husband being away for 30 hours at a time driving trains, I’ve had my hands full enough! Convinced that I couldn’t love a child more than I did all four boys, I felt no burning need to give birth – especially given my husband’s propensity to produce boys with attention deficit challenges and learning disabilities!


Given my age, we decided to have amniocentesis. It was Wednesday, July 23rd when we went for the test. On Thursday evening we learned the news. Our baby had Trisomy 21 – Down Syndrome.

We were devastated. After spending eight years raising my husband’s children, I wanted a “perfect” child. I had become curious about what my genes would produce! If we had a girl would she be over 6’ tall like I was? Would my child be blessed with the ability to breeze through school as I had? There was only a 1.8% chance of having a child with Downs at my age. We had gotten used to the idea of having a baby but had talked about ending the pregnancy if there was a problem. After all, it hadn’t been a planned pregnancy. Now that the decision was in front of us, it was a whole different story.

We went back to the Genetics Department the next morning. We learned our baby was a girl! We saw the picture of the two “x” chromosomes. Such bittersweet news as we looked at the extra chromosome that would mean our child would be developmentally delayed. We were given a wonderful booklet titled, “Precious Lives, Painful Choices” which gave an objective look at the options facing us. I cried and cried as I read about the various methods for terminating our pregnancy and the short time frame we had in which to make our decision. While agreeing to a woman’s right to choose, I was horrified to read about the procedures. I wondered how we could carry on as well. Our decision to continue the pregnancy would mean a significant change to our retirement plans and I worried about what would happen to our daughter when we were no longer around.

The next ten days were agonizing as we struggled with our decision. We shared the news with the boys and wanted their input. Neither Matthew nor Tom had been thrilled to hear we were expecting. “Mom, don’t you realize that I’m going to high school this year? Babies cry a lot. When am I going to get any sleep? You won’t have time to help me with my homework.” Tom had always been the baby of the family and wasn’t thrilled about losing this coveted place. I also sensed he was concerned that I might my biological child more than him. I’ll never forget Tom’s response when we talked about how he would feel when others stared at his sister because she was “different.” He said, “Mom, it’s not her fault she has Down Syndrome. You’re always telling us that people can’t help how they’re born. If you have an abortion I think that would be setting a bad example for us.” Just when you’re wondering whether your teenagers share any of the values you’ve been trying to instill, they surprise you!

Over the next 10 days Chuck retreated to his cave. I, on the other hand, researched on the internet, spoke to several parents, and learned about the resources that would be available to us if we decided to have our daughter. We told our families, friends and colleagues. We felt very fortunate to be surrounded by caring people who respected the difficulty of our decision and offered their unconditional support. We went for a comprehensive level 2 ultrasound followed by a fetal echo. Since many children with Down Syndrome are born with serious heart defects, we spent over 75 minutes watching our daughter. We learned that her heart looked normal and she seemed to be developing just fine. In the elevator leaving the pediatric cardiologist’s office, my husband’s lip quivered.

“The more I see of her, the more I want to meet her.” He whispered.

My eyes filled with tears as I gave him a hug and said, “Then that’s what we’ll have to do.”

It’s October. Our daughter Meghan is over 10 months old. She was born at 11:27 p.m. on New Year’s Eve after 69 hours of non-stop contractions and some help from the vacuum pump! Meghan is simply beautiful and as soon as we saw her we wondered how we could possibly have made any other choice. And over 100 thank-you notes later, she has received many, many gifts from people who have welcomed her arrival.

At this point Megs is like any other baby. She’s doing exceptionally well. She sleeps through the night and always has. Her muscle tone is good, she is sitting on her own, standing with assistance, sucking her thumb, making great eye contact and rolling from one end of a room to the other. She is alert and curious and her big blue eyes attract many a passerby who comment on how beautiful she is. She’s a people magnet and has had two modeling jobs already!

We are prepared for the work we know we’ll need to do to help her develop to her full potential. But what’s so different about that? We’ve worked hard to help each of our children be the best they can be. That’s what parents do!
 

Karen Todd is a professional speaker, writer, and consultant. She can be reached at 416-284-6752, karen@karentodd.com , or visit www.karentodd.com