I was 18 weeks pregnant when I received the phone call with the results from the amnio. The doctor simply said he was sorry and I was having a male child with Down syndrome. I felt as if the bottom had fallen out of our world. We had tried for months to have this baby and the entire family was excited and anxiously awaiting the new addition.
Bruce and I spent the next week reading everything we could find on Down syndrome. We spoke with a genetic counselor and switched prenatal care. We had a few short weeks to make a very difficult decision.
Bruce and I were warned how difficult our lives could be having to raise a child with Down syndrome. We also learned that the majority of people in our situation do not continue with the pregnancy. Most of our friends and family said they would support our decision either way. At this point in the pregnancy I started to feel the baby move for the first time and I knew my decision was already made. Bruce, however, was not yet certain. He was very concerned about the potential health problems and at this point we could not agree on how to proceed. I just needed someone to reassure me that I was making the right decision.
A few days later I was discussing the situation with my grandmother. When I told her about the decision we had to make she couldn’t believe it. She too believed very strongly that this baby was a gift and that you couldn’t simply throw it away. That’s all I needed to hear. I had the support I needed from someone very dear to me. I allowed Bruce the time he needed. He came to me one day and said he was looking at this like a business decision, that the downside prevented him from truly seeing the upside. Once he was able to come to terms with this, he said he felt as though a huge weight had been taken off of his shoulders. We were having a baby!
With Ben’s arrival just a few short months away, we still wanted to learn more about Down syndrome. I contacted NADS and they sent out a wonderful packet of information including a book for our 4-year old daughter Jessica called Our Brother has Down Syndrome. Through NADS I was also assigned a support mother. When I learned she had an 18 month old son with Down syndrome, I couldn’t wait to meet him.
We invited Lisa (my support mom) her husband John and son Jack over. When they arrived we couldn’t take our eyes off Jack. He was an adorable baby who was crawling everywhere. He seemed to really take to Bruce. He allowed Bruce to hold his hands and walk him throughout the house. During the visit Lisa and John answered all our questions and shared with us their experience so far with Jack.
This meeting was definitely a turning point in my pregnancy. Instead of being unsure and nervous, Bruce and I were both confident and excited again. If Ben was going to be anything like Jack, we knew we could handle it. We also had Lisa and John as a great resource for future questions.
When Ben arrived on June 27th weighing 8 lbs 2 oz we knew our lives were blessed. He was a beautiful blonde haired, blue-eyed baby. He looked very healthy and soon after the doctors confirmed that he was just fine. We knew 50% of children with Down syndrome had heart defects, but Ben overcame those odds and he would overcome many more in the next year.
Ben was evaluated and we started therapy when he was 2 months old. The weekly visits have been an educational process for Bruce and me. Things we both took for granted with our daughter Jessica now had to be taught to Ben. Using his thumb, for example, when picking something up was a huge accomplishment.
Ben is now 18 months old and walking everywhere. He says “dad” and “mama” and is constantly babbling. We can’t thank his therapists enough for all their hard work. We are continually learning new activities to practice with Ben to help him keep progressing. Jessica is an active participant in therapy and plays games with Ben during the day that were suggested by the therapists. Our Nanny, Edith, is always asking what can be incorporated into playtime. Could Ben really become a linebacker at the University of Wisconsin?
Ben has changed all our lives in many ways and I couldn’t imagine life without him. His big sister Jessica used to wish she had Down syndrome so she could be just as special as her brother. We found ourselves having to explain that we were all special in our own way. Even though Jessica didn’t have Down syndrome, she was still very special. Over the last year and a half she has become very protective of her little brother. On a recent car trip Jessica asked if Ben was going to look different than us. We explained that although Ben looks like us, there are certain characteristics children with Down syndrome have. Her next question was, “Are children going to make fun of him?” We explained that they might. Her response was that she would introduce them to Fleeber and Fluber, her two fists, if they made fun of her brother.
Bruce and I have recently become support parents for NADS. We look forward to the time when Ben can add the relief and comfort to a family like Jack did for us.
Our family will continue to grow and change as Ben progresses. Ben recently became a big brother and I can only imagine what an impact he’ll have on his baby sister’s life. I know as a family we lovingly embrace every moment and thank God he gave us his greatest gift, Ben.