Down syndrome is the most common chromosomal abnormality occurring in humans. It happens in about one out of 1,000 births. My daughter was born with a third copy of the 21st chromosome, giving her Trisomy 21, or Down syndrome.
July 16, 2012 would be a changing day in our lives. Ten fingers, 10 toes, a light dusting of blonde hair, tiny eyes, nose, and lips. Everything was perfect, down to her crooked pinky fingers. We were so excited, crooked pinkies are a trait in our family, now one of my babies would carry on this quirky trait.
The Diagnosis
The following morning is now just a memory of what may have potentially been the most devastating day in our lives. The pediatrician came in around 7:30 a.m., stated he had spent about 30 minutes with Tori and he would be ordering a series of tests to verify Down syndrome. There was no warning — no “Hey, Matt, you may want to join your wife on her bed for a minute.” He just put on his boxing gloves and punched us in the face.
The next few minutes were a flurry of emotions. There is no easy way to deliver “bad” news, and unfortunately for us, there was more to come. A few hours later, we received a diagnosis of a major heart condition. Our little Tori not only had Down syndrome, she also had a full AV-canal defect and possibly would need emergency surgery on her aorta.
The night after we received her diagnosis, my good husband lay on the super uncomfortable couch in my hospital room and cried. It was heart-wrenching. Since that night, I don’t remember him ever crying again over her diagnosis. I wish I could say the same for me. I cried a lot during those early months. There is a grieving process to go through. We mourned the life we had envisioned for Tori. We did not know what was in store for her, or for us.
Fast forward six days of very little sleep — and what seemed like 100 doctors and a million questions — we were finally going home with our little “something extra.” We, undoubtedly, had the best nurses and doctors throughout the first week of her life. They were loving, supportive, and knowledgeable.
A Primer in Down Syndrome
My daughter was not my first relationship with Down syndrome. I grew up in a small town in Alaska. In Haines, everyone knows everyone, and in school it was no different. I was one of only 20 people in my graduating class. Ten of us had been together since kindergarten. In the class below me was a boy named Michael.
During elementary school, Michael and I were in the same grade. He was often pulled out of “regular” class and given additional help and education more tailored to his needs. As we grew up and progressed through school, we grew more distant. But I never forgot his determined independence, unfettered joy, and fearlessness.
Soon after Tori was born, I called Michael’s sister-in-law. She told me about one time when he got mad, jumped on his bike, and took off with his dog. They found him a few hours later 10 miles up the road, tired and hungry. Michael was not intimidated by discomfort or difficulty, nor was he stunted by the neglect of his peers.
Down syndrome is not a diagnosis I would have ever chosen, but I can say without hesitation: I am glad we have been given this little girl to raise. She loves unconditionally. She loves school. She loves to make others happy. She loves her friends and teachers. Her tenacity is infectious; she tries so hard at everything she is tasked with. For her, it is so easy to love without expectations.
New Normal, Same Hope
We learned early on not to dwell on benchmarks and things that she wouldn’t do. Instead we focused our energy by providing her with every possible opportunity. We learned to not take little things for granted and rejoice in seemingly simple successes. When she walked at 16 months, we celebrated. When she came home reciting the Pledge of Allegiance, we reveled.
Tori will be expected to work hard and do well in school just like our other two kids. The difference here is the impact she has on those around her. Tori, unwittingly, has taught many people in so many ways: Each soul has worth, every person is beautiful and lovingly created, and every person has the opportunity to put his or her stamp on the world.
There will be a day when I have to explain the cruelty of others who mindlessly use hurtful words, but I fully expect Tori will be doing the greater share of the teaching at that time, as she continues to live unabashedly and without apology.
My hopes for my daughter may have changed from the day she was born, but not that much. She will have a place of her own, a job, and a group of friends. I know this because the day she was born, we became a part of one of the best tribes of support one could ever desire.
I look forward to many more years of successes and failures and just watching Tori spread her wings and fly to where life takes her.
The Fort Worth Moms Blog hosts 20 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.
Azure is a 43-year-old wife of a commercial pilot, and mom to three awesome kids. She is an Alaskan girl living in Texas — and just happened to have a child with an extra chromosome. She currently serves as a board member for the Down Syndrome Partnership of North Texas and is this year’s Step Up for Down Syndrome Walk chair.
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