The Doctor Didn't Follow Protocol After Our Down Syndrome Diagnosis
Going to the self-help section of any bookstore is rough. You go because you have something that needs fixing, right? So you’re pretty excited because you’ve committed to at least this part of the process. Then the books like “Overcome Your BIGGEST Fears!” begin to pop out at you. You know if you just read these books, you too will achieve that success and overcome your biggest challenges. But after a few weeks of reading and a lack of quick improvement, you’re either back where you started or in an even worse place.
The big words in these book titles sell you on them, but I don’t believe they’re based in our realities. I believe they create an unrealistic expectation that might actually end up being worse for the person facing a major challenge or “mountain” in life.
When we had our son, Henry, over six years ago, we were faced with our biggest “mountain.” Henry has Down syndrome. It’s an impossible task to explain how a parent feels when they first hear the news. When Henry arrived, we didn’t know he had Down syndrome. We asked the question immediately after delivery because a previous ultrasound indicated that he might. The doctors and nurses assured us there was nothing to indicate he did, but they would do a blood test to be sure. They added they were 90 percent sure he didn’t. With that, we felt some relief and enjoyed holding and snuggling this beautiful new boy.
Our pediatrician arrived within a few hours to check Henry out. We had never met this woman, since we had only been in this town for nine months. She looked Henry over, handed him back and said, “Well, I am about 80 percent sure your son has Down syndrome…”
As our hearts descended into the pits of our stomachs and tears began to well up, she added these words: “…and that is awesome!”
We looked up, confused, as she turned around her laptop and opened it up. She showed us pictures of her daughter who has Down syndrome — a beautiful young girl, 5 years old in pigtails, playing soccer, cheering and seemingly having a blast in life. A slight smile began to invade our shell-shocked state.
This was the first time we realized our mountain was being minimized — not overcome, because we both still had a ways to go to fully understand and accept this, but minimized. We also began to believe that perhaps this choice of pediatricians was not so random, and that she was meant to be in our lives. We still have a close relationship with our pediatrician. She has given us guidance and understanding we feel we wouldn’t have received elsewhere within our community.
In the days, weeks, months and even years ahead, I began to look back at our process of acceptance. I noticed so many times and ways we minimized our mountain. They came in different forms and at different times. There was never a single moment, but many amazing, wonderful moments. It came in the meals our friends made for us, educating ourselves thoroughly, the local Down syndrome support group providing a gift basket, meeting other parents in our situation, getting to know people with disabilities and so much more.
To this day, I have not nor do I wish to “overcome” having a child with a disability. That initial mountain of ours has become the greatest thing that ever happened to us. Henry has inspired all of us, and it’s hard to express the love and happiness he provides each day. We minimized our mountain so we could manage the hill, and we found a way to come out stronger and happier on the other side.
Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!
Rob speaks around the country with his shows, “We Need A Sign,” “Minimize The Mountain,” and “How Bout…Just Treat Each Other Right.” He is the author of the book “What I Should Have Said,” and founder of the charity, Stand Up For Downs, which exists to enhance the lives of those with Down syndrome through humor. He lives in Ohio with his wife, Ellen, and two sons Charlie (14) and Henry (9).
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