I wasn’t prepared to be different.
Six years ago, I didn't pay much attention to Down syndrome. I didn't know anyone with Down syndrome. I don't think I knew anyone who knew someone with Down syndrome. I had no connection whatsoever. It's amazing what can happen in six years. Elaina was born on Dec. 10, 2009. The St. Agnes pediatrician came in the room shortly after she entered the world, and told Tim and I that they suspected Elaina had Down syndrome. What?!? This couldn't be possible. It was a perfect pregnancy. She was healthy. What does this mean? We were clueless. And frankly, sometimes we're still clueless - she's a kid. Every day, we're guessing and praying that we're doing the right thing. I'm pretty confident, though, that despite the challenges it's pretty awesome being Elaina's mom.
When Elaina was born, and the doctor placed her on my chest, I looked at her and said "you're perfect." At the time, I had no idea that another doctor would tell us a mere two hours later that she's not. Elaina was born with three copies of her 21st chromosome. So regardless of what I think about her personally, genetically, she's different. When I was born in 1976, I had a congenital heart defect that was corrected with surgery at one year old. I can imagine at my diagnosis my parents were scared, confused and anxious - and there was a cure. Down syndrome doesn't have a cure. When Tim and I learned about Elaina's Trisomy 21, our emotions were so complex: You feel scared and confused, but then there's guilt for not feeling happy and accepting - and for me, those emotions took a while to emerge. I often think about those first words that I said to Elaina. Genetics is only one factor in who we become in life - some of us may be "perfect" in the classroom, and not so much on the soccer field. Elaina will have opportunities to find her perfection too, even if it doesn't exist in her genes.
A unique pleasure and pressure
Being a parent is hard work. Being a parent of a child with a disability is hard work plus additional challenges and frustrations. I cannot stress enough the importance of regular respite, or rest, for moms and dads and other caretakers who have the unique pleasure and pressure associated with parenting a child with a disability. We work so hard to teach, keep safe, soothe and advocate for our children, while discovering in ourselves a passion and purpose for this work - that we often lose ourselves. I know I have many times. Finding balance and the discipline to count myself in is even more important because this parenting road, while uncertain, is certainly long. I have to take care of myself if I'm ever going to be successful taking care of Elaina.
I don’t want to be different all the time
Elaina suited up for ice hockey this month. By the way, she's 6 years old. She wakes each Saturday at 6 a.m., bursts into our bedroom saying, "I do hockey today." I could be scared for her - because she's going to fall, get knocked down by an older player, get frustrated because skating is hard work. I should protect her, right? But I'm excited. This is an amazing opportunity for her. For years, Tim and I have heard great stories from other parents in our Down syndrome group about Baltimore Saints Ice Hockey, a league for kids with all types of disabilities – and I’m proud that now we’re a part of the Saints family.
There is another concern - a deeper one: Am I keeping Elaina from inclusive opportunities playing sports with her peers when I sign her up for "special needs" hockey? I don't think so. It would be unfair to believe that only "typical" activities are what's best for Elaina. Yes, it’s important for her to be challenged and push the boundaries of inclusion. But Elaina should get to be with people who are like her too - where she can truly go at her own pace, receive supports without strings, and feel unconditional acceptance. Disability is hard - shouldn't it be easy sometimes?
We’re all different. And all human.
Elaina attends her neighborhood school in a class where she's included with her peers. I don't know if I thought this was possible five years ago. I think Down syndrome is a mystery to people who don't know it. Many people are incredulous when I say that Elaina attends first grade or they assume that she must be very "high functioning" to have those opportunities. The fact is that Elaina has the right to go to her public neighborhood school just like her sister and brother and her neighborhood friends. She's included not because she can (though she can) but because she should. Yesterday, I read the words "assume competence." Eventually, I would like to see people show more pride than surprise at the accomplishments of people with Down syndrome and other disabilities. For too long, society has perpetuated the idea that if a person looks different, they must be very different. We are all have traits that make us different, but our humanity will forever make us more alike - let's focus on that.
About the Author: Courtney Dunevant is a local and national advocate for Down syndrome. She serves as president of the Chesapeake Down Syndrome Parent Group and works for national organization Down Syndrome Affiliates in Action. In another life, Courtney was a nonprofit marketing and public relations professional. Today (and for the rest of her life) she is mom to Elaina, Allison, and Sam. She lives with her husband, Tim, and children in Catonsville, Md.