March 21st is World Down Syndrome Day. A year ago I had no idea such a day existed, let alone that I had a sweet, little two-month-old reason to be recognizing it, celebrating it. Last March 21st, we were in the beginning stages of noticing that our baby seemed to have a few little “challenges” that we would eventually learn were related to low muscle tone. Last March 21st, he was just barely starting to regress on the growth charts. Last March 21st, I had no earthly clue that our perfectly behaved baby was 4 months away from being diagnosed with the very thing I wasn’t aware was being celebrated that day. Last March 21st I had no idea I was living with, caring for, and absolutely in love with someone with Down syndrome.
Reflecting on this past year brings to mind so much. It reminds me of the uncertainty-the unanswered questions before the diagnosis. Why is he so small? Why can’t he sit up or even hold his head up well? Why does he have this funny breathing problem? Then came the discussions with the pediatrician when he was 4 months old, then 5 months, then the decision to draw blood for tests. The uncertainty continued as all she would say was “we’re doing a chromosome analysis.” Then the test results were delayed. We had to wait for weeks-trying not to worry…
Perhaps I was naive. Maybe I should have been expecting it, but hearing the doctor say: “We got the test results back and they did show something; Luke has Down syndrome” hit me like a ton of bricks. I literally felt my stomach drop and my head spin. My eyes immediately started to sting and it took every bit of strength in me to hold it together in that exam room. Steven simply said, “Okay, what do we need to do?” He’s amazing. I remember the doctor discussing some of the possible health issues we needed to be aware of; she had already scheduled appointments at Vanderbilt Children’s Hospital to have his eyes and heart checked. Suddenly my baby could have heart defects, thyroid issues, hearing or vision loss. “I know it’s a lot to take in, but do you have any questions?” All I could do was shake my head “no,” still barely holding it together. Steven spoke when I couldn’t. Then the nurses came in to draw blood to check his thyroid levels (another common health concern for people with DS). Steven held him as they poked his tiny arms trying to find a vein. I watched from the corner of the room through burning and blurry eyes. “Downs babies tend to be a hard stick” I heard one nurse tell the other. I know she didn’t mean anything by it, but my emotions were raw and hearing that comment was one if the toughest moments I’ve experienced since receiving his diagnosis. That was the first moment he was actually labeled as special needs. That was the moment it started to become real.
During my special ed classes in college, I remember my teacher stressing the importance of person-first language. She taught us not to speak of a “downs baby” or an “autistic child.” We were to speak of babies with Down syndrome, and children with Autism. And I learned it, but it wasn’t until that moment in the doctor’s office that I understood it. Luke wasn’t a “Downs baby,” he was MY baby. He was the same happy, sweet, 6-month-old who we had brought into the doctor’s office a couple hours prior. He was still Luke.
The next couple of days were really hard on me. Once we were alone in the car, I let the tears flow. I let the grieving process begin. Steven made the phone calls to our families-never a crack in his voice, always positive, so incredibly strong. He was absolutely my rock while I grieved. And it took a while. It took a couple days of putting up a stronger front for others and then letting my emotions flow when my family and I were alone. I remember rocking Luke and holding him so tight while I cried and cried and thought: “How could I not have known this about you? How could I not have been giving you what you need all this time?” But as I started to get used to the idea, as Steven assured me over and over that this really changed nothing, my grieving lessened. It lessened more and more with each appointment that showed healthy eyes, healthy ears, a healthy heart. It began to dissipate completely with each day that passed with Luke happy, healthy, thriving. And that brings me back to March 21st.
This March 21st is different. This year World Down Syndrome Day finds us with 8 months of Down syndrome “experience” under our belts. It finds us with 8 months’ worth of appointments, meetings, and therapies. It’s amazing what we’ve learned in that time about Down syndrome and about Luke. To me, this day means acknowledging what we’ve learned: the genetics of it, the particular ways that extra chromosome manifests itself, how much these ways vary from person to person. Most importantly, we’ve learned the particulars of how this extra chromosome affects our Luke and what we need to do to help him overcome his extra challenges. To me, this day means celebrating Luke’s accomplishments and how he met all of the goals we set for his first six months of therapy. It’s about celebrating what a hard little worker he is. It’s about appreciating all the help we’ve been given and the love we’ve been shown. It’s about the friends we’ve made, the community we’ve discovered, and the support system we’ve found. It’s about how wonderfully his brothers and sister treat him and take care of him.
Most important to me, though, is that I’ve learned and am recognizing more and more each day that Down syndrome is just a part of who Luke is. It is a diagnosis, not a definition. I was trying to explain this to someone the other day but was having trouble putting it into words. I was trying to explain how I don’t look at Luke and see Down syndrome first. I do see that he’s developmentally a little behind most other kids his age, I do see the therapy sessions he has each week, I do see that he’s still small, is barely starting to cut teeth, doesn’t yet say “mama.” But these are just all part of Luke and who he is. When I look at Luke I see a super sweet, 14 month old boy who loves to eat, take baths, play patty cake, and bear-crawl on his hands and feet. I see a kid who absolutely adores his siblings. Down syndrome has become an afterthought. It is no longer in the front of my mind when I look at him. It is no longer on the top of my list of worries. This past year has taught me so much and enlightened me in so many ways. I still have a long way to go and I know that Luke will never stop teaching us. I pray that I will always be open to learning these lessons.
First, Luke is a child of God, our number three baby, a little brother, big brother, grandson, nephew, cousin, friend. Second, Luke is someone with Down sydrome. That’s what I’ve learned this past year. That’s what March 21st means to me.