My husband and I were blessed with our first child, Bailey, on July 24, 2009. After she was born, and about 10 minutes after I was rolled to recovery, I could see a look of concern on my doctor’s face. She came over and said, “I think Bailey might have Down syndrome…” and then I honestly can’t remember anything after that. I started crying. I thought it was a mistake. I didn’t know if I was sad or mad or angry, but this definitely wasn’t what I had planned. I still feel so much guilt and sadness over how I felt in her first few weeks of life. Why did this happen to us? Why couldn’t she just be healthy? What would her life be like? How “severe” would this whole diagnosis be?
Bailey also didn’t pass her hearing test in the hospital. They told us we would need to come back in a few days to try again, and not to worry. Clearly that is easier said than done, but we waited, we came back, and we tried again. She still didn’t pass. They recommended seeing an audiologist, so I called to make the appointment as we were walking out of the hospital. We had the appointment within a few days, and she still did not pass. “Well you know, she has Downs, so she probably won’t be able to hear very well,” he said. This is “normal,” he said.
Wait. What? All my self-pity quickly turned into anger and irritation, and I immediately wanted to fight for her. What do you mean this is normal? I tried to explain that she could hear. I tried to explain that anytime there was a loud sound—a pop can would be opened, a ring at the door bell—she would flinch. He didn’t believe me. So I did what any rational mother would do: I never took her back. I told my husband that I didn’t care how far we had to drive, I was never going back to a place that wrote my daughter off so quickly. She did indeed eventually pass her hearing test, but that situation was definitely a glimpse of what the future would bring.
We also had daycare set up for Bailey, and that fell through about 4 weeks before I was due to go back to work because “they hadn’t watched one of those before.” Yes, that statement was actually made by a daycare provider. One that actually interacts with children and helps mold their future.
Fast forward 8 years and we have had so many thoughtless comments made. So many comments that sting. So many people who make assumptions about Bailey because of her diagnosis. “I was surprised at how much she actually knows” is one that will stay with me forever. It’s hard to not get frustrated with people, but I also have a fresh perspective that it’s time to help educate. I want to help change the world not only for Bailey, but for future children born with Down syndrome—and their parents.
As we head back to school, please talk to your children about differences and acceptance. As parents, we are the ones that help shape the views that our children will have. If we don’t define autism or Down syndrome, who will? It will come with short questions. “Why does she look different?” or “Why does she talk different?” I remember when Bailey’s sister, Ellie, first asked me why Bailey talked differently than she did. I didn’t know what to say. Me, Bailey’s mom, didn’t know what to say. Do I ask her what she means? Do I say she doesn’t talk differently? What is the right response here? I spent the entire night wracking my brain with everything I wanted to tell her and everything I wanted to explain. I remember sitting down my 3-year-old with what seemed like 5 pages of material. I had prepped. I had rehearsed. This was going to be perfectly. What was her response? “Ok, Mom.”
What is my point? You don’t have to know everything about the diagnosis to help educate. You don’t have to understand any of it. You simply have to acknowledge and celebrate the differences. The more they know, the more they understand, and the more they will accept and celebrate my daughter for who she is. This is our chance to make a difference in the world. This is our chance to make the world a more accepting place. My favorite quote sums it up perfectly: “You must be the change you wish to see in the world.” ~Gandhi