More than eight and a half years ago, my whole world changed. I became a mother for the first time. That should have been enough, but no, there was much more going on. My first son was born, with a head full of crazy blonde hair. He was red and wrinkly and pissed as all get out after being removed from his mama via c-section. He was beautiful.
And we soon learned that he had Down syndrome.
Boom. World stood still.
Even though I was in a foggy, drugged haze, I can still hear the doctor on call trying to explain to us that Alex was “mentally retarded” (I still cringe on that one) and that he would soon be transported to the local children’s hospital because they also suspected that he had a hole in his heart.
The doctor left, unscathed by his harsh announcement, and we were left to digest the news. Although I wasn’t supposed to be up and moving around so soon after a c-section, the nurses loaded me into a wheelchair so I could sit and hold my baby before they took him away to the other hospital. I feebly smiled for photos, which they gave to me, and watched them pack Alex up to go in the ambulance. As the nurse wheeled me back to my room for the night, the only thing I could do was ask for another cherry popsicle, and she happily obliged.
The next morning, Mark left me to go to the children’s hospital to see Alex (my parents had spent the night with Alex so he wouldn’t be alone), and I was left to ponder what exactly was happening to us. We didn’t have any idea that Alex would be born with Down syndrome; we were expecting a typical birth, a healthy baby boy. I didn’t know the first thing about Down syndrome, I was a first-time mom, and I was panicking.
My dear OB/GYN (who, even though I only see him once a year now, still asks me how Alex is doing and is a big Team Alex supporter) was just as floored as we were, and I remember him checking on me in the hospital and crying right along with me. I didn’t quite know why we were crying; I think I was probably just scared to death, and he felt bad. He generously discharged me from the hospital early so I could go be with Alex in the children’s hospital NICU, and I arrived to give Alex his first feeding (he had been fed through an IV until that point). Shortly after I arrived, everyone else left to give me a moment, and I began to panic again and feel sorry about the situation. I think those feelings lasted about 30 seconds, because as I looked down at my beautiful son I realized that there were never any guarantees. Nobody could have ever promised that he would be an all-star athlete, drive a car, go away to college. But, I promised him right then and there that if he wanted to do those things, and more, I would do everything in my power to give him a fair shot at it.
I’ve spent the last eight and a half years working on that promise.
March 21st, or 3.21, is World Down Syndrome Day. It’s a day to raise awareness that individuals with Down syndrome are equal participants in our communities, and should therefore be treated as such. It’s a time to let others know what Down syndrome is, and what it’s not. For me, it’s a day to be thankful that I was chosen to be the mother of one of the very best people I’ve ever met.
Alex demonstrates true joy, love for his family and friends, and passion for his favorite activities. He laughs from his toes when he thinks something is funny, and sings for all to hear when the mood strikes him. On a daily basis, he teaches me love, patience, and compassion. When he was born, I became a mother, an advocate, and his biggest fan. I’m quite certain that he will continue to teach me much more than I could ever hope to teach him.
I hope you’ll join me in celebrating World Down Syndrome Day. Wear crazy socks to raise awareness (“Rock Your Socks”). Check out our Team Alex fundraising page at www.columbusbuddywalk.org (I will launch it very early on 3.21!). Reflect upon the importance of inclusion for every single person in our society, not just those who fit the mold of the “typical” person. Be a friend, an advocate, and recognize how individuals with Down syndrome are more like us than they are different.
For my Alex, it will probably be just another day to enjoy school, spend time with his family, laugh, and command us to “shake your tushie!!” (one of his signature lines). It will be a
good phenomenal day.