Leaping Over Fear and Uncertainty as I Raise My Son With Down Syndrome

A little under two months ago, I registered our son Jameson for a toddler ballet class. At the time, he wasn’t even walking on his own yet! I felt that in two months he’d be running circles around me. Although he isn’t running per se, he’s walking completely unassisted. And that is a big accomplishment!

Fast forward to September 26, 2019 while changing Jay into his ballet class attire of black leggings and a white t-shirt. It was nearly 10 a.m. and the butterflies hit. “Why am I nervous?” I thought to myself. The class wasn’t for another 45 minutes. And yet, that was exactly it, I was nervous.

Would he be OK without me? Would he listen to the teacher? Would he follow directions? Would be be kind to the other kids? Would he cry? Would he be scared?

Everything in Jay’s learning and growth up to this point was encouragement that he was indeed ready for these types of experiences. His physical therapist, his speech teacher, his Early Head Start teacher, they all tell me how well Jameson is doing and how much progress he has made. But this little voice in the back of my head was shouting, “he’s not there yet!”

Thinking about that voice now, I can label it as the voice that recognizes Jameson is different. It’s the voice that says Jameson has Down syndrome, and the droning and buzzing of thoughts ingrained in me. He’s behind. He’s not ready. He’ll be overwhelmed. He’ll get trampled over. He’s not talking.

It’s expectation versus reality. It’s that moment when what you thought something would be like turns out to be something you never even considered. It’s not something to feel shame or guilt about. It’s the same voice that taunted me when we found out our baby had a 99.9 percent chance of being born with Down syndrome at 22 weeks pregnant. What does that mean for him? It’s a loaded question with very visceral reactions.

Fast forward to the now. I loved dance as a kid and I hope Jameson loves it too! It’s scary allowing your kid to try something new and letting go of control. Jay was all smiles when we arrived; he waved at everyone and said “Hi!” When it was time to go into the dance room and take a spot on a reading rug, he did a little escaping out the classroom door to find me until they finally closed the door to the waiting room.

Jameson mostly observed to start. A few of his new friends were rather upset and had parents on and off the dance floor trying to help them calm down so they could join the class. I could see Jay struggling with how to react to their emotions. He was definitely curious as to why they were so upset and he wasn’t sure whether or not he should be upset too.

He loved the mirrors! He liked the music and even followed along when they were asked to hop and bop and do other silly movements. He got to wear a cool prince cape and prance around with a stuffed teddy bear.

It was an emotional 45 minutes for me. I had to fight the urge to go into the room and sweep him into my arms when his tears started or when he started signing “all done” with about 15 minutes left in the class. He cried, but not very much. His tears seemed to be in reaction to other little ones’ tears, rather than his own fear or discomfort. He stayed in the group class for the entire 45 minutes!

My insides were squirming with butterflies the whole time. I intended to chat with other parents in the waiting room in an attempt to make new friends, but talking without falling into a full blown sob was not an option. After a trip to the bathroom to wipe away my tears and blow my nose, I mostly kept to myself and glanced through the two-way mirror here and there.

In the end, Jameson came out of the room snuggled in the arms of one of the assistant teachers. With about 10 minutes in the class, he simply needed someone to hold him and she obliged.

His smile upon eyeing me in the waiting room made my heart burst. I swallowed him up into a big hug and fought back more of my own tears. He made it. We made it! And better yet, he seemed to have fun. The smiles and giggles were there along with his quivering lip and moments where he was simply standing to observe. He didn’t do better or worse than any of the other kids, he did what he was meant to do.

Jameson was just another kid in the ballet class. Even though my butterflies were in reaction to very real emotions of fear and uncertainty, the fact that Jameson has Down syndrome didn’t hold him back. On the contrary, he was right in there with all of the other kids battling their own emotions and fears about being in a new place with new faces. Jameson’s first dance class was a reminder to me about expectation versus reality. Life brings what it brings. We are who we are. It’s all about appreciating diversity, celebrating it and leaping over fear and uncertainty to recognize the sweet moments as they come.

“You are you and I am me, just exactly how life is meant to be.”