I sat there hopeful the outcome would be good, but as the seconds ticked by, I could tell this was going to be a difficult evening. My 11-yr old with Down syndrome was participating in her school’s choir concert and things felt a little off. For my readers who DO NOT have a child with a disability, can I just say for those of us who do… it is horrible when your child brings attention to themselves and their….disability.
I could tell, it was going to be one of those nights. I had dropped my daughter off in the choir room with her hair neatly combed into a bun in the back of her head, which was my first mistake. We all know she hates to have anything done with her hair. Her shirt was tucked in. She looked nice. When she came out to get in place on the risers, her hair was messy and in ponytail. Her shirt was untucked. Great, I thought to myself, people are going to think I don’t care what my daughter looks like.
As the concert began, my daughter looked everywhere but at the choir director. She looked at the kid singing behind her (yes, we looked at the back of her head for a while – nice ponytail sweetie). She then looked up at the lights blaring down on her on stage. Yes! Finally! A glance at the choir director, and a few versus sung. Beautiful – keep it up darling. No no – please no. Yep, time to tuck the shirt back in, take the ponytail completely out and then put it back in. Nice OT skills on the pony, love. But could you please quit licking your upper lip with your lower one - you look like Red Skelton. During the last song, she ended with both of her hands on her face, looking straight at the ceiling of the stage, presenting an image of “if I don’t get off this stage soon, I am going to lose my mind”. Honestly, I think I lost a few years off my life last Thursday. Everything I had worked so hard for my daughter went down the drain in front of a few hundred people.
Throughout the night, I kept praying that she would pull it together. She always performs, she’s a Down syndrome superstar – isn’t that what my geneticist told me? Not tonight. As my friends came up, I made excuses, looking for any compliment I could find. I was heartbroken. And the longer I was heartbroken, the more I became heartbroken that I WAS heartbroken. What was my problem anyway? My gosh, Val, don’t you write blogs daily about why people with disabilities need to be accepted for who they are? Included in everything, regardless? Big talker, terrible doer it appeared.
Honestly, the thoughts that ran through my mind were horrible. “I should have never made her do this – inclusion is too risky – pull back – hide – keep her out of the public eye so we never have to go through this again – it’s too hard. ” Notice all these thoughts had little to do with her and everything to do with me. I was a prideful mom with a disabled heart.
The next morning at breakfast, my daughter thanked me for coming to her concert. She was absolutely ok with everything. She had a good time, and thought the night a great success – I could sense it in the tone of her voice. What a schmuck you are, I thought to myself, but found the words to tell her how proud I was of her. She left for school and I took off for the health club to work off some unwanted emotions.
As I pushed through the physical & emotional pain, I began to wonder if I had limited my daughter’s opportunties because I was too afraid she would fail? Did I only put her in situations where I was pretty confident she would be successful? Was it her – or me – that I was trying to protect? I couldn’t escape my own feelings. I wish I wouldn’t do this, but if I am honest, I have no idea how NOT to. I don’t know how to allow my daughter to experience her life, without worrying how she will be perceived by others. Maybe that is why United Media is so important to me, and how I hope some day to convince the businesses and communities in which we live to do a better job of including people with disabilities. I am trying to CHANGE people’s perceptions, including my own it appears, so maybe we don’t have to worry quite so much when our kids mess up.
As parents, we are trying every day to make decisions that allow our kids to succeed, and sometimes, emotionally, we fail. It doesn’t make us losers, bad, or unsupportive – it just is. As it is often said, this is a journey, not a sprint. So Val, forgive yourself, and keep fighting the good fight. You’re OK.