It’s a warm, sunny day and the kids and I decide to try out the new water park a couple towns over. I have begun to take for granted that we are an expected sight in our little town and few people pay us any mind. Everyone recognizes us and rarely are we confronted by uncomfortable stares. You would think being 8 years in with a child with special needs would have toughened my skin and such a thing as 50 pairs of eyes watching us walk through the water park to find a place to leave our things wouldn’t phase me. Let me tell you, it is just as awkward now as it was when it first became obvious she was much too big to be a baby sitting in a stroller.
The pain always catches me off guard. I believed I had felt about as much agony as was possible in regards to Emma, but the extreme discomfort of witnessing someone judging your child and maybe even making fun of them is indescribably painful. My first instinct as a mother is to protect. I feel angry and want to shelter her from the rude stares, the parents shushing their children’s questions of, “what’s wrong with that girl?” My next feeling is sadness and hurt, for her, for my boys, for me, for our family. “Will she ever be accepted for who she is? Will people always stare at her like she is an alien? What will happen when I’m not there to protect and shelter her?” Once I plow through those initial feelings, my thought is always, “If only they knew her. If only they knew our story and could see her sweet smile in the morning when I get her out of bed and she sees me for the first time that day. If only they were there in the delivery room when she suffered her first seizure and all my hopes and dreams came crashing down around me.”
This has happened to us often and I slowly grew to dislike the way it left me feeling; resentful we couldn’t experience things like other families without stares and angry at people for their ignorance and often, blatant rudeness. If there is one thing my daughter has taught me, it’s that every challenge we face is an opportunity to learn and grow as a person and most of the time, these challenges are made much less so when we do use it for this purpose. I knew there had to be a way for me to work through this so it no longer stole our joy during outings. I also knew that people’s reactions stem mostly from fear and lack of education in regards to the special needs population. Of course, the brain knowing this is quite different from the heart feeling it. Still, was there a way for me to turn these uncomfortable situations into something positive for us, but also the people we were encountering? Could I educate and be okay at the same time?
From these thoughts, ideas formed that if I could somehow introduce people to Emma and our family without having to say anything, it may ease some of the tension during these interactions, and open the door for people to ask questions and embrace acceptance. I created cards that had a brief introduction on the front of them of Emma and on the back contained information about her rare gene mutation and the medical issues that accompany it. I began carrying these little cards everywhere with us and started handing them out at the places we frequented the most. Our favorite grocery store, the pharmacy, and her brother’s school all got some. When I caught someone staring, I handed them a card with a smile on my face. Before I knew it, we couldn’t go anywhere without someone stopping us and saying, “Is this Emma?”
The response to these cards has been inspiring and heartwarming. It still isn’t easy for me to see someone staring at Emma and sometimes I have to remind myself of the reasons they do it and make a conscious effort to continue spreading awareness and educating. I know, though, that choosing education and kindness over isolation and anger has helped turn something painful into an opportunity for everyone, including me, to learn and grow. The journey has been long and uncomfortable and continues even now. More often than not, I am rewarded with reminders from the people in our community. Today, I pulled up to the pharmacy window and the tech greeted me with a warm smile. I pushed the button to roll down the back window so she could see Emma and say hi to her. I sign for the medication while Emma makes the tech laugh with her raspberry blowing. We wave goodbye and then I slowly pull away from one of our weekly, mundane errands filled with joy.