Cerebral Palsy, Medical, Motherhood, Personal, ,

“What’s Wrong With Him?”

I like to think we all have certain “triggers”. Triggers can be anything but they are just certain topics or events that when discussed or brought up, strike a chord or touch a nerve. I believe how we respond to those topics, events, or situations is what defines us as a person.

If I am being honest, I have a few topics that when discussed, I completely shut down. I change the topic or I will get really quiet and not contribute anything further to the conversation. I think it’s a defense mechanism and I am not quite sure why I respond that way, but I assure you I am working on figuring it out through time allotted for personal reflection and therapy (not ashamed to admit that I see a therapist). I’ve found that one topic really touched a nerve and I didn’t respond how I usually do. I am not sure if it is a form of growth or if I felt a “Mama Bear” moment coming on. I assure you, I responded nonetheless and I surprised myself in the process.

Mark and I were in the waiting room at his therapy office just chatting away with some of our other “frequent flyer” friends. One woman, we will call her “Jane”, brought her daughter “Emily” to see a feeding therapist. In addition to Down Syndrome and Cerebral Palsy, “Emily” has a number of conditions that show just how incredibly strong this little girl is. “Jane” and I bond over our children and their progress. We discuss goals and milestones and how our children, although both have Cerebral Palsy, differ in ways of their other conditions. We are very supportive of one another and love to cheer each other’s children on- especially when our therapies cross paths or in passing in the hallways.

During one of our catch-up sessions, we noticed a woman and her son were filling out a mountain of paperwork. They were obviously new patients. They were sitting down in the chairs that were pressed up against ours. Her son was playfully interacting with Mark. They were laughing, smiling, and playing peek-a-boo with one another. The boy’s mother began a casual conversation with “Jane” who was sitting next to her. She looked at “Emily” who was sitting in her stroller, smiling and clapping her hands. The woman gave “Emily” a look of disapproval and did not encourage the conversation any further. She looked annoyed and frightened, scooted over one chair over, and began to strike up a conversation with me.

“How long have you been coming here?” she asked. “We’ve been coming since my son was discharged from the NICU at 4 months old. He’s almost 2 years old now, so quite a while.” I responded. She just frowned and turned her attention toward Mark. She gave him the same look of disapproval that she gave to “Emily”. She glanced up at me and she opened her mouth and unloaded a bunch of questions. It was rapid-fire, one after another. “How old is he?”, she asked. I told her his age and she said “Oh… my son is 11 months old. Your son is so small. Why is he so small? My son is huge compared to him. My husband and I aren’t very tall so I don’t know where he got that from. Does your son have any teeth?”

This form of comparison small talk continued until she got down to the final blow, and ultimately asking the question she really wanted to have an answer to. She continued, “I don’t know why we are even here. Its not like we need to be evaluated or treated for anything like some of these other children. I’ve seen some severe cases come in and out of here. I would hate for that to be me. My son is just so good and I had a perfect pregnancy. I don’t even know why we are here. So why is your kid so small? Why are you here? What’s wrong with him?”

My dear reader, when I tell you I almost snapped, I mean it took every ounce of energy to not go off on this lady. I was flabbergasted at her question. I mean… I felt like my jaw hit the floor and I probably looked like a trout with my mouth being open like that. I was in disbelief that just came out of her mouth.

I just stared at her blankly and thought carefully about what I was going to say next. The only response I could muster up without crying was simply “My son came into this world very early. The fact he is here and doing as well as he is is a miracle. Some families weren’t as fortunate to even make it home from the hospital. But we are here today, as we are every week so that he can improve and get stronger. I think it’s safe to say that is why we are all here. I’m glad your child is doing so well and seems to be very healthy. Thank you for asking how my son is. Please, have a lovely day.”

I turned to Mark and I just moved him a little closer to me. I held him a little tighter. I felt my blood pressure rise. I felt anger in my heart. I was hurt. I was livid. Who did she think she was asking me that question? I feel like there are just certain things you should never ask someone you just met; their salary (unless they are applying for a position and you’re working in HR), their political views, their religious views, or what is wrong with someone.

Soon enough, the woman was called back for her son’s evaluation. A woman and her daughter who were sitting across the room from us heard the entire thing. The woman saw my frustration. The woman came up to me and said I handled it better than she would’ve. Apparently prior to Mark and I’s arrival, the woman who I was speaking to about our sons, took one look at the other woman’s daughter and asked what was wrong with her.

For any parent, or even non-parents that feel the need to ask a special needs parent “what is wrong with you/ your child?” We have an answer for you and it is simple. Nothing is “wrong” with our children. They’ve overcome more than most of us will in our entire lives. They may look or behave differently. They may be bigger or smaller than your child. They may not be able to walk or speak. But we work at it. Our children work at it. What is wrong with you that you feel the need to ask “what is wrong with your child?” 

*Some names have been changed to protect the privacy of a good friend and her child*