The invisible elephant in the room

I've begun to notice that when I'm out and about with Gesina, people are starting to realize she's different. Often I get the "awww, she must be sleepy" comments when people try to engage Gesina in conversation and it seems as if she is ignoring them. Or when people see me carrying Gesina who is obviously not "helping" by latching her legs around my waist and has her face buried in my shoulder. Gesina has water therapy every week at the Y on Friday mornings. She loves water therapy! While she's in the pool there is a water aerobics class for those with the aches and pains that come with age. Gesina loves to listen to them chatter and they tend to enjoy seeing her as well. Last week one of the ladies came to me out in the hall (the viewing area so I can see Gesina's progress) and she said watching Gesina just breaks her heart. She asked what was her diagnosis so I filled her in. She was so sad for us! I let her know that it's okay, mom's like me are fine. We think our kids are perfect just the way they are and really couldn't love them more than we already do. She seemed dubious but somewhat comforted by that but it made me think.

When Gesina and I go about our business, those who see us see the "big elephant" in the room. Gesina is different. She defies what they anticipate from a child her age. She isn't following the script or norms society has laid out for her. This is unsettling so people tend to seek a reason (sleepy? and as she get's older, just what is wrong with this kid?) as to why this child is different. When they realize they don't have enough information, they may ask, make assumptions, or worse, panic and quickly look away. Gesina's differences is the elephant in the room for them. The thing is, her difference isn't an elephant in the room for me (or Gesina so far). We go through our day modifying how we do things, taking pleasure and joy out of what we can and living in the moment with no thought to what the future holds. So when we cross-paths with someone new, our mind is on regular everyday minutia when their mind may be obsessing about making sense of Gesina's differences.

So what does all this mean? Well, my pre-Gesina self was overwhelmed with anxiety when I came across an individual with a disability. What do I do, what do I say, where do I LOOK, how do I make sense of the elephant in the room!! Now, on the other side of that experience or at least as a mom pushing the wheelchair, I can finally give some insight. We don't see the elephant. We've accepted the diagnosis, the treatment, the outcomes, the prognosis. We've moved on and are just trying to enjoy the day. So there is no need to address the elephant in the room, it's invisible to us. Instead, react as you would to anyone that doesn't have a huge elephant sitting in front of them. Comment on the weather, a smile, a neat shirt; heck, a cool wheelchair. You are not belittling an individual with a disability by looking past their disability. Gesina and I are bombarded with information on her condition at every doctor's appointment (every three months we revisit 3 specialist doctors and her pediatrician) and every therapy session (4 sessions a week with 3 or 4 different therapists). Any given stranger isn't going to tell us anything we don't already know by addressing the elephant. Also, while I am an educator and am happy to raise awareness, I'm also just a mom who want to be sure her daughter is having a good time. So when we are just out and about, feel free to connect with us by ignoring the elephant. It's okay to look Gesina in the eye and smile. She may not react the way you expect but at least by treating her like a nearly 2 year old, she'll have ample opportunity to learn how to react like a 2 year old. I once heard a doctor say that if you treat your child like she's blind, she'll be blind. So I intend to treat Gesina like she is a 2 year old, so she can just be a 2 year old. And with that, I leave you with her Halloween outfit. This silly girl LIKES tutus!