About the author: Julie Keon is a writer, mother and advocate for children with special needs. This article was first published on Julie Keon's website What I Would Tell You. Julie’s book is due for release Spring 2015.
So many look at you and see your limitations and your medical fragility. Some want to look but turn away not wanting to appear rude. Others look too long and I refrain from telling them off. To the majority of onlookers, you are a child with disabilities; a “poor little girl” and a “very sad situation.”
Sometimes I wish they could see what I see. I don’t blame them for their limitations because before I got to know you, I, too, saw a baby that was disabled and sick and I could barely see anything else through my angry tears. As time passed, my grand wishes for you dwindled until the only thing that really mattered was that you lived one more day. That was all. The dreams I once had for you were nothing short of miracles: walking, talking, eating orally despite what our seasoned neurologist predicted. But all of those dreams slipped away with the months and then years that passed.
But as the dreams and yearnings vapourized, something even more magical took their place. By letting go of the things I wished you could do and be, I made room for seeing you as you are. As you grew, so did my perceptions of how things should be. In fact, after some time, the word “should” no longer had a place in my vocabulary. Eventually, I no longer compared you to others because I finally saw you for who you were.
I have the privilege of seeing past all of the things that everyone else can’t help but see. Instead, I see your brilliance which cannot be dimmed by a brain that doesn’t function the way it was intended to. Through your eyes, I connect with your spirit and I know that you ‘get’ so much more than we know. Your body may have you trapped unable to run and dance and skip and twirl, but when I hold you in my arms and you look right into my eyes, I see YOU, your essence and your pureness and that magnificent light that each one of us embodies.
I no longer have expectations like I used to. We have learned to just go with it; no longer burdened by developmental milestones, shattered dreams, broken hearts. My only wish now is that everyone else could really see you the way I do.
© 2014 Julie Keon