We took the boys to the doctor today and I was reminded of their similarities and differences straight away. Their eyes are the same color and are shaped like their Dad’s. They both have cheeks for days. Ezra is substantially bigger than Henry was at his age. Ezra is a fierce little warrior with a set of lungs that can shake the roof and some serious eyes that hold you. Henry is a jolly little king with a iron will that is hard to harness and a giggle that lifts your heart. We have decided as parents to focus on how alike they are while celebrating their uniqueness as they grow.
We have heard comments such as, “He doesn’t really look like he has Down Syndrome” or “You really can’t tell he has DS sometimes.” People generally say these things in the form of a compliment. While there are certain characteristic physical features that set people with Down syndrome apart, people with Down syndrome resemble their families more than they resemble one another. Their additional genetic material changes the course of development and causes some characteristics that we have associated with Down Syndrome like round face(like his mommy), short stature(also like his mommy) and almond shaped eyes (like his daddy). It’s kinda funny and I usually just respond with something to diffuse the awkwardness like “Well, I did birth him so it makes sense that he looks like us.” To me it’s just like hearing someone say all Asian people/black people/Hispanic people/Indian people/white people/“X” people look alike.
People often will say something along the lines of, “He looks so smart!” What I hear is, “He looks so smart… for someone with DS.” While I appreciate this well intended compliment (Because he IS smart. And yes, I do beam every time someone says it), a person’s facial features and expressions do not determine cognitive ability. Just because you may perceive that someone has fewer of the characteristic physical features of Down Syndrome does not mean they have a higher IQ, and the reverse is true too.
As he has grown he has looked like both his uncles at one time or another. I see James and I in him daily in his features and expressions. He can make some extreme facial expressions that are without a doubt exact replicas of ones his daddy and uncle make, and sometimes I can’t help but laugh. We never ever wonder what the boy is thinking. I’m almost positive he’ll never succeed in poker.
I used to study his face and try to look for Down Syndrome. Almost daily I would try to force myself to see my boy objectively as the world will see him. I would wake up and look at my sweet love and think, “It’s not fair. The world isn’t fair. How will we make sure he is seen as Henry and not DS?”
And this may seem crazy to the ones outside looking in, but I don’t see Down Syndrome when I look at Henry now. Even with our schedule as a constant reminder crammed full daily of appointments, therapy, and early intervention, some days I really and truly do not think once of my son’s diagnosis. Most days I don’t see anything but Henry. I see our tasks and goals before us and nothing more. I only see my growing, rambunctious toddler full of energy and mischief who looks very much like my little brother. Lately giggling and babbling fills our home with intermittent tale-tell sounds of his destructive, curious rampages: drum sticks thwacking random objects, doors and cabinets slamming open and shut, and clattering of books and toys chipping at my hardwood floors. I am on the run daily picking up after my little explorer and most of the time I succeed just in time to hear the next mess being made. Our home is a toddler wasteland and I’d have it no other way.
And I just now remembered what this post is even about… oh, yea. This is about Henry’s Down Syndrome physical features which I do not see. I see Henry- a mischievous boy, brown hair, blue gray eyes, 2 1/2 feet tall, toothy grin, infectious giggle, prone to destroying towers of LEGO and laundry, loves smoothies and books, age 2.
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