Over the last four years, I’ve heard or read about parents who say “I don’t even see my child’s Down syndrome anymore.”
I’m still waiting.
I’ll be honest, in the last 3 years and 11 months, not a day has gone by that I don’t see something about Moses and think about him having Down syndrome. Sometimes it’s a facial expression. Sometimes it’s because I see him working to master a new skill or doing something I’ve never seen him do before. Sometimes it’s because of something totally random and I find myself thinking about Down syndrome and him.
There have been days that I’ve wondered, “What’s wrong with me?”. Why is it that these other parents can look at their child for an entire day and not once think about the fact that he or she has Down syndrome, yet somehow I can’t?
Then last night it hit me that there’s absolutely nothing wrong with me. There is nothing wrong in me seeing my son for who he is. Seeing all of who he is. Including the extra chromosome that makes him so wonderfully and uniquely him.
Yes, in so many ways, he really is like any other nearly 4-year-old kid. He makes messes, gets into his sister’s things, throws fits, says “Mom” on repeat throughout the day, and resists going to bed.
I see that.
I also see his beautiful almond-shaped eyes that all but disappear when he laughs. I hear his muffled speech and celebrate when he says another word more clearly than he did yesterday. I see him work hard to open his yogurt by himself and cheer for himself when he succeeds. I see his smile that can get so big it takes up his entire face.
Why wouldn’t I want to see those things?
To say “I don’t see his Down syndrome.” is akin to saying, “I don’t see him.”
As if having an extra chromosome is wrong. As if there is something wrong with him being fully and completely him.
I’m no longer going to wonder when the day will come that I won’t see that he has Down syndrome. It’s a part of what makes him my Moses Alexander the Great, and he deserves to be seen.