Neo, sooner or later you’re going to realize just as I did that there’s a difference between knowing the path and walking the path. – Morpheus, The Matrix
Almost three years ago, I wrote a blog called The Red Pill. I answered the question, “If you could take away Mia’s Down syndrome, would you?” My answer was no.
In three years, a lot has changed in my family. I read my old blogs and think, “You should have known the tsunami was coming.” But I didn’t, and that’s okay. And in this particular blog, I wrote, “No one ever promised an easy life.”
In two days, Mia will be five years old. Since I wrote The Red Pill, Mia has been through preschool, daycare, and has now started K4. Three IEPs and therapists. Three different teachers and then daycare teachers. Two echocardiograms, a set of orthotics, blood draws, endocrinologists, a night in the emergency room because she wasn’t able to breathe during an episode of croup.
So now that I’ve walked down the path for a few more years, having to let go to different people, being immersed in a new reality both at home and school, and starting to really see what all of this means for the future. Would I take it away?
Disability is terribly unfair. It’s incredibly difficult to watch Mia struggle. In fact it just sucks. It sucks. The fact that Mia has a disability that is all encompassing sucks. There is no sugar coating it. I can wrap it in rainbows and unicorns, but it doesn’t suck any less.
There are experiences that she may never have because of her disability. College, marriage, motherhood. All of it was written before she was born. A mistake in cell division. One little extra chromosome.
Disability is terribly unfair.
But would I take it away?
I wish I didn’t have to fight so hard. I wish I didn’t have to be constantly vigilant. I wish I didn’t have to worry about her being accepted. I wish she didn’t have a heart defect. I wish that she would start talking more. I wish she wouldn’t have to struggle.
But here’s the thing. Wishing away Down syndrome is wishing away Mia.
As I said in that other blog, Mia isn’t sick. She didn’t develop a disability over time. The very blueprint that makes her who she is has a tiny extra chromosome.
Who would Mia be without Down syndrome? While her disability doesn’t define her, it’s part of her.
From her sandal toes, to her flat nasal bridge, to her trans-palmer crease, to her slanted eyes…to her stubbornness, kindness, independence, and spunkiness. Down syndrome is part of every bit of who she is. At the same time it’s not who she is. She’s a little paradox. And that’s what makes her so … her.
Because life is better with her, exactly as she is.
So once again, even three years later, I’ll take the red pill.