This is your last chance. After this, there is no turning back. You take the blue pill – the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill – you stay in Wonderland and I show you how deep the rabbit hole goes. – Morpheus, The Matrix, 1999
Every now and again a certain question comes up: if you could take away Mia’s Down syndrome, would you? It’s not an easy question. You would think it would be simple, and maybe a year ago it would have been a simple answer for me. Still very raw from the diagnosis and first year, I would have said, “Yes! If I had a choice, I would ‘cure’ Mia.” I would have downed that blue pill and the story would have been over. I would have had my hypothetical child and moved on.
But what Mia has isn’t a disease. The extra chromosome is a part of her DNA. The very blueprint that makes up everything that she is has been intertwinded with an extra chromosome – from her slanted eyes to her sandal toes. It’s not just that Mia would be “typical,” she would be a completely different person.
If you asked me that today, I would say, “It’s complicated.” Would I take away the health problems? Absolutely, but I don’t know about the extra chromosome. Maybe it’s different kinds of acceptance or maybe it’s the real, beautiful, life-changing things that happened over the last year. Maybe it’s the people I’ve met or the opportunities for advocacy or finding out that there are important things about our world I need to know. Or maybe it’s that I love this little girl more than the one that sometimes enters my brain – the typical baby who never existed.
But I think the real answer is that Mia doesn’t really need to change. She is who she is. She was born with an extra chromosome and a lot of spunk. She isn’t the problem. It’s the world that’s the problem. It’s the prejudice against people with disabilities. It’s the belief that she’s broken and unworthy. It’s the way we view people who are different that’s the problem.
Why should Mia have to change? So her life is easier? So my life is easier? When were we all promised easy lives? And since when does typical equal easy?
Would it be nice if my children had easy lives? Sure, I guess, but I know easy is a fantasy. No one ever promised easy.
The extra chromosome may have been a fluke in DNA, a 4% chance, but the more I get to know her and watch her grow into the person she will become, the more I realize Mia is no accident. What was once a fluke in DNA has helped to build a beautiful person who inspires me daily to be better, do better, be stronger. Will her life be easy? No. Will it be meaningful? It already is and she’s only 2 years old.
If that is what this rabbit hole looks like, then I’ll take the red pill.