I’ve heard this one a lot: “But…that’s normal for a child with Down syndrome, right?”
Each time, I say, “Yes, it’s pretty normal for a child with Down syndrome to (Insert: have a heart problem/ need a lot of therapy/ need surgeries /get sick a lot).” When I want to say, “It’s not normal for us. This isn’t normal for me. It’s still really hard.”
I have conditioned myself to speak of these things as they are normal. They aren’t normal. Expected, maybe. And that helps me to be prepared. But having my child in the hospital, or going through endless amounts of therapies, or preparing for her to have surgery isn’t any easier for me to go through than if a parent of a “typical” kid goes through it just because Abby has Down syndrome. It all carries the same weight.
Sure, time and experience have worked to strengthen the muscles of my resilience. I’m a little stronger and I feel like I can endure just a little bit more than I could. I watch as people who have children with needs that far surpass Abby’s carry a weight I do not think I would be strong enough to bare. In talking to them it is the same as it is with me: you do it because you have to, you learn as you go. You get stronger. You carry on.
But the weight is still there. At the end of the day it still feels heavy on my shoulders, and wears through to my soul. We all have our ways of coping with the weight. We have religion, we have friends, we have support groups. These things all work to help lighten the load for a time, but no one, no matter how faithful or popular, can go without shouldering the weight on their own, and though we may have conditioned ourselves well, it’s still pretty heavy.