The bus.

“A bend in the road is not the end of the road…Unless you fail to make the turn.”
― Helen Keller

I cannot even tell you how many times I’ve heard this platitude. I’ve said it. I think we’ve all said it or thought it. “I don’t care if it’s a boy or a girl, as long as it’s healthy.” After Mia was born, the platitude took on an entirely different meaning for me.

The other day, I heard these words spoken again. Not by anyone I know, but by a stranger. Out of nowhere I felt it – the disability bus. It happens from time to time. Ninety-nine percent of the time, everything is fine, then out of nowhere, that damn bus runs me over. It sucks all the hope away, and then I just feel the weight of it – disability.

I think those particular words hurt so much because it sets health above all else as the pinnacle of happiness, and that’s a pinnacle that my daughter will never achieve. Mia is healthy, but health is relative. She’s healthy with a hole in her heart, hypothyroidism (that will only get worse as she ages), low muscle tone, pronated ankles, poor eyesight, and a third 21st chromosome that will constantly affect her in every way. I realize all of these things aren’t horrible and she’s doing great, but she’s never going to achieve perfect health.

Of course health is important. I’m always working to achieve better health. It’s the constant mantra in our culture from buying organic food to the ideal exercise to the constant barrage of “what will kill you” in the media. We can’t escape it.

But after Mia was born, “just as long as it’s healthy” felt like such a weird sentiment to me. What does that even mean? Just as long as it’s healthy, what? You’ll be happy? You won’t worry? Your baby will be fine? A giant crevice won’t open in the earth and swallow you whole? What are you going to do if the baby is unhealthy? Are you going to give it back?

I realize the sentiment is really that we are hoping and praying for a healthy child, and there is nothing wrong with that, of course. No one wants their baby to suffer in any way. Everyone wants the perfect birth experience with no NICU stays and the perfectly healthy baby. And there is not a thing wrong with that. I even hoped and prayed for Mia’s health even if she had an extra chromosome.

And usually those words don’t bother me because I understand the sentiment. I hear it and move on. But it’s just that damn bus. The one that reminds me that she has to work harder than everyone else. It’s the reminder that she will be constantly judged by her diagnosis, and that our society has already determined what she is capable of. It just sucks. I hate that bus.

But thankfully that bus doesn’t stick around long. The weight is less and less lately. It shows up, knocks me down for hours, not days, because I realize that while disability is a part of our life, it doesn’t define our life. I get to decide how long it affects me.

I can either let the bus run me over or step out of the damn way.

And who has time for a pity party when you have these two awesome people to look after?


Fynn 10

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