The receptionist on the telephone is helpful as I try desperately to align my schedule with their availability. Scheduling appointments is never easy for me. Esmé’s therapies, her ever-changing daytime caregiver schedule, and my own obligations leave these tiny little cracks where I just might be able to squeeze in something to take care of myself.

“Ok, yes, I can do Wednesday at 1pm. I’ll have care for my daughter,” I say

“Just for some background, how long have you had the pain in your hip and lower back?”

“Um, well. About four years. Since a bit after my daughter was born. But it has gotten much worse lately because she is getting bigger.”

“Oh, she wants you to carry her a lot?”

“Well, my daughter is medically fragile and doesn’t walk. I have to lift her and hold her for long periods of time.” I say.

“Your daughter is disabled? I’m sorry. I’m pregnant right now, and that is my biggest fear…that the baby would be like that,” She replies.

I’m not very quick with appropriate responses in real life to the awkward things people say to me about Ez, so I just mumbled something like, “Oh. Hmm.” And then worked to push the conversation back toward finalizing my appointment.

I didn’t speak the words that were running through my head over and over: Well, maybe you aren’t ready to be a parent, then, if that is your biggest fear. 

After I hung up I kept thinking about how very odd it is that someone like Esmé–someone so perfect and kind and funny and loving–could be anyone’s fear. I wanted to call the woman back and tell her that my daughter is just a child, who, like every other child in the world, asks only for acceptance, love, careful attention–albeit in an intense and likely life-long way. That she is a beautiful and unexpected gift. And that this is what we sign up for when we become parents…not perfection, but acceptance and love without conditions, all while steering our children toward the best version of themselves.

But this woman’s fear of disability, of difference, isn’t something she is alone in. I keep thinking about how very much our culture values intelligence, strength, and speed of attaining milestones in our children–as predictors of a sort of this idea of “potential”–potential future, potential career, potential impact. These characteristics are not inherently bad or wrong to wish for our children. But they are limited, and limiting when looked at in isolation. What about compassion, kindness, silliness, creativity, happiness? What about different forms of intelligence? Or the strength found in determination? Or the inchstone in place of the milestone?

So I made a list of some of the things Esmé is that, as her mother, I see as her biggest triumphs. She does each of these things in her our unique way.

1. Esmé is inventive. 
2. Esmé is independent.
3. Esmé is determined.
4. Esmé is brave.
5. Esmé is loving.
6. Esmé is funny.
7. Esmé is able to enjoy being teased.
8. Esmé is creative.
9. Esmé is kind.
10. Esmé is happy.

And she should be no one’s biggest fear.

9 Comments

  • I remember having all kinds of fears when I was pregnant with my first. God must have wanted to teach me a pointed lesson because we basically stumbled into a special needs adoption of a young lady with more physical challenges than I would have been able to imagine previously. Now I am pregnant again, and have no fear of what might come… Down syndrome… CP… Something rare with no name… Whatever my baby's physical abilities might be it will be exciting to add a new person to our family:-)

  • This is beautiful. Esme is so much more than her disability. I am so glad that she has you to share her story of triumph. Keep sharing your voice and her experience! You are an amazing mother and advocate. I hope that someday, everyone will be able to see the individual beyond their difference.
    —Elise (Kids Included Together)

  • Hi MamaV isn't it amazing how knowing someone with such challenges makes it all so much clearer that there is nothing so scary here. It is why it is so important that you and I share our kiddos with others, so they too can know what a blessing children like ours are–just like ALL children! How far along are you now?

  • In my first trimester… Our whole family is very excited to be adding a little one!

    And you are right about sharing our kids… I am bad at it, but you have motivated me to do better 🙂
    People say the highs are higher and the lows are lower with a special needs kid. Maybe… But being a parent to two "typical" little boys and one "special" little girl I would say that the average is about the same 😉 it's just great to be a mom 😉

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