Are you sure? Divulging information about your child’s disability.

People ask me a lot of pretty seemingly harmless, basic questions. All the time. Sometimes the questions go on and get personal, so much so that I call people on it with a smile and a ,”Well that sure did escalate quickly!” remark. My chipper tone and falsetto voice usually tip them off, and we part ways. Me saying an Our Father, them looking like they used a bit too much rouge.

Are they twins?
Are you sure she’s 3?
Are they Irish twins?
Is she adopted?
Is your husband… little?

There are frequent remarks, too.

She speaks so well for her age!
Look at that little one walking!

A friend recently shared THIS article about a child’s disability not being the parents’, and a part of me froze. Oh God, I thought. I have shared much of Addie’s life. Our lives, as it were. Was it too much?

The author called out much of the reason I began to share: other parents reached out asking.

I began to look back on what I’ve written, and I can see a lot of the early days is my attempt at connecting. At making sure we were doing the right things. At sharing our story… but at some point, our stories moved apart. My story was what I was doing to share about dwarfism. About my advocacy work. Addie’s life… well, Addie’s life is dance, and cooking, and singing, and school. It’s telling us what she’s doing in a song. Sometimes, it’s a surgery or doctor’s appointment. And I feel like I share why we do these things now, but not her story. This is my story about what we do.

Does that make sense?

I have written about decompression and how her recovery went. I almost needed it more for me than for the parents who asked. I needed to know this was OK. She was OK. I needed the timeline to look back on. And I do hope it is a helpful resource for other parents, but this is her story. And as I’ve said before, our story is not achondroplasia. Our story is our family. We all fit together and make a pretty normal abnormal bunch.

So… what does that have to do with people asking questions?

In the aforementioned article, the author points out that your child’s story is theirs to tell. You cannot shelter your child (a whole other post, indeed) from their disability. Why the hell would you? But you we also can’t illustrate it for other people. My child is the author.

She is three and asks me questions:
“Mommy what is achondroplasia?”
“Achondroplasia is a genetic difference, my love. There is something called an FGFR3 growth receptor and your body’s actually works too well and it essentially stunts the growth mostly here (tickles her arms) and here (tickles her legs)! It is a type of dwarfism.”
She pauses and I wait for her to process.
“Ok. Well what is dwarfism?”
“It means for you, that your body is small.”
“Oh. That’s awesome. I’m awesome!”
“Yes. 100% yes.”

While the kids at school have babied her and on the playground other kids want to pick her up, I see parents and teachers rush to her side. “What should we tell other kids?” they ask.
But before there is an adult to interfere I hear her voice, “No thanks. I’m not a baby.”
“Yes you are. You’re small like a baby.”
“No. My name is Adelaide, and I have achondroplasia. Thanks.”

 

This was all her… she’s been saying it for days. I think she’s looking for a way to tell the older kids that she isn’t a baby. #aisforadelaide #dwarfismawareness #dwarfism #achondroplasia #awesomeachon

A video posted by Chelley M. (@martinkadeluxe) on Dec 7, 2015 at 8:21am PST

It’s clear. Her voice slightly louder than one would expect in a conversation. Her eyes are locked on her audience, her stature signals her convictions. She is not a baby. And she teaches me that my temper at other’s misguided notions are not now, and probably not ever, needed.

“Are you sure she’s 3? She’s so small. My granddaughter is bigger than her and she’s 2.”
She understands it all. Every word that was just spoken, Addie gets.
“Indeed! Birthed her myself in April of 2012!”
I smile. It’s genuine. This woman doesn’t know, and she doesn’t deserve a diatribe. I’ve swiftly answered a question, the satire aching to leech from my lips, are you sure… I stop myself and look at Addie. She’s looking up at the woman who so gently smiles down. “Do you want to introduce yourself, Ad?”
She lowers her eyes, and almost inaudibly says, “Hi. I’m Addie.”

For now, this is all she chooses to divulge.
This is all I choose to, as well. She is my leader, I am nearly a follower on her path, taking notes on her disability.

In my heart I am mumbling under my breath, “REALLY LADY? REALLY. She can hear you, ya know!” But I am the parent. I am the example, and I am not upset because Addie will tell me if she wants to talk about it more. She will ask me, “Am I small?” And we will, as we have a hundred times before and will a thousand times more, talk about it openly, candidly. Sometimes I’ll throw in some science, sometimes I’ll throw in how we found out. Every time I remind her how she made me a mother, and that was the best gift I ever got. So I smile at my ladies, both of whom are eying the box of crackers I loaded into the cart. “Want to open them?” I slyly smile.

When Addie was first born and people asked
Why is her head so big?
Why isn’t she sitting up yet?
Does it run in your family?
Is her father little?
I barked back: “She has the most common form of dwarfism called achondroplasia. In more than 80% of cases it is a spontaneous genetic mutation of the FGFR3 growth receptor, meaning no, it was not previously in our family. Her father and I are both average height. Please don’t say normal. She will do things when she’s ready. She’s just little- that’s all!”

I’d walk away. I was hurt, but I was also educating in a lousy manner. I was telling Addie’s plight, which isn’t plight at all. And I wasn’t telling her story, I was reacting to questions I didn’t want to answer anymore.

So most days, I don’t.

Because I am sure that she is 3, almost 4! I am sure that I spent 36 hours in active labor to bring her into this world. And she and Millie are 2 years, 5 months, and 2 days apart. They are not twins! And I know who her father is.

So I am sure. I am sure that our path is decided every day when we wake- that we will be guided by a child (yep, autonomy for all!) because her story is her own and not mine to share. Her disability is not mine, I am merely here to be her mother, not her dictator. Should she ever choose, she will always have a platform here to share her story. Until then, I will share what I know about dwarfism, perhaps relating a note and what it means for us, but I am actively trying to not share her part in that. I hope that makes sense… and I hope to learn how to better do that this year!