My Two Year Old With Down Syndrome – or “Vials of Moxie”

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I am two years into this, having a child with an extra chromosome. It’s interesting to compare what I once thought would be true (– that I’d have a child born with a bowl cut who would never really communicate and would likely lack sparkle) with what is my truth (– that I have a child with awesome, fast-growing hair, that communicates a storm even though she doesn’t really talk, and is about as disco-sparkly as any child could possible be – and then some).

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Moxie and  her brother. They are so different. And so compatible.

Are they compatible because they are different? Yin to the yang?  Because they have known each other for so long? Because they kind of have to be compatible – if they want to have fun, that is – based on their being thrown together so much?

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He reads to her, she loves it.

She pounces on him when the book is over, rolls in cub-bear-hugs and growls of delight.

She’s fierce; he’s more cautious. She encourages him to take a few more risks; he helps teach her to watch out a bit more.

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We go to the park, the both of them run off their separate ways – he, usually to see who he can round up to form a crew for his spaceship; she, to physically cover the terrain and see what’s what.

And investigate the slides – never forget that. She wants the highest, scariest, bounciest of them all. Screw those baby slides; she always heads straight for the bigger kid’s ones.

She slides again and again, bouncing right off the slide sometimes at the bottom, hitting the ground with her butt. She laughs with gleeful abandon; other parents look at me like I’m a bad mommy.

– How can I let my little girl up there? How come I don’t catch her at the bottom?

I let her go because she loves it; I don’t catch her because she laughs so hard when she lands on her butt.

What do they know? They don’t have a child with so much moxie.

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Micah always finds her at some point. He seeks her out, usually followed by a new friend or three.

In the photo above, he was pretending he was beeping open the door to his “quarters” for sleep. You know, like the doors beep in Star Trek. Moxie watched.

He lay down. His new friend did the same. Moxie went over to a similar button and was pressing it, “bee!” “bee!”

Moxie finished beeping herself in and gave Micah a quick kiss

And then watched a minute while Micah and his new friend feigned sleep. She looked like she was getting bored. She took off.

That’s what she does and maybe that’s something I never expected – for her to know her own mind so well. Know clearly, exactly what she likes, what she would like to be engaged in – in any given moment. This girl is not wishy-washy.

She wanted those birds.

Strode with determination right after them, purpose in each step.

The birds weren’t terribly alarmed – she’s smaller than most of them, after all – they just kind of sauntered away. Slow enough to give her hope, fast enough to keep out of reach.

It made me laugh.

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While I was chasing Moxie (chasing the birds), I was thinking about the fact that the girl that Micah was playing with was 5 days younger than Moxie. She was talking, repeating everything he was saying. She understood most of what he was saying. She was following right along with his pretend-play. She was about a head taller than Moxie.

All of these things should probably have depressed me, and in no way did they. It’s simply not possible for me to compare Moxie with typically developing kids. No, she’s not talking or repeating words like the girl Micah was playing with was. But the girl that Micah was playing with did not have the same sense of independence as Moxie; she was following, she wasn’t leading. Neither is better – but they are definitely different and not comparable.

I got to thinking that in some ways it’s easier to just accept and appreciate our kids with special needs as being these interesting, unique people and not compare them to others. It made me feel a little sad for typically developing children that are compared so much more. Have these “standards” and things they have to live up to.

I wish I could distill this sense of gratitude that I have for finally understanding this truth: all children are gems of unique capacity. All children have special needs. All children excel in something, none are an exception to this rule.

I’d give out my distilled gratitude, the peaceful understanding and appreciation in lovely little vials called, “moxie” – go grab yourself some.

 

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