What if

Since having Luella, I’ve learned how to do a lot of things to raise a child with special needs (nbd, I’m totally cool with the metric system now). I’ve also learned an important lesson in what NOT to do: indulge in the parallel universe.

In the parallel universe, your kid does all the things you expected her to do. You watch her take her first steps, you listen to her singing sweet songs, you film as she performs in her first ballet recital (it’s here that I crawl under a blanket and never come out).

It’s a dangerous place to live.

no place better

no place better to be

I do not–as a rule–let myself wander into that universe. At this point, it doesn’t even usually occur to me to go there. When I look at Luella I don’t see her as an alternate version of what she was “supposed” to be, any more than you probably look at anyone you know and wonder what they might be like WITH a brain injury.

That being said, I do have to take care to keep myself from getting drawn into “what could have been”. On particularly masochistic days, I’ve even stooped to browsing pictures of myself pregnant. I don’t relate to the wide-eyed person in the pictures, who cried when Mike stretched out a pair of baby socks after the baby shower, because my god, WHAT IF THE SOCKS ARE TOO BIG?!

It’s almost painful to cringe so hard at my own naiveté.

this person doesn't know how to use a syringe

this person doesn’t know how to use a syringe

I don’t want to be caught off-guard by another Great Disappointment and so I’ve tried to shield myself from expectation in pretty much every realm.

And I thought I was succeeding, until November 8, 2016, when I found myself alternately drinking out of a bottle of champagne and watching slack-jawed as Donald Trump celebrated his utterly unexpected presidential win.

I definitely don’t mean to imply that the grief experienced after having a child with special needs is even in the same realm as watching your candidate lose (even when it’s in the absolute worst of ways). My heart shattered very differently; but both times, it was left in pieces.

finding comfort post-defeat

finding comfort post-defeat

For 72 days, I’ve tried not to think of what could have been. I can hardly bear to see the “Woman’s Place is in the White House” playlist I’d envisioned dancing to with my best gals after the Big Win. As I paint my protest signs for the Womxn’s March on Seattle, I’m trying not to imagine where I would have been during inauguration had the results been different (although it’d likely be in Washington D.C., with one less middle finger tattoo than I have now).

This week, the parallel universe is sucking me into it’s orbit. It’s the inauguration, it’s the day I spent with Luella and some of her typically-developing peers at preschool, it’s the agony of watching our future Secretary of Education refuse to advocate for the rights of children with disabilities as I am literally feeding my child through a tube.

the future

somewhere out there

For so long, I imagined Luella in that parallel universe alone.  

But now I see her walking hand-in-hand with a valiant, beautiful, and fierce President Hillary Clinton, both shaking their heads in disbelief. Their presence is contradictory: one a reminder to normalize differences and practice inclusion, the other to defy the normalization of hatred and practice resistance.

I will not squander my time dwelling on what-ifs. But practicing acceptance also means accepting that some soul-crushing things will continue looming, like the damn parallel universe. And if it must, at least I can imagine that my what-could-have-beens are there together, strolling down the sidewalk, helping each other feel just little less lonely.

Luella Health Update: We are still working on communication with switches, pictures, and learning about cause and effect. Her neurologist would like us to start Luella on a ketogenic diet to see if it helps with seizures (they haven’t gotten worse, it’s just a new thing to try instead of continually increasing her dose as she gets bigger). She’s been practicing using her new crawler, which while not being used for functional purposes, is great exercise and a lot of fun for everyone!


3 thoughts on “What if

  1. It’s been a hard post election. My doctor even commented on the increase of patients experiencing depression. But beautiful Luella helps put things in perspective on what matters day in and out. I will say I thought of you watching the Sec of Ed re: IDEA. That was pretty bad. Thanks for a great post!

  2. Read many of your posts this evening. Bless you…for sharing your story and the joys and challenges with raising Luella. You’ve helped me remember to focus on what matters most…being compassionate and dealing what is before us …doing what we can to contribute to a world that works for all.

  3. Read many of your posts this evening. Bless you…for sharing your story and the joys and challenges with raising Luella. You’ve helped me remember to focus on what matters most…being compassionate and dealing what is before me in my own life.

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