Leggings will work, and tops. Dresses . . . no. Too fussy. Joggers are cute, but bulky. When the physical therapist puts my preschooler in her weight-bearing stander, excess material will be cumbersome, uncomfortable, and might obscure proper alignment, I think to myself.
I’ve already scrolled through lackluster pages of adaptive shoes, the ones that zip from the big toe past the pinky and on up to the ankle. The leopard or rose gold metallic options would normally send my heart aflutter—so stylish!
But not today.
I add a few items to my cart in an attempt to distract myself with the usually fun task of school clothes shopping.
It’s no use. The screen blurs; my eyes burn with tears.
Last year, I’m pretty sure my head exploded when my daughter’s early intervention case coordinator mentioned preschool at a review meeting when Hilde was just two.
“In about six months we will start the transition process to preschool,” she had said.
Preschool??? I’m sending my sweet baby to preschool?
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Three is one of the pivotal ages in the world of disability—it’s when my daughter will age out of early intervention and begin receiving a “free and appropriate” education through our school district. Finding the right-fit school is a trust-your-gut kind of process, so when my husband, Hilde, and I explored one particularly cheerful facility my eyebrows raised optimistically. As we met the teachers, classroom aides, nurses, therapists, then glimpsed the sensory room and therapy suites equipped with eye-gaze technology and adaptive resources galore, I knew this school was the place for our girl. I was excited!
So, why the tears?
This transition hinges on my trust of the professionals who will care for her. I’ll have to let go quite a bit and that’s scary. Hilde will go from being home on our watch all the time to spending a significant chunk of her day out in the world—on her own.
But let’s face it, I’ve been required to do that with this child since the moment she was born and placed, not into my arms, but the arms of a team of specialists. I’ve released Hilde many times over into the care of others—in the delivery room, at operating room doors, in neonatal intensive care units. This little person has been on her own without me many times before. While it doesn’t get easier, it also doesn’t feel like the root of my difficulty bubbling up about preschool.
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Hilde’s transition to school coincides with her birthday, an anniversary I’m finding year after year is quite tricky for me. It brings up a lot of trauma—the uncertainty of those days, not knowing if our daughter would survive and if she did, what complications we might be facing. We had nothing at all but unknowns.
Two weeks after birth our daughter was diagnosed with Pallister-Killian mosaic syndrome. It’s caused by a rare chromosomal anomaly and it contributes to her disabilities and a host of other medical complexities. With Hilde’s rare condition, one of the unknowns is life expectancy.
As a parent, this awareness haunts the background like an ominous shadow.
I’m aware there are layers and layers to my emotions about this transition, but I suspect there’s a dominant one. When I felt the strong undertow of grief despite also feeling elated at our school choice for Hilde, I knew I needed to talk it through with a trusted professional. I regularly see a therapist because taking care of my mental health is vital. When I met with her, I tried my best to explain, through tears, this tangle of feelings: I’m excited beyond belief because . . . PRESCHOOL! I’m filled with wonder. But there’s shock and disbelief too.
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Raising a child with significant disabilities and medical needs demands that I focus on the here and now. It’s an important coping skill for me, lest I spiral into the abyss of what-ifs. I think that’s why preschool is hitting me so hard—it wasn’t promised. In fact, I never once thought of Hilde going to preschool before that conversation with the case coordinator. It didn’t occur to me to dream this because I seldom think that far ahead. It’s weighty, the grief that even causal milestones aren’t in my sights.
When I sit down with my therapist, I tell her that these emotions about preschool feel akin to those I experience when I encounter older children or young adults living with similar conditions to Hilde—my heart swells so large it feels like it could burst right out of my chest.
“Partly,” I whispered, “the grief is . . . Can we hope for this? Do we dare?”
Hope. It’s so tenuous. It’s pure and complicated. It feels dangerous. It rips me wide open.
My therapist smiled at me fiercely that day.
“Yes,” she said. “Some days, we DARE.”
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To dream like this feels like holding a fistful of sand—the slightest move might send it running through my fingers. But as much as I cope by focusing on “right now,” some days it’s important I hope—daringly, wildly.
Those leopard high tops are darn cute . . .
I’m ordering them. And maybe a backpack too.