We’re Still Here

I realize it’s been about 6 years since I’ve written anything here; I’ve had writer’s block, but we’ve also been busy. The twins are SEVEN and in FIRST grade now! My “toddler” is now TEN, so we’ll just call him “L.” They spent most of 2020 and all of 2021 doing school at home, thanks to the pandemic. Once they were all vaccinated, they were able to return to school in-person, and they are all so much happier now. A and L have made friends and are usually pretty excited to go to school together.

In February, B had bilateral femoral osteotomies and right hip bone graft — basically her tight muscle tone had pulled her hips out of their sockets and were not growing properly. The orthopedic surgeon cut the heads of the femurs and put in “scaffolding” to help the bones grow with the proper angle. The surgery worked well and changed her shape — she has hips now! Recovery was very slow, though. She spent 7 nights in the PICU trying to get her pain and muscle spasms under control. The first night post-surgery was horrific; she screamed for about 6 hours while multiple doctors, nurses, and nurse practitioners tried every pain medicine possible to calm her down. She then slept for about 36 hours, with a few moments of whining in pain every 4 -6 hours until she could get more medicine. The rest of the week, she got slightly better every day, but the nights were still so hard. It seemed like they could not figure out the right combination of medications to alleviate her pain enough for her to sleep. This lack of sleep continued for the next 6 weeks. She, and accordingly, we, did not sleep well 90% of the time during her recovery. Some nights she’d vomit at random. Toward the end of her recovery, she ended up with pressure sores on both heels from rubbing them on the foam pillow that kept her legs separated and secured for healing (she didn’t have casts, which is good, but the pillow was not as great as it sounded).

This morning, B had an awards ceremony at school; I watched on Zoom. She’s in an ESE class and loves her friends and teachers. She won an award for being a good friend, and her teacher said that she lights up the room every time she walks (rolls) into it. I am so proud of her, because I know she works hard. And she DOES light up every room. People call her “Smiley,” and everyone who knows her loves her. But I burst into tears watching these awards. Other kids received awards for learning sight words or excelling in math, and I don’t know if those are things she can do. She uses an eye gaze system to communicate, but she’s still learning it. I know that she knows some things, but does she look at the word “door” and understand what it means? Can she add 2+2? She works so hard, and everyone loves her because she’s adorable, but what about when she gets older and isn’t a cute little girl anymore? What will she be able to do? How will her life look?

It’s hard not to fall down the rabbit hole of what-ifs, but it happens sometimes. That’s kind of the life of a parent of a disabled child. We have to be strong and positive, but that façade can only be kept up for so long. When you’ve been told multiple times that your child may die in a number of ways (epilepsy, aspiration pneumonia, kidney failure, etc), you learn to put those painful thoughts in a box in your brain and try not to open it, tiptoeing around it on a daily basis. But please know that we’re always scared. We’re always wondering what might happen next, what will the future look like? I know that things could always be worse, but envisioning your child’s future when they will likely be dependent on you for life is really daunting. I’m constantly wondering how the future will look, what she will know, what surgeries she’ll need, how will we care for her as she gets bigger? Will she be able to wait until adulthood to need a kidney transplant? If she does, will her twin sister agree to donate her kidney? If she doesn’t, what will we do? What if she dies before I do? What if I die before she does? Which is worse? My wish is that she and I will die at the same time so she never has to live without me, and I never have to grieve her. If that sounds dark, it probably is. Now that I’ve dipped into darkness, I have to get back into the light to put that smile on my face when I pick her up from school and watch her smile and say “yeah yeah” as she’s wheeled down the hall toward me.

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