Thanks for asking and for the love. It’s just so hard. All the time. Forever.”
That’s how I ended a text exchange with a friend this week, another medical mama. I was explaining another hard week in what has been a series of hard weeks lately.
Of course, I meant it as hyperbole, but that is kinda how it feels sometimes caregiving for a child with lifelong complex disabilities. So hard. All the time. Forever.
I’m 38 years old and somehow never figured out a sustainable exercise routine until this year. I don’t like to lift weights. I don’t like to play sports. I don’t like to run.
It turns out: I do enjoy walking, especially in the woods. It’s a reset button for me and a chance to decompress from being in the house all the time.
I’m still a delicate flower, though, so when I got an opportunity that particularly tough day to walk and it was raining, I almost changed my mind.
But the dark clouds matched my dark mood.
I also read somewhere that trauma can be processed by grounding yourself in your body. What better way to feel where your body starts and stops than with tiny pin pricks of rain all over?
There are other people walking in the rain.
This surprises me for some reason. I didn’t think anyone else would be out here.
There aren’t as many people as when the sun is shining, but they’re here. Other people, soaked in droplets, eyes to the ground.
Rain-walking people are different than sun-walkers. They don’t smile or wave. They do nod, sometimes.
As I walk, I think about the essay “Welcome to Holland.” A well-intentioned and popular piece by the mother of a child with Down syndrome, the essay is often given to new mothers of disabled children to let them know it will be OK. Maybe they thought motherhood was going to be a certain way — like a trip to Italy, reads the essay — but it turns out they landed in Holland and even though it’s different and unexpected, it’s still beautiful.
“Welcome to Holland” never resonated with me.
There are a lot of different types of disabilities, so maybe that’s why. There are many ways in which something that society currently considers a disability would not be that big of a deal if people were just a little more open and accepting, a little more forward-thinking, a little more inclusive with their planning.
But I reject the idea that all aspects of disability are that way. There are serious medical challenges, massively traumatic events and hard, physical labor that accompany many disabilities, even in childhood.
It’s not like taking a vacation in a different place. It’s like walking in the rain. It’s not comfortable. It’s not exciting. You get your clothes dirty.
The brights are not as bright. And the darks are darker.
But there is certainly beauty in it. You get to see a part of life that you never would have otherwise. The smells are different. The sounds are different. The gear you need is different. The people you meet are different.
I wouldn’t want to live in the rain. I also won’t try to tell houseless people that they should just shift their perspective on it.
But some days it’s nice to walk in the rain. And, though you may not have known it before, there are a lot of other people out here, too. Knowing them makes all the difference.
Medical Motherhood’s news briefs
• Check out this gorgeous choreography from the hand-off ceremony of the Paralympic Games to Paris 2024
After the baby was born and the diagnosis of congenital Zika syndrome was confirmed, several researchers approached dos Santos to see if she’d join relevant clinical studies. Eager to understand her daughter’s condition, she agreed.
Dos Santos says she was surprised to learn through a social media post last year that an international study that she participated in had been published in the journal Brain & Development.
[…]Dos Santos is not the only caregiver who felt left behind by scientists. Family groups like the one she heads have sprung up across the country, and members are increasingly at odds with the scientists who have used their children for research.
• From the Bradenton Herald: “‘These findings boggle my mind’: Audit savages Florida program to aid brain-damaged kids”
Days after the Herald and ProPublica series published, the Legislature unanimously passed a sweeping reform of the 33-year-old program. It promised $150,000 in immediate cash assistance to every NICA family, up to $10,000 in annual mental health coverage, and $100,000 for handicap-accessible home renovations for each family currently enrolled. The law also set aside $40,000 in additional death benefits for parents whose children died, ending their enrollment in NICA, retroactive to the program’s inception.
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