Medical Motherhood
Medical Motherhood
There are other people walking in the rain
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There are other people walking in the rain

It's nice not to be alone in this disability journey
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A person in a dark blue rain jacket looks up in a rainy and gray forest with pines and rhododendrons.
Photo by Blake Cheek on Unsplash

“So.

That’s all.

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….

*

It’s only as I’m approaching middle age that I have found a sustainable exercise routine. 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.

Besides, I told myself. Haven’t I 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. So I go out, into the world.

*

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 parts of the umbrella of disability are that way. There are serious medical challenges, massively traumatic events and hard, physical labor that accompany many disabilities, even in childhood. This is what I hear from disabled people themselves as well as other caregivers, like me.

That is different than taking a vacation in an unexpected place. It’s not like Holland.

In fact, I realize, it’s more 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. Yes, there are really special parts of this experience. 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’m not going to sugarcoat it. I wouldn’t try to tell houseless people that they should just shift their perspective on living outside in the rain.

But some days it is 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.


A version of today’s column ran on Oct. 24, 2021. Medical Motherhood issues older than seven months are available to paid subscribers only. Upgrade your subscription:


Medical Motherhood’s news round up

Snippets of news and opinion from outlets around the world. Click the links for the full story.

• From Barron’s: “Family Caregivers Go Unpaid. Now, States Are Giving Them Grants.

[…]The number of family caregivers is rising, and all that unpaid work is taking a physical and financial toll on them, according to the 2020 Caregiving in the U.S. report, published by the AARP and National Alliance for Caregiving. The study found that 21.3% of the population provided care for an adult or a disabled child in 2020, up from 18.2% in 2015.

The average caregiver provides 24 hours of care a week, according to the report, and that workload is affecting their health and finances. The report found that 23% of caregivers say their own health has suffered as a result of their caregiving. Similarly, 45% say their caregiving hurts their finances, with 28% having stopped saving and 23% having taken on more debt, according to the report. […]

• From Richmond.com: “Parents expand class-action suit, claim state worked to deny rights of disabled students

Plaintiffs in a class-action lawsuit against the Virginia Department of Education broadened the scope of their case to allege active involvement of the state education department in denying students with disabilities access to educational services that are guaranteed to them under federal law.

The class-action suit filed in Fairfax County in September challenges the state over the implementation of the Individuals with Disabilities Education Act, asserting that in recent decades hearing officers rarely sided with parents who challenge school plans for how to educate their children. The IDEA, passed in 1975, ensures that students with disabilities receive a free and appropriate public education.

Parents, teachers and hearing officers across the state who heard about the case reached out to the plaintiffs following the initial filing to share their stories.

“It was much worse than any of us had expected,” said lead plaintiff Trevor Chaplick, a Fairfax County resident. “We were originally focused on a due-process hearing system that was defective, which was bad enough. But what we’ve been learning is that the entire system, from end to end, from start to finish, is systemically defective, and in violation of (federal disability law).” […]

• From WheelchairTravel.org: “Ranking the Best and Worst U.S. Airlines of 2022 for Wheelchair Users

[…]Delta Air Lines earned the top honors and the 2022 title of best U.S. airline for wheelchair users, with Southwest and United rounding out the top three.

JetBlue ranked as the worst carrier for disabled passengers, due in large part to its troubling pattern of mishandling wheelchairs — it did so more than 5% of the time, while the industry average is just 1.55%. The carrier’s disabled passengers also submit complaints directly to the DOT at an exceedingly high rate, more than 5 times as often as Delta and Southwest customers based on DOT data.

[…]Proper handling of personal mobility equipment continues to be the greatest opportunity for improvement, even among carriers that are performing above average. Delta’s average rate of damaged and delayed wheelchairs is low at 0.83%, but that still amounted to more than 1,600 mobility devices impacted during the 12-month period covered by this analysis. The disabled passengers who were left to pick up the pieces of their damaged, delayed or destroyed wheelchairs deserve better.


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