“No matter how hard you try, you simply cannot fit into your old life anymore.” — Glennon Doyle
Medical Motherhood is a newsletter about, well, medical motherhood — a term I’m using to describe a particular experience in this modern society.
This type of parenthood is no longer as rare as it once was. Every year, hundreds of thousands of parents join our ranks. It is a stark reality hidden in plain sight. As medical science advances, children are miraculously surviving previously unsurvivable conditions, new diagnostic practices are medicalizing children younger, and new chemicals are fed into their systems earlier. This means more mothers than ever are being drafted in the care of disabled children, soldiers in the fight for both the quality and quantity of their lives. This generation of mothers is not content to let our disabled children be segregated from society, as they have been and too often still are. And — with a nod to all the disabled activists and allies who have come before us — it still feels as though the burden of knitting together mainstream society with our families’ needs has largely been left up to us.
In my personal experience, having twins three months premature felt like falling through the looking glass. There was a whole world I had no idea existed and a steep, steep learning curve with huge consequences to my children when I didn’t catch on fast enough. Ten years in, I am still learning things I wish I had known a decade ago.
With Medical Motherhood, I want to add a ladder to that learning curve. I feel like SO MANY of the important things I know, I figured out when it was basically too late… or from other moms… and, unfortunately, usually NOT from the many people tax dollars were paying to help me.
Because we live in an ableist society, I have to pause here and say explicitly that my children are not the problem. They are whole, perfect, wonderful human beings just as they are. I am proud of them. I love them. I love being their mother. I would not trade them for anything. (Wow, I can’t believe I really have to say that, but I know I do. Yet another hard aspect of this type of parenthood.)
While I write Medical Motherhood because my children have disabilities it's not about my children’s experience. They will have to write about that, and I expect they will one day. (Until then, check out a list of disabled creators here.) This is a space where parents can talk about their unique experiences: The highs and lows of parenting children with this added layer of management and, often, the accompanying complex trauma.
As a friend of mine said: “If I’m doing it right, Stella has a ‘normal’ life, because I’ve worked my ass off to make it as normal as possible. And it’s not just being a mom. It’s a mom plus, plus, plus.”
I agree with that. In my medical motherhood, I'm doing a lot of buffering to close the gap between my children’s abilities and what the rest of the world expects a child to do and be. As I have met moms from all over the world — those who parent children with a huge range of abilities across the spectrum of neurodiversity — I have noticed that we all recognize in each other a common struggle. That struggle is borne not out of the particular needs of our children — which can vary widely — but out of the common hoops we have to jump through to get them treated the same as any other child. My hope is that by writing about it, that gap (and thus the medical motherhood experience) will get easier.
Of course, I acknowledge that there are aspects of medical motherhood that are inherently hard. Wrestling with the very real possibility that your child could die — especially when the society around you acts like children dying is something that only happened in the past, or worse, that you’d be “better off” — that’s hard. Getting kicked out of housing or uninvited to family events because of your child’s constant crying — that’s hard. The thousands of sleepless nights because feeding pump alarms are going off, or breathing treatments need performed, or children simply won’t sleep — those are hard.
But there are so many parts of medical motherhood that are hard that shouldn’t be hard. In fact, some of those hard parts were invented to lighten the load. Individual Education Plans, social service agreements, medical insurance, doctor’s forms, etc. — so many of the hoops we have to jump through are supposed to be helping our kids. So why do they feel so painful most of the time?
OK, so what will we talk about in this newsletter? I have a million ideas and about 50,000 words of a book already written. I want to explain what I’ve learned so far. If I get enough income, I want to expand that work with investigative projects of major institutions. But, unlike a book, I also hope and expect that this publication will be shaped by the feedback that you give me. I don’t want to put more useless junk in your inbox. I want this to be what YOU want to read about.
Do you have questions that no one can answer? Do you want to know how programs work? Where tax dollars go? Me too. Ask me! If I can, I will figure it out for you. For all of us.
Thank you so much to my wonderful subscribers. I can’t believe how many of you there are already! My plan with this newsletter is to go slow and only commit to what I know I will be able to provide even on the tough weeks at home. For now, that will be an email pretty much like this every Sunday. In a few months, I hope to be at a point where I can expand the offerings. Stay tuned!
We are having a choose-your-own discount launch sale right now. TOMORROW is the last chance to take advantage of the 80 percent off deal! Follow the links below:
What I’m Reading This Week
This week I’m adding a new feature with curated news, books and podcasts that I find share-worthy as a medical mom. Follow Medical Motherhood on social media (Twitter, Instagram, Facebook) if you prefer to get your news that way as I’ll be posting the links there too.
• From the New York Times: “Schools Are Open, but Many Families Remain Hesitant to Return”
Experts have coined the term “school hesitancy” to describe the remarkably durable resistance to a return to traditional learning. Some wonder whether the pandemic has simply upended people’s choices about how to live, with the location of schooling — like the location of office work — now up for grabs. But others see the phenomenon as a social and educational crisis for children that must be combated — a challenge akin to vaccine hesitancy….
….Speaking over Zoom, Ms. Kersey rubbed her temples as she recalled trying to keep her son, who has attention deficit hyperactivity disorder, engaged with online learning. There was one especially difficult period when the two were sharing a single bedroom and living with roommates. At times, the strain of acting as both a parent and a teacher caused so many fights that Ms. Kersey gave up on virtual learning.
• From the New York Times: “Policymakers Used to Ignore Child Care. Then Came the Pandemic.”
For years mainstream economists, mostly men, had argued that child care or other care work was something women did purely out of love, impossible to think about as an economic issue, she said. “It’s women’s natural inclination or moral duty to do it,” Dr. Folbre said, describing this school of thought.
…That’s changing. The Biden administration and its allies are pushing the notion that caring for children — and the sick and the elderly — is just as crucial to a functioning economy as any road, electric grid or building. It’s human infrastructure, they argue, echoing a line of thought long articulated by feminist economists (and often ignored).
• From The Philadelphia Inquirer via Disability Scoop: “Children Are Waiting Longer In The ER For Mental Health Care, Study Finds”
Nash said an emergency department can be “traumatic” for a child going through a mental health crisis because there is a lot of noise and chaos, especially in emergency rooms tailored for adults.
“It’s the opposite of therapeutic,” she said. “There is also a lack of consistency in the providers and nurses caring for you, and every hour you spend waiting there takes away from care.”
The best part of my own medical motherhood is meeting an amazing, brilliant, caring group of other mamas. If you are looking for your tribe, leave a comment and let’s build a community.