Medical Motherhood

“If they pay me, I could stay with my child, I could provide the things she needs, get off social services and food stamps and feel like I don’t have to rely on the state. I could be self-sufficient. Under this new program, I felt like I could get there, and now I don’t.” — Carly Anastasion This is the fourth installment of our occasional series profiling mothers raising disabled children. The nar...

“If we were allowed to be her caregivers, our quality of life (and most importantly HER QUALITY of life) would drastically increase. ” — anonymous survey respondent I’ll say one thing about COVID-19 — the threat of illness or death changed a lot of people’s seemingly unalterable beliefs overnight. Companies that had refused to give flexible work options suddenly found ways for their employees to w...

Psst. Are you a paid subscriber yet ? Medical Motherhood’s one-year anniversary garden party is coming up. The event-of-the-season (OK, yes, I’ve been watching Bridgerton) is for paid subscribers only! This is the third installment of Medical Motherhood’s occasional series called In Her Words. For these long-form narratives, I interview mothers of children with disabilities to get a deep sense of...

“Grief is not limited to sorrow. …Grief is truly that natural and normal reaction to loss that can have conflicting emotions.” — Katie Greer We dive into hard topics here and this week is no different. Fortunately, my friend Katie Greer, a grief recovery specialist with The Satellight Project , has the knowledge and the attitude to make sense of death and other loss. Katie and I met through my son...

“I like it. Good job.” — Oscar Triplett, 9, about the March 24 rally As I drove back from the Family Caregivers Car Caravan at the Capitol in Salem last Thursday, I was struck by the depth of feeling from so many of the people I spoke with there. The love between parents and young children is a world-changing force. Watch a video of the arrival of the caravan at the Human Services building: https:...

“When Oregon finally allowed parents to be paid as caregivers it was too late for us.” — Celia Vander Velden I’ve spent most of the last year in this newsletter defining a problem: raising disabled children is difficult in ways few on the outside understand — and accessing supports from our government is usually a big part of the problem. In compiling the news briefs at the end of each issue, I’ve...

“What we’re looking at is a complete rollback to the idea that children are entitled to a free and appropriate public education.” — Sen. Sara Gelser Blouin (D-Corvallis) COVID-19 changed so many policies, but I would argue schoolchildren have experienced some of the biggest policy impacts. Children in special education even more so. A few weeks ago, I wrote an allegory for how it felt trying to re...

“ As the rest of the U.S. comes to terms with the same restless impermanence, it must abandon the question When do we go back to normal? That outlook ignores the immense disparities in what different Americans experience as normal. It wastes the rare opportunity to reimagine what a fairer and less vulnerable society might look like.” — Ed Young, staff writer for The Atlantic As the nation seems po...

“It’s been a very frustrating process to uproot everything,” — Jessica Franklin, mom of two Three years ago, I embarked on research for a book about what it was like to interact with the morass of government services as the parent of a child with complex disabilities. The book was a victim to pandemic forces, but through my research I came to the conclusion that the our support systems are entirel...

This week, I bring you an essay I wrote two years ago, in October 2019, before the world changed — though many of the conclusions I have are the same. True service to needy people would look a lot different than the systems we have now. I’m not gonna lie: My life is super awesome.  I think it’s important to say as part of a newsletter that involves a fair amount of complaining — both for the sake...

“I don’t think one parent can raise a child. I don’t think two parents can raise a child. You really need a whole village.” — Toni Morrison Here’s something I never would have noticed if I weren’t the parent of a child in a wheelchair: The places where parking for disabled people is always full and the places where it never is. The hardest places I’ve found to use my son’s disabled parking permit?...

“There’s such pain and agony in parenting these kids with personal challenges. I had to make the struggle count for something. It had to matter.” — County Commissioner Sonya Fischer I have wanted to do this story for a long time — ever since I met these three strong female politicians here in Oregon. State Senator Sara Gelser Blouin, County Commissioner Sonya Fischer and former Representative Juli...

“The potential possibilities of any child are the most intriguing and stimulating in all creation.” — Ray Lyman Wilbur According to the latest statistics available, there are about 850,000 public school special education teachers and paraeducators in America. They serve 6.3 million children, or about 9.5 percent of Americans between the ages of 6 and 21. Special education in America got its start...

“You've got to know when to hold 'em, Know when to fold 'em, Know when to walk away, And know when to run.” — Kenny Rogers I have these two extremely valuable items. They are my most treasured and prized creations, actually. I work on them every day. I’ve spent hours and hours and hours molding and shaping them. They are beautiful, glorious, amazing things. If necessary, would give up every other...

“As many of us struggle with mismatched input/output capabilities, we feel out of control. We live in a world of paradoxes, a world that seems to toss us about by inexplicable forces. Our need for control doesn’t come from a desire to be one up on others. It is often a desperate attempt to manage a situation so we can function with a degree of competence. Otherwise, it’s so easy to look and feel s...

“The night is the hardest time to be alive and 4 a.m. knows all my secrets.” — author Poppy Z. Brite This week, I was listening to a researcher on NPR talk about how they found that nurses who worked the standard 12-hour shifts were more likely to burn out, more likely to make medical mistakes and more likely to have dissatisfied patients. Grumpily, I wondered how that 12-hour shift might go on 4...

“Every building, moving forward, that’s built should feature accessibility for all.” — Courtney Lackey Readers, I have something truly special for you this week. When I started Medical Motherhood, I knew that there were so many fascinating, heart-wrenching, heart-warming stories about raising disabled children that simply weren’t being told. I needed a niche publication to tell those stories, but...

“When faced with adversity, gratitude helps us see the big picture and not feel overwhelmed by the setbacks we’re facing in the moment.” — Robert Emmons In my life, Thanksgiving is a holiday of food and gratitude. This is a time of year that I count my blessings, reminding myself that even when all is dark, a light still shines. Gratitude is hard. Gratitude does not excuse injustice. Gratitude is...

“It has taken a pandemic to lift the veil on that which has been hidden in plain sight for decades. The problems will not be solved with more of the same. Meaningful systemic reform will require a radical transformation of business as usual, a commitment to financing, and robust standards of accountability.” — Carol Dickey I am a terrible parent. That’s what everyone says, right? So it must be tru...

Hey folks, I’m trying out Substack’s audio feature this week. (It’s a trial feature here on Medical Motherhood — I only had time for one take so it’s far from perfect!) Please let me know if you find it useful. “If serious people never wrote deeply about the household, about work and gender and money and race, we couldn’t expect things to improve. If the centrality of these domestic chores was con...