Medical Motherhood

When Lenore Eklund, our fabulous Medical Motherhood editorial cartoonist, sent over this month’s edition of Where is the Manual for This?! I literally laughed out loud. I feel this HARD. My to do list is as long as my arm and somehow even when I get a surprise break I still don’t know what to do with myself. The tension between “rest” and “productivity” is particularly strong. Productivity usually...

Today’s Medical Motherhood is a rerun of coverage of a protest one year ago that was asking for parents to be paid as caregivers. Many things have changed in the last year, and much has remained the same: I still think this is a good idea and I have worked alongside a group of passionate parents for many hours every week to try to make it happen. I have also made and lost friends over differences...

Medicaid’s Home and Community Based Services are a wonderful thing in theory. But these supports — which in many states includes in-home caregivers — can be difficult to make work in practice, especially for children. Part of the issue, as illustrated this week by Lenore Eklund in her Where is the Manual for This?! editorial cartoon for this month, is the web of restrictions and limits on what exa...

I love camping. So I knew that even with our family’s extra challenges, I had to figure out some sort of way to keep going for summer adventures in the great outdoors. Through a lot of trial and error, I can say with confidence that camping with wheels is not only possible but worth the effort. Fortunately, camping — and travel generally — is being made easier by a new wave of accessibility in the...

Each year on International Women’s Day, a Portland, Ore., radio station “holds the mic up to those systematically excluded from radio, 365 days a year.” From 7 a.m. to 7 p.m., all other programming is suspended to put marginalized people’s struggles into sharper focus. As part of this Amplify Women event, XRAY FM aired a conversation I recorded with three women at 11 a.m. last Wednesday, March 8....

Toby Lunstad was an occupational therapist and manager when she realized her daughter Addilynn’s needs were significant enough that she needed to give up employment. Toby had run out of paid leave and was having to constantly correct her daughter’s hired caregivers, so she didn’t feel safe leaving Addilynn with them to go back to work. That was three years ago and Addilynn has blossomed under the...

Medicaid would have paid for Katie Beckett to live her entire life in a hospital. Her mom, Julie Beckett, had other ideas. Not only would that have been a waste of government resources, but a poor excuse for a childhood. So Julie Beckett collected arguments and data and took her advocacy all the way to President Ronald Reagan. Within two days of the President speaking about this, administrators ma...

Medical mothers wear many different hats. We are therapists and nurses and referees and dieticians and housekeepers and laundresses. One of the many hats I wear is journalist. Another, lately, has been political activist. Last Monday, Feb. 6, I wore that latter hat to a hearing of the Oregon Senate Committee on Human Services. The committee was hearing testimony two bills that could lead to paid p...

Introducing: Clarissa Kent! Editorial cartoonist Lenore Eklund and I were laughing a while back about a reverse superhero: One who dresses in street clothes to do heroic life-saving activities by day but then on rare occasions, dresses up in a leotard to do… well, absolutely nothing by herself in bed with takeout! That’s how this medical motherhood life feels sometimes. I love what Lenore has done...

This month’s edition of PDX Parent has my feature on Oregon’s radical new program to eliminate suspensions and expulsions from preschools and day cares by 2026. The Suspension and Expulsion Prevention Program in the soon-to-be-created Oregon Department of Early Learning and Care is gearing up to provide the training, research, supports and funding that early educators will need to stop the practic...

“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...

A man was sentenced last week to life in prison for sexual exploitation of four children, three of whom were significantly disabled. As a certified nursing assistant caring for them overnight in a Central California group home, Steve Rodriguez, 38, filmed himself sexually abusing the children and committed several other crimes, according to a U.S. Justice Department press release . While the detai...

Life is just too darn complex. I say this a lot, but it’s true. Especially for those of us raising disabled children, the web of rules, restrictions and justifications we have to crawl through can often be downright suffocating. Wouldn’t it be great if you could just have a robot do all that for you? Well, an all-powerful solution may still be a ways off but ChatGPT may be the next best thing. For...

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund . There just is no substitute for: “Been there. Done that.” Yes, medical professionals and social workers have their areas of expertise and can unlock access to specialized supports. But some days you just need someone who has actually gone through it themselves, rath...

“The problem with people like you is getting you to take care of yourself.” That was my physical therapist. He meant it in a good-natured way. But the statement echoed through my brain as I drove home. Though I had been to probably hundreds of physical therapy appointments in the last decade for my twins, this was the first one I had been to for myself. As my non-ambulatory son approaches 70 pound...

In September 1897, 8-year-old Virginia O’Hanlon wrote a letter to the editor of New York’s Sun newspaper. The quick response was printed as an unsigned editorial but was the work of veteran newsman Francis P. Church. Though the writing is now 125 years old, the sentiments somehow still inspire and ring true. It has been a tradition at several of the newspapers I worked at to reprint it each Christ...

In thinking about this week’s column, my brain kept returning to the image of a light in the darkness. Now is the time of year that we in the Northern Hemisphere see the sun the least. Everything is cold and still and dark. But in such darkness, even the smallest light is clearly visible. The darkest time in my life was when my children were small. I had wonderful, supportive family, but the doubl...

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund . Is it really too much to ask that all these systems set up to help disabled children do what they say they are going to do? We don’t need more toys, we need real change! What is it that you are hoping for this holiday season for the little ones in your life who expe...

This week we have an installment in our occasional series: In Her Words , which provides a window into the lives of medical mamas from all different backgrounds. In Her Words is produced through an edited and condensed interview with the mother so that we can hear her full story in her own words, rather than just soundbites. This week’s narrative comes from Lisa Tschudi, who just launched a new po...

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 researcher Robert Emmons says that gratitude is a way of seeing the big picture and not getting overwhelmed by the day-to-day struggles. For most of us, it takes conscious effort to be grateful. Gratitude is hard. And gratit...

Note: An earlier version of this post only sent to paid subscribers on accident. Apologies to free subscribers! The Sunday post is still free but if you would like to upgrade, please see the holiday sale link below. Holding Moses , a new short documentary from The New Yorker, is beautifully shot — and hard to watch. The film is a frank look at medical motherhood through the experience of Randi Rad...

The second Sunday of every month Medical Motherhood publishes Where Is the Manual for This?!, an editorial cartoon by Lenore Eklund. It’s pretty amazing how creative people can get when their medical equipment needs fixing NOW but our systems aren’t set up to move quickly. We currently have a range of fasteners, zip-ties and rubber bands holding various pieces of our son’s wheelchair together. And...

Do you smell that, dear reader? Change is in the air. And no, I don’t mean the changing of the seasons. For the first time ever, the federal government has collected together the constellation of programs it offers to family caregivers in an attempt to actually coordinate its approach to the needs of this group. The National Strategy to Support Family Caregivers , released Sept. 21, has 345 action...

My husband and I got six minutes into Netflix’s Stranger Things before we turned it off. It was 2016, our young twins were safely in bed and everyone had been telling us we needed to watch the binge-worthy show. But we got to the first jump scare of the boy riding his bike home in the dark and decided: NOPE. We had had enough real trauma involving children to last a lifetime. We’d seen true terror...

Each week, as I comb through the news to find stories to share in Medical Motherhood’s news briefs, I see a disconnect in the narratives. Invariably there are these two types of stories: The first type is about people — often perfect strangers — showing love, compassion and support for disabled children and their families. Sometimes these can veer into inspiration porn — celebrating disabled peopl...