Parenting While Disabled. There’s a loaded topic.
I’m icing my left knee as I type this, having recently reentered the land where I can’t trust my body. Meaning that self-care is my top priority.
This land doesn’t mesh well with caring for small children.
In the United States, there’s growing awareness of the challenges of parenting with postpartum depression, prenatal depression, and other mental illnesses. And those exceptional parents who live every day with differing physical and intellectual abilities face other challenges than those of us who only do it sometimes.
Several friends have encouraged me to write about my periodic forays into parenting while disabled. So here goes.
I have a history of tissue dying due to insufficient blood supply. I got my first osteochondritis dissecans (OCD) diagnosis in my left knee when I began playing high-school-level soccer. Instead of starting and captaining the team my senior year, I spent the fall waiting for surgery on my right knee to repair OCD’s damage on that side.
By my mid-20s, I was ready for my first knee replacement, but much too young to have one. Instead, two years and three surgeries later, I had new cartilage in my left knee. My surgeon assured me that despite having OCD in both knees, there was little chance I’d have similar problems elsewhere.
Yet I wasn’t surprised when, four months pregnant with Kimmie, I learned my sudden inability to use my right hand stemmed from a rapidly-progressing case of Keinbock’s disease – another rare condition where blood supply gets cut off and tissue (this time, the lunate bone) dies.
I faced a stark choice: have emergency surgery, or lose use of my dominant hand forever. The thought of trying to breastfeed a newborn one-handed was terrifying enough that I was willing to risk surgery while pregnant.
Until Kimmie’s birth, I did hours of physical therapy daily. For the first three months of her life, my husband had to help position her each time she nursed.
When Mama can’t parent hands-on
A few months after Kimmie’s first birthday, my left knee needed a “revision” to clean up the latest OCD damage. Compared to previous surgeries, this one was minor: one-day surgery, only two months of crutches and physical therapy. But it was my first time recovering while caring for a child – in this case, a still-not-walking fifteen-month-old.
No, Mama can’t pick you up. No, Mama can’t carry you around. No, Mama can’t lift you out of your crib. Believe me, Pumpkin, I’d like to. But the doctor says I can’t right now.
My own mother came to help out for the first week-plus following surgery, after which my mother-in-law spelled her. And I carefully timed the surgery around when my husband would be on his summer break from teaching.
Relearning my limits
I set myself a goal of being well enough by summer’s end to bike a metric century, something I do at least once a year when I can. I made it despite not being able to train as much as usual.
Some people think I’m crazy for cycling so much. Especially if they know that I also have asthma. I try to bike at least 100 miles per week during the summer. Often this means I’m out biking at sunup, before the girls get up and my husband leaves for work. Surely I’m a born athlete, no?
Far from it. But I know that the only way to postpone more knee surgeries is to maintain a healthy weight and strong leg muscles.
And since cycling is one of the few sports my doctors allow, I do it as much as possible.
But not this summer. Days after announcing my guest post on Everyday Ecologist, I lost my balance while cleaning the garage. In stepping backward to regain it, my foot landed not on flat floor, but on some of the girls’ toys. Next thing I knew, I was on the garage floor, tangled up in said toys and Kimmie’s bike.
You did what?
X-rays revealed a broken kneecap. Apparently, if you have strong leg muscles and they contract suddenly and powerfully, that action can generate enough force to fracture your patella.
I couldn’t walk unless my left knee was completely straight. Couldn’t climb in or out of the shower. Could barely get in or out of a car. Sitting down involved holding on for dear life and bracing myself with my other leg.
In order to get into bed, or put my leg up to ice it, I had to reach down and lift my leg with my hands. Any attempt to use my left-leg muscles caused excruciating pain.
Meanwhile, the girls still had three weeks of swim lessons that I was supposed to shepherd them to. Not to mention the summer class I was taking, meeting my deadlines for clients, and prepping for fall Baby Consignment Sale. Plus my share of the cooking, cleaning, laundry, and other daily minutiae of co-parenting with my husband, whose administrative duties keep him in his office much of the summer.
My surgeon told me I was looking at 12-14 weeks of recovery. I left her office with a brace that covers my entire leg.
The blog posts I’d been working on for summer publication on SuperMomHacks have all fallen by the wayside. I haven’t been to the grocery store, or out to do normal errands, or anything else beyond the bare minimum, for seven weeks now. For the first four weeks, my husband did all the cooking, kiddo-bathing, bedtime-routining, and schlepping-laundry-up-and-down-stairs. I didn’t have the energy or flexibility to do any of those things.
But I’m still the daytime-parent-on-duty, and the girls still need me.
So we continue forward, one day at a time. Which is how all of us make it through our parenting journey anyway, right?
The unexpected kicker of doing this “part-time”
Parenting while disabled (or differently abled, if you prefer) on a temporary basis has unique challenges from parenting when a full-time chronic condition is your personal norm.
As one small example: Having asthma means I always carry a rescue inhaler, and I know I can’t skip my maintenance meds. I receive daily air-quality alerts, have Airnow.gov bookmarked, and monitor air quality via several smartphone apps, so I know when I can go outside without feeling like my chest is under a millstone and I’m inhaling razor blades. This helps me determine when the girls can play outdoors; Essie is already showing signs of inheriting the allergies that first triggered my asthma.
But even though I’ve been lugging around this heavy brace for a month and a half, it’s still hard to wrap my brain around the fact that every trip out of the house leaves me exhausted. To the point that I have to nap for several hours afterward.
Last night, when I couldn’t get comfortable enough to sleep, I lay awake trying to think of a fun end-of-summer celebratory outing for the girls that wouldn’t totally wipe me out. My limited energy ruled out all their usual favorites.
And that’s what’s most frustrating about my unpredictable travels to Differently-Abled Land. With my asthma, I know what to expect, and don’t give it a second thought. But when something happens to one of my joints, I never know the parameters or length of my recovery until it happens.
The only thing I do know is that I’m not done with my crutches yet; there’s a good chance I’ll be recovering from that first knee replacement before the girls are on their own.
A Parenting While Disabled How-To
Sure, the summer heat is no doubt a factor in how easily I get tired these days. Sure, having a temporary handicapped parking permit has helped some. And the girls are enjoying their extra snuggle time during my daily naps, as they watch a movie and I snooze.
But they’re not happy that I can’t play outside with them, even when the air quality is fine. Or take them to the park, or set up their wading pool, or spend a cool afternoon indoors visiting a museum. Not to mention going grocery shopping, or biking around the neighborhood with them. Or any of the other mundane activities they take for granted.
So I’m making a conscious effort to follow the advice of Erin, a.k.a. “Girl Gone Gimpy” at The Disabiilty File. Her super post on parenting while disabled is a great reminder of all the things that would seem like common sense, if you didn’t factor in the complicated expectations we all feel as parents:
- Don’t push beyond your physical limits.
- Don’t skip the braces, even though they’re hot and uncomfortable and leave funny tan lines.
- Do focus on ways to bond with your child that won’t tax your health.
- Do keep your offspring in the loop.
- Do rest when you need to.
- Don’t do ANYTHING to jeopardize your recovery.
The “new normal”
And you know what? The girls have become adept at making themselves breakfast or lunch when I just don’t have the energy. They’ve helped more with dinner prep on the nights I’ve tried to cook. And they grumble less when I ask them to set the table. Or clean up their toys, so that I can safely walk across the living room floor.
So yeah, parenting while disabled is not my first choice for how to spend a summer. But all in all, things have gone more smoothly than I’d feared. The girls have shown how amazingly resilient and adaptable human beings can be, and they’ve worked hard to help care for me, just as I usually care for them.
And if that isn’t a measure of a successful summer of parenting, then I don’t know what is.