The gifts of raising disabled children
Let's talk about our favorite parts of medical motherhood
“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 not weak.
“In fact, gratitude can be very difficult because it requires that you recognize your dependence on others, and that’s not always positive,” writes gratitude researcher Robert Emmons. “You have to humble yourself, in the sense that you have to become a good receiver of others’ support and generosity. That can be very hard — most people are better givers than receivers.”
Raising any child is difficult beyond measure — and rewarding beyond measure. I would argue that in both of those realms, parenting a disabled child is even more so.
For today’s issue of Medical Motherhood, let’s talk about the best parts of raising disabled children. If you’re a paid subscriber, add your own in the comments. Not a paid subscriber yet? Become one with our 30 percent-off sale, going on now until Christmas.
It’s a certain je ne sais quoi, but most people raising disabled children have a way of skipping all the fakeness. They just don’t have time for it. Maybe it’s because their hands are too full or maybe it’s because pleasantries just don’t matter after you’ve seen your child in a hospital bed. Whatever it is, I love it. Small talk is overrated.
There’s only so much hardship a human can take. Thankfully, our brains give us a very effective stress relief mechanism: laughter. I can’t tell you how many times I’ve laughed with other medical mamas about things that no one else would understand. I think one of my favorites is when someone was describing a bad day and said they might just never get up off the kitchen floor. Another mama said: “Laying on the kitchen floor though. Closer to ice cream.” I still think about that and laugh about every other week: The bright side of desperation.
The disability community is a vast and varied spectrum. For some reason, mainstream society lumps everyone outside of their narrow bump of the bell curve together, so for a long time I thought of abilities as pretty black and white. But since becoming a medical mama, I’ve learned so much more about how many different ways there are to be beautifully, amazingly, fantastically human.
I thought I was pretty open and understanding before I had kids — and it’s not like I’m perfect today — but living this life has opened my eyes to how much privilege I had and assumed other people had, too. Now when people talk about their struggles, I usually “get it” on a level I never would have otherwise.
I have had to ask for a lot of help since the birth of my twins. Whether it’s fundraisers or places to stay or medical care or physical help, medical motherhood has been a long lesson in accepting that I can’t just do it all. Like Emmons says above, this is not easy. But watching people respond to those calls for help — some even complete strangers — has been some of the most powerful experiences in my entire life. If you have never been in desperate need, then you have never known the amazing healing power of someone meeting that need.
If you’ve ever spent time abroad, you probably know about the ex-pat phenomenon of feeling camaraderie with any fellow countrymen you happen to come across. Something about being strangers in a strange land erases any differences you might have otherwise considered important. It’s the same with medical parenthood. As soon as I learn someone has had an intensive caregiving experience, too, it’s like we shift into a different gear.
When milestones are so far off the accepted timeline, they cease to matter. As a parent, you drop out of the competitive rat-race that starts with baby’s first steps and ends at pro soccer. Or, maybe, that starts with baby’s first word and ends with scholarships to MIT. Instead, you can celebrate each “inchstone” because none of it is taken for granted.
I did not think I was ableist before I had my kids. That quickly changed when I realized just how scared I was of having a kid who might be called the “r-word.” Prejudice is so much more apparent when it’s about you or people you care about. I feel lucky to have learned the difference between thinking I’m not prejudiced and doing the hard work to root out some hidden assumptions and beliefs. It will still be a lifelong struggle but I am grateful to have been given a head start.
A life of service
Service is sacred. Don’t believe me? Take it up with the clergy of pretty much any religion.
All humans are interconnected. We all need things that have to be provided by someone else. When you raise a disabled child, this service relationship takes primacy. While it is still difficult and no one is immune to the effects of burnout, it is also beautiful. I see so many people who find their purpose and joy in medical parenthood.
What about you? What are you grateful for in this uncommon journey? Leave a comment below the news briefs, or post about it on social media. And in case it isn’t obvious by now: Thank YOU! I am grateful to have you as a reader.
Medical Motherhood’s news briefs
• From How Stuff Works: “8 Everyday Items Originally Invented for People With Disabilities”
There's something called the "Curb-Cut Effect." Research institute PolicyLink describes it as "a vibrant illustration of how laws and programs designed to benefit vulnerable groups, such as the disabled or people of color, often end up benefiting all.”
• From News Channel 5 Nashville: “Program for families of disabled kids struggling, advocates say”
"It really can save families from having to institutionalize their kids and it can save families from bankruptcy and divorce and other drastic measures they would have to take to provide for their kids with disabilities," [the Tennessee Disability Coalition’s Sarah] Sampson said.
However, she believes that bureaucracy has gotten in the way. Parents are reporting they can't get money for their child's needs, or that the services just aren't available [that] they need.
• From Bloomberg: “Texas Ban of School Mask Mandates Is Reinstated During Disability Appeal”
A federal appeals court has reinstated Texas Governor Greg Abbott’s ban on school-mask mandates while it weighs whether the edict violates the rights of students with disabilities.
… Abbott and other Republican state officials argue that wearing masks is a matter of personal responsibility best decided by individuals.
Medical Motherhood is a weekly newsletter dedicated to the experience of raising disabled children.
Replies to this email go directly to me, Shasta Kearns Moore.