When I Dream About Being a Mom With a Disability
Blue eyes with the faintest hint of grey, set in an almond-shaped squint, sat atop a tiny triangle nose, permanently scrunched in concentration. A narrow-lipped mouth was agape, revealing a gummy grin. His features, though fine, were a perfect fit for a seamed and dimpled face. Wisps of threadlike hair clung to his brand new and nearly bald head like corn silk to a fresh cob. Five little fingers were balled tightly into a tiny, determined fist – the others, outstretched and searching, ready to grab what captivated his attention. He looked and felt unmistakably real and in my 3-year-old imagination, he absolutely was.
My first baby doll had a Benjamin Button thing happening – he looked like a cranky old man. So I named him Randy because that’s a cranky old man name. No, actually, it was the name of one of my mom’s students and as I understood it, all little boys were named Randy. So Randy he was. Randy came with me everywhere and I took my job taking care of him very seriously. I fed him empty bottles full of imaginary milk when he cried, I gave him baths in the sink when he was dirty, and I changed all of his messy diapers – while getting an early lesson in male anatomy, owing to a venturesome toy maker who envisioned a world of anatomically-correct playthings. Thanks, Generic Toy Company Name, for a flying start to my fascination with boys’ “peanuts.”
I can’t remember a time I wasn’t obsessed with babies. My healthy infatuation with infants ran so deep that at a very young age I declared, with a fair amount of certainty, I would one day be a baby nurse and wear animal print scrubs and hang a stethoscope around my neck. This life plan stuck until I learned just how many insufferable years of math and science I would be subjected to in order to have the privilege of caring for the newest occupants of our planet. Just like that, an ambitious career choice was thwarted by an amusingly passionate disdain for anything scientific, algorithmic or algebraic – basically, anything ending in “ic” makes my skin crawl.
But, nothing about mini-humans is “ick” to me. Wee wiggly worms speaking baby-babble and sharing gas-induced smiles are masters of happiness. If I were a betting woman, I’d gladly challenge even the surliest, most disagreeable old man to a stare-down against a much smaller, spirited and possibly wrinklier recent arrival. Then I’d sit back and watch the hard shell of a curmudgeon crack and crumble, revealing the truth that no one – not even Grumpy Cat – can resist a broad beam next to a raspberry-blowing, nonsensically-blabbing gushy giggler.
Bestowed upon every baby to ever crawl or waddle the earth, the super power to melt hearts has never been lost on me. I’ve always wanted to be a momma; raising children to know unconditional love and care has been at the top of a very detailed Life List for years. But as I’ve gotten older I scare myself into thinking parenthood is just a pipe dream of a reality meant for other women. My goal of being married with kids at 28 came and went with nothing more than a pro/con list of whether or not I should adopt a cat. The answer turned out to be no, as I was afraid even to attempt keeping a fur baby alive.
Then there’s the issue of getting lazy with my daily affirmations and allowing my head to fill with anxious thoughts of general ineptitude. I wonder if challenges I face from my physical disability will make motherhood, already an exhausting job, near-impossible. I mean, let’s be real, I make it look effortless (yeah, right) but I’m a lot of work. Add into the mix a helpless human, whose fine and gross motor skills aren’t much better than my own – especially on no sleep – and whose every need depends on me, and we’ve got ourselves a real circus. And then I think other people might think that, too. The day I pee on a stick and it turns pink, will my family and friends be mostly happy, a little bit concerned or the other way around?
The questions don’t end there: When newborn skin is rosy red and not the slightly sallow pallor of worn-out plastic after too much love from a fanciful toddler, when real bottles full of real milk are emptied into real hungry bellies, when a diaper is full of stinky milk and not salty bits of dried Play-Doh (yes, this was absolutely a thing – there was no shame in my playtime game) and bath time isn’t just a make-believe activity but a real-time necessity, could I handle it? When life gets real, would I be the kind of mother I was once so good at pretending to be?
Watching everyone around me get visits from the stork sometimes feels like a mockery of my dreams and their accompanying worries, only magnified by the looking glass that is social media. Facebook is beginning to look like one giant Babybook. Not to mention the annoyingly successful clickbait ads (I’m nothing if not a sucker) for the “Top 20 European Baby Names You Need to Know So Your Baby Grows Up to Be Attractive and Successful.” How dare the internet-ad mongers take advantage of my spiking baby fever, but they get me every damn time. I’d be a filthy liar if I said I haven’t saved a few of these idea-lists to my Favorites. You know, for future reference, in case I need to know the spelling of a trendy name like Londyn or Xander.
Used properly, our fishbowl society is a fantastic tool for idea and experience sharing, integral pieces to building connections. And now that many of the most important people in my life are experiencing some of the most important moments in their lives, creating and raising some of the most beautiful humans, keeping those connections tight is essential to my relationships with my mom friends and their rugrat angel babies (depends on the hour, amiright?)
It’s even better, though, when I can be part of the pictures and stories they post. This was the summer of babies, no clearer sign of changing times. My happiest moments were spent with little fingers wrapped in mine. OK, the far less romantic Norman Rockwell-esque picture was of my fingers used as chew toys for little, teething gums or little sticky fingers all over my face. There’s truly nothing better. Shout out to my favorite nugget’s moms, making motherhood look beautiful. Watching them look chaos in the eye and give it a wink (while helping to block the view when I could), I learned a lot.
I’m a helluva lot more capable than I give myself credit for. The label of physical disability or wheelchair user assumes I am unable to do a myriad of everyday activities prohibiting me from participating fully in the human experience. While I do own the hard fact that stubborn nerves and muscles refusing to play nicely together means certain things are more difficult, and my life would be easier if my body worked the way textbooks from a medical school I never went to says it’s supposed to, I’ve spent the better part of 30 years perfecting my Winging It skills and finding clever, crafty ways to make all things work. I will approach motherhood with the same chutzpah. I will find ways to conquer every mommydom milestone. Heck, I’m halfway there. This summer I held babies while they drank bottles, played with them and made them laugh those all-consuming-body-shaking belly laughs. They kept all their limbs and fingers and toes inside the vehicle, and not once did I think I wasn’t cut out for this mom stuff.
Everybody – even Super Mom – needs help sometimes. They say it’s cliché because it’s true. And when it comes to keeping babies alive and happy, it truly takes a village. There will be plenty of people from my village standing at the ready when I need help cleaning my house or folding the laundry because I’ve used up most of my energy caring for my little human. Maybe I’ll just need an hour break to finally wash the spit-up out of my hair and change clothes. Whatever I will need, I know plenty of people will step up. Hopefully first in line will be the poor (I mean wonderful) man who agrees to all my Baby Daddy terms. I’m taking applications now.
There are lots of gizmos and gadgets to help make parenting more manageable: Just like the Little Mermaid had plenty, there is a galore of whoseits and whatsits to make sure all parents can hack it. Nowadays everything from cribs to baby bathtubs to strollers have been re-imagined to make these necessities more easily accessible and manageable for parents who have varying disabilities. Check out this great list of products from The Mobility Resource.
My favorite among them is the trend of Baby Wearing. Holding or carrying my baby with a cloth carrier will ensure their security and comfort while freeing much of my upper body to navigate my wheelchair. This mom stuff will be cake (I warned you, I enjoy sarcasm).
Babies are grabby little monsters. They especially like big machines with wheels and wires and joysticks that make said machines move. I may have to baby-proof myself, but this just means I’ve clinched my position as raddest, baddest mom with the raddest, baddest toy in the neighborhood.
There will be sleepless nights and even tougher days when I will most likely cry right along with my babies. And without a doubt, I will face a set of challenges different from my able-bodied solidarity sisters and unique to mommas who have disabilities or use mobility aids. I know I will have to be more mindful and increasingly innovative when organizing my life to make sure a baby will fit nicely into it. But I don’t care. Sure, there will be some unconventional things about the way I bring up my babies, but I vow that they will always be cared for and safe and happy.
And as much as I hope they get my eyes and my smile (30 years and zero cavities) and my sense of humor, I also hope they get my strength and fortitude, and that they will know whatever they dream of as a child, they will make reality when they grow up.