Getting Things Done, My Way

For one mother living with Charcot-Marie-Tooth disease, daily perseverance starts with redefining 'normal'

by Susan Manning on January 5, 2015 - 9:11am

Quest Winter 2015

I measure and compare myself to other “normal” mothers out there — those who are able-bodied. It’s hard not to, especially when it comes to doing everyday things with my son.

Author Susan Manning

I have an amazing little guy. He’s always ahead of the curve with milestones and learns new things in lightning time. The one thing he’s not so fast with picking up is walking.

He crawls like he’s on fire, cruises where possible and races his Fisher-Price walker activity push toy around, beaming with pride and joy. He climbs on stools, chairs and couches with ease. He stands up on his own and doesn’t need to hold on while he’s standing there. He even teases us, looking like he’s ready to move one foot in front of the other after he is done standing still. But, alas, he has yet to actually do the walking. 

To be fair, it’s a selfish reason I’m hoping he walks soon: he’s nearly 30 pounds, which is heavy for most parents to carry around, but for me, with my Charcot-Marie-Tooth (CMT) and limited upper body strength, it’s crucial he start walking soon.

He’s great at climbing the stairs, which is a tough carry for me, so that’s one good thing. But even carrying him the short distance from the car to the doctor’s office has me nervous I’ll drop him. It seems silly, though, to put him in the stroller or K’tan (baby wrap or sling for carrying) for such a short distance.

The able-bodied mothers make it look so easy. I see them slide their kids onto their jutting hips that seem made to hold them, with one smooth move. The kids sit there, with only one of mom’s hands under their bottoms, and most often that hand also carries a bottle or cup of coffee.

I, on the other hand, have to make sure his armpits are positioned just right on my hands so my wrists don’t flop back from muscle fatigue. When he’s in place, I lift him carefully to my torso and then, in a few short jostles, he’s positioned onto my left hip — but for some reason I can’t do the right one. Before I’ve even closed the car door, I’m readjusting because my fingers and arms can’t work simultaneously, which means I can’t lock the door from the key fob while I am holding him.

Instead, I heave him to my front, use two hands to lock the door, and re-jostle him into position on my hip. Thank God for the new car — a GMC Acadia — and its automatic liftgate, which opens and closes with one click on the key fob. But again, he needs readjusting so I can have both hands to push that one button.

Once he’s finally on me and the car is set, forget being able to carry a cup or anything else, especially in my left hand. My pocketbook is a right shoulder thing, but because part of being able to keep him hoisted on my left hip means leaning to the right, the purse straps won’t stay secured on my right shoulder. As a result, I hope I’ve remembered to zip it closed because it ends up flapping in the wind as I maneuver my way to the office.

Fast forward 10 minutes to the check-in desk — yes, it takes me a while to walk so I make sure my foot lifts off the ground each time and I don’t fall — and my newly washed-and-dried hair is a frizzy mess, I have sweat droplets dotting my forehead and dripping down my back, and I immediately hope the counter is big enough to rest him for a minute. Somewhere in there I pray the doctor is in a room close to the entrance instead of the back rooms.

Once I look as though I’ve just competed in a Tough Mudder (mud run), a nurse calls his name and it’s time to pick him up again and carry him to the room.

The order to “strip him to the diaper and bring him out to the scale” seems benign enough; to most, it is. To me, I sweat more, trying to remember if I’ve dressed him in the outfit with as few zippers, buttons and snaps as possible. It’s pretty embarrassing when the nurse returns to the room to check why it’s taking so long. I always fumble, making something up; he was squirmy or fussy, I say.

I don’t always want to have to explain I — the one who is walking and looks able-bodied — have CMT and can’t work my fingers too well or too fast, have trouble carrying my own son, and no, I don’t need your pity or sad looks. Just give me a few more minutes, and I can do whatever you do.

So usually, I just lie.

Until I can’t, like when the doctor tells me to hop on the table with my son in my lap. Err, um, well .. .and the explanation begins. Soon, we’re propped on the chair instead and it’s fine, minus the embarrassment.

The lies usually continue after the appointment, too.

“Can I give him a quick bottle before we go?” I ask, always. This buys me time to dress him without feeling rushed. And to wipe the sweat from my forehead that accumulates during the dressing process.

In the end, it always turns out fine, thanks to the voices in my head that remind me I AM strong, I AM a good mother, and I WILL be just as good as other mothers even though I get things done differently than they do. I may end up driving home with “Jell-O” arms, but I look in the backseat and see my little guy safe in his car seat and happy as a clam, and I know we will be OK. Despite my challenges, I wouldn’t change it for the world. In fact, I’m hoping we’ll add another to the mix soon.

And my son will be fine, if not stronger, growing up with one differently abled mother and one able-bodied mother. His everyday may be abnormal to some, but to him, it’s right on par. In fact, I know that once we get home, it’ll be back to the same ol’ routine: I’ll work with him to encourage his walking, and then he’ll see it as a game and will promptly slither out of my grasp, onto the ground, where he can once again speed through the house on all fours. 

Susan Manning is freelance writer with CMT who lives with her family in Massachusetts.

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