Pain, disability, and parenting

Pain makes it hard to pay attention to other people and their needs. That makes it hard for me to be the parent I want to be.

Being a working and disabled mom has been very tough. Everything changed so fast! I felt like I wasn’t being a good parent. I was barely seeing Moomin, and when I did see him, I was grumpy or somewhat abstracted.

Even when I was walking just fine in the past few years, it was a matter of course that Mom takes to her bed around 6pm and is a little cranky and demands massages and takes hot baths while bitching about pain.

But when I was really “on” I was all about the projects and reading and coloring and cooking and playing and paying attention.

oracle and power girl

Well, I’m not that kind of parent right now. I haven’t been that kind of mom since about January this year, not for more than maybe a couple of times a week for an hour or so. And then I just want to be in bed again, without anyone accidentally kicking my legs, and I want to disappear into concentration on something, on books or writing or my computer, because it lets me escape from pain or fear or being upset.

I have had my moments as well of crying at the thought that Moomin won’t remember me as able, really. I wonder if he remembers me before the wheelchair? Will he remember that I played with him in the park, and took him on the slide, and ran around kicking balls and carrying him and things like that? Will he remember playing “airplane” on my legs? And playing on the beach, and my teaching him how to make sandcastles?

kids on the beach, rockaway

Probably not. Or not much. Instead, he’ll remember being little enough to be in my lap and to go racing downhill at top speed in “Mom’s cool wheelchair”, and the other kids begging for rides.

He’ll remember playing “robot arms” with mom’s reacher-grabber tools.

He’ll remember the times we’ve been jousting cyber-knights with mop-handle spears, and his silly mom yelling CHAAAAARGE as she zooms across the living room with a sword in her hand.

He’ll remember feeling important, proud, and capable as he helps out by pushing his mom up the ramp when she got tired. He’ll pride himself on how he helps with the laundry, or puts away his dishes, because mom can’t do it.

He’ll remember watching Aaron Fotheringham do the first wheelchair backflip and us yelling “HOT DAMN, COOL!” at the computer screen.

On the harsher side, he’ll also remember being yelled at to pick his junk up off the floor, to clear the way for Mom on Wheels.

He’ll remember a mom who is human enough to cry in front of him sometimes.

I hope that in part will outweigh the hard times he must be feeling, or worries he has or will have about me.

I’m just glad too that his dad is so great, playing with him, doing everything, paying all the attention I wish that I could manage to pay. Baking cookies and playing with bath toys and going out to the park, going to lunch, going shopping together. Rook takes him to school and picks him up now, instead of me doing it, and goes to birthday parties and play dates. So in a way my *not* doing those things means that Rook and Moomin bond more closely, which is not a bad thing.

So he’ll remember the great times with his dad, too.

As I think of it, it’s good for *me* to remember that it’s not all about me.

If my physical situation keeps getting worse, they’ll both have to go through seeing me in some harder times. I worry that I’ll be the bummer, the drag, the bitch, always needy and not giving very much.

I feel so inadequate now, but it could get much much worse. I’m facing up to that. And will try to hold that thought not in fear but in order to appreciate what we’ve got now.

I resolve to try harder at it, and to be more involved, maybe in some planned structured way. I think a routine of Moomin showing me his homework before and after would be nice.

I’m so proud of Moomin. I wonder if I tell him that enough. And that it’s not based on any specific thing, but just how much I love him.

Halloween Party

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4 Responses to Pain, disability, and parenting

  1. Daisy says:

    Beautiful, thoughtful post. It puts my disability (progressive hearing loss) in perspective. I worry more that I'll lose communication with my blind child some day. In the big picture, though, I'm so lucky…in so many ways.

  2. Jeremy Adam Smith says:

    Hang in there, Liz. It sounds like your family has lots of strengths.

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  4. Hilton001 says:

    Always great finding something that helps people with disability to realise their potential. Here I have found a wheelchair that can do it. click here