Mean, but true: I am my childrens’ disability.

That’s what the case worker from the state’s support services said to my husband and I as she sat on the floor playing with my two healthy and developmentally on-target two month old girls, having just finished their screening.  The sad part is that, at the time, she and I both thought she was being nice; trying to find *something* to document that might help us get some help (respite, housekeeping, anything), and, since she couldn’t find anything ‘wrong’ with my twin daughters, she started looking at me.

I can’t say that I blamed her, since it *was* my issues that made our parenting infant twins particularly difficult.  In addition to my fibromyalgia and left-over effects from an old brain infection (including cognitive and mobility issues) that I deal with every day, I was also, at the time, using a wheelchair outside the house, in some serious pain and on serious meds to deal with it, and dealing with major post-partum depression that would finally start to resolve at eight months, and not be finished with until my girls turned one year old. 

I could do everything I needed to do for my girls, tyvm, but I couldn’t do it for very long.  It is somewhat better now (esp since I haven’t just come off four months of bedrest as I had then, nor do I still weigh the 250+ lbs I did the day my girls were delivered via C-section), but I still have to budget my personal energy levels to do pretty much *anything*, including bathing kids and meal-prep.  A day out with the kids WILL be followed by a day in bed, which almost always will be followed by a day of increased pain, and that is IF I plan for it by resting in advance.  We’d done all the prep we could for twins, but, as you can imagine, no amount was enough, esp when it became clear that they weren’t going to nurse, so I’d need to pump.  (I have allergies in addition to fibromyalgia, which may or may not be an auto-immune disease, so giving them breast milk was non-negotiable in our minds.)  Thankfully I have an awesome partner.  He was just getting out of the military at the time, and took on primary parenting duties while I pumped, slept, and took pain meds. 

We blundered on, and without that help, I might add.  I rested on a futon *inside* the girls’ enormous superyard, and fed them on low-highchairs in there as well, so I could nap and know that they were safe AND had access to me as needed, and, on days when I couldn’t really manage much more, my husband stacked the fridge right outside the enclosure for us, and left a box of diapers and the phone next to me before he headed off to work. 

We managed, and that gate didn’t come down until I was pregnant with their brother, two years later, and couldn’t climb over it anymore.  In between, I’d come off the pain meds, was still pumping for the girls (until I was four months pregnant with their brother), and we even got out some.  I used my wheelchair again during that pregnancy, and the girls loved to push me.  Buddy rode in a wrap-carrier for big events until he was about a year old, since that made it easier for me to push my own chair.  (I could walk, but my energy and balance were bad, so I felt safer carrying him while using my chair.) 

Now our homeschool desk and this laptop are next to my bed, so I can recline as I parent and work.  (We tried homeschooling in the kitchen for a while, but my pain, from sitting upright, was just too distracting.  Ditto my old computer and desk, which my post-baby body just didn’t love, which the kids have inherited.)  I can see most of the playroom from here, and the kitchen is right around the corner.  My kids all continue to learn self-reliance in age-appropriate ways, since I simply don’t have the energy to coddle them, but I *always* have the energy to cuddle them, and we have turned it into an art form; we specialize in ‘cuddle-school’, all climbing into our king-sized bed for math, puzzles, stories, and ticklefests. We might not get out of the house as often as some homeschool parents (we usually go when Daddyman is available, too, or at least when he’ll be home when I’m recovering), but we take a lot of long weekends with friends and family, since that way I can rest between activities, and there are other adults around for the kids.  

My girls hold my hands to help me keep my balance on my really bad days, they are all willing to play quietly or watch a movie when I just *have* to rest, and my little guy is a pro at kissing my booboos to make me feel better.  They know that Mama sometimes just doesn’t have the energy to do things, but that it isn’t personal, and that I do the best I can.  Our house is a disaster (don’t take it personally if I don’t invite you over), but our kids are happy, healthy, and thriving, and our home is full of love *and* clutter.  Sure, I’m not known for my four course dinners (Daddyman cooks most nights when he’s home), but I bake cookies and make granola, and we do lengthy art projects as long as I’m not the only one who cleans up afterward. 

IF my kids have a disability, I’m probably still it, but it is my body that is disabled, not my ability to parent.  Yes, there is some trial and error, but I think all parents do that.  Yes, we have to plan more than other folks might, and cooperation is non-negotiable, but we do just fine.  Not perfectly, mind you, but just fine.  Can’t really ask for more than that.

* * *

Thanks to for inspiring me to write this post.  It was overdue.

This entry was posted in daily round, Disability, full disclosure and tagged , . Bookmark the permalink.

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