Everything was difficult for me as a disabled mom, and I say it that way now looking back as I marvel at how I survived raising kids in a nondisabled world before access to technology afforded us some of the small luxuries we enjoy now, and before disabled moms were as visible as they seem to be these days.
Back when my boys were little and believed in Santa, I often felt very alone and very invisible as a disabled mom. My boys did not have other disabled moms to see me reflected in. They did not have disabled role models to “normalize” their view of family as family is usually defined by ableist society. Instead, they had two parents in wheelchairs who went out of their way to pretend they were not disabled so the boys could grow up feeling “normal.” But trying to be “normal” is nothing more than measuring success with a nondisabled ruler, which is bound to make us feel like a failure. And I did feel like a failure.
I felt like a failure when I sat on the floor with a naked Christmas tree that I could not decorate alone for two eager little boys who wanted it “now.” I felt like a failure when things had to be done on the clock of nondisabled people to whom my needs seemed to be an inconvenience. I felt like a failure when I had to take the boys Christmas shopping with me and pretend not to buy anything so I could surprise them. I felt like a failure for feeling exhausted, for feeling envious of the nondisabled parents who did not need help shopping because they could drive themselves anywhere without having to plan and depend on help from people who see them as a burden. I felt like a failure as a parent.
Yes, Christmas has always been especially difficult for me. Looking back, I wish I knew back then what I know now. Looking back, I wish I had worried less about putting together a perfect tree and taken the time instead to enjoy letting the boys decorate it in their imperfect, beautiful, child ways. Looking back, I wish I would have known how important my being present was instead of getting a present for my sons. But back then I didn’t know what most young parents don’t know because life has a way of teaching us the lessons we need to learn when we are ready for them.
A lot has changed in twenty years. Christmas is still emotionally challenging for me, but now that the boys are men, I no longer try to play the perfect parent. I no longer struggle to decorate a tree, cook a big meal, or shop behind their backs. Getting older, I guess, does make us wiser. I have become more relaxed about the holidays, more able to enjoy other people’s joy rather than desperately trying to be part of it by meeting ableist socially-imposed demands. I have stopped tolerating ableist people in my life in the name of family or holiday spirit.
Christmas for me has evolved to online shopping for a grandbaby I adore and letting her parents deal with the rest. It’s their turn to struggle with the tree. Life is fair.
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