parenting · Uncategorized

All Of The Hats of a Special Needs Parent

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When I was little, my mom read to me daily.  I grew up with an appetite for reading, and a love of books.  I had a few favorite books, including the one pictured, “Caps For Sale”.  I don’t recall the book being any great work of literature, in fact, I’m pretty sure my criteria for favoring it was the man with all of the hats balanced on his head, and the monkeys in the story, which meant that my mom made monkey noises while reading it to me.  I think we counted all the hats too, which is what fond toddler memories are made of.

It’s still a favorite, but now for different a reason: I feel like the hat salesman, walking around with umpteen hats balanced on my head.

I’m pretty sure all parents feel this way to a certain extent.  We all have to play doctor, to advocate, to work with the schools, we all have several hats which we wear in turn,depending upon which role or roles we have to fill on a given day.  Our hats vary.  I’m sure the collection of hats a home school mom wears are entirely different from those of a mom working 60 hours a week, which are different from the hats of the special needs mom.

Today I come to talk about the hats of the special needs mom, because they’re the ones with which I am most familiar.  I have worn the working mom hats, the work at home mom hats, the home school mom hats, and several others, but my most enduring hat collection is that of the special needs mom.

Yesterday while changing Ben, I noticed one of his scars.  It was a tiny one, from the initial placement of his port, 7 years ago.  It is faded and one that I don’t pay much attention to all that often.  Last night I noticed it, up by his collarbone while we enjoyed a joyful, intimate moment as I changed him into his pajamas.  Just that quick peek of that tiny while lesion shattered me.  I realized in that moment that my “just plain mom” hat had been discarded somewhere along the way.

I have been wearing my trauma mama and attachment mama hat an awful lot lately, as well as my advocate hat.  My well-worn medical mama hat has seen the light of day, as well as the tubie mama.  My therapy mama hat has come out of the back of the closet after some disuse, but the hat I haven’t seen for quite some time surprised me with a visit in that moment.

I have been so busy being a doing mama for Ben, that I have long forgotten to be his mama.

That moment of vulnerability, when we giggled together and spontaneously hugged, disarmed me, and when I saw that small but significant scar, the earth shook beneath me.

In my hat juggling, I have filled so many roles, that the biggest, best, most important role slipped away unnoticed.

I suspect that I prefer it that way.  Doing is easier on the heart than being.  Doing for Ben gives me a sense of accomplishment, success, purpose.  Doing is difficult, challenging work, but being is terrifying, but in that unguarded moment, I realized that being is what I long for.  Just being.

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