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When my son was little and I was in a brief period between jobs, I introduced myself to someone as “just a stay-at-home mom.”
This woman corrected me in a kind, firm voice: “Don’t say just.”
“Oh, yeah,” I stammered. “I didn’t mean– You’re right, of course!”
I said just because I always expected to be doing something “more” with my life.
What exactly? I can’t even remember.
I have worked “outside the home” in some way for most of the years my son was growing up — thanks to super-flexible schedules, understanding bosses, and a tag-teaming husband.
But still today, after almost 24 years on the job, I tend to downplay my work as a mom and caregiver when someone asks what I do, even though that role has become more involved. I will usually lead with my other more interesting part-time gig, the one I keep up in addition to my 60-plus hour work week for my son.
Then I’ll add, with almost a shrug, “but I’m mostly a caregiver for my adult son who has a disability.”
I will say that it does make a difference now — financially and psychologically — that I am paid as his attendant care provider for at least some of the hours I work.
But still, I hesitate to give this caregiving work the props it deserves. I can hear that wiser woman gently scolding me.
I think this instinct comes in part from our society’s denial of the “invisible” workforce of mothers and caregivers, and, frankly, on its de-valuation of the human beings who need care — caught up as many of us are in the myths of rugged individualism, every-man-for-himself, and bootstrap-pulling that ignore our true inter-dependence.
Sometimes I decline to mention what I really “do” because I don’t want to talk with strangers about autism or the level of my son’s disability.
Sometimes I fear that people won’t understand, will see me as a helicopter parent doing too much for my son and not letting go of control.
Sometimes I don’t want to admit my caregiving role because that can bring up a feeling of loss, especially if we’re in a rough patch, of “what might have been” for him and for us.
But sometimes I simply want to have something more meaningful to say about how I spend my time.
I am his alarm clock, his calendar, his medication minder.
I file paperwork, fill out forms, and make phone calls to keep his services intact.
I’m his calorie counter, his mood tracker, his exercise partner.
I teach him how to read and rinse his dishes and comb his hair.
I’m his account manager, his driver, his personal shopper.
I speak on his behalf to doctors and government offices.
I scour the earth for respite providers.
I’m his hairdresser, his patient advocate, his recreation coordinator.
I watch his cholesterol, create visual supports, and sweep endlessly under his kitchen table.
I am busy. But it can be hard for me to be proud of my work, especially when I compare myself to others out there who are doing worthwhile, exciting, make-a-difference things.
Plus, I’m not very good at some parts of this job — particularly the co-morbid domestic duties that come along with it. I am a disinterested housekeeper, an average cook, and a reluctant shopper. I can be an impatient teacher and I hate making phone calls and asking for help and making decisions.
But I need to practice introducing myself with more enthusiasm for this job. There are creative aspects that I love — discovering adapted classic books my son and I can read together, trying out healthy recipes he might be willing to taste, locating good programs and providers our son loves, and finding new ways to connect with this kid of mine.
It can be, as I’ve said before, the role of a lifetime.
— Oh, well that’s my alarm reminding me to clock in for my “shift.” I’m off to crack open his blinds, make protein pancakes with hidden spinach, prep his medications and supplements, print his “What’s Happening Today” checklist, and see what the day brings for us.
Today, I’m just taking care of my son, that’s all.
And, that’s enough.
I am always in awe of you! I deeply feel the loss of what might have been too and I am only 5 years into this. You always encourage and inspire me that things will be ok. Thanks x