Two important takeaways in boosting your child’s self image
in the face of chronic medical issues: watch TV and lie.
OK, hear me out.
I lost my dignity a long time ago. I think it was somewhere
between being naked in a room of people while I suffered 16-33 hours of pain
through two childbirths, walking around for the next 5 years with “questionable”
white stains all over my clothes (Spit up! It was spit up…), and then running
the gamut of public parenting (I see the judgmental stares…I know they are
cute, but they still deserved to get yelled at…). So, when being a “responsible”
connective tissue patient meant making even more changes to my life, I was
ready. Such as, wearing a fanny pack so I don’t put any pressure
on my traps by carrying a purse. Done. I rock
it (see skull fanny).
Or, wearing flat shoes so I can wear orthotics. Two words: ankle boots. I pull
around a wheeley-bag (leopard print),
sport circular hickeys from cupping sessions (thanks, Gwenyth, just…stop talking, OK?)
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The Big G "Consciously Uncoupling" with reality |
I have to admit, that I have been stumped by the phenomenon
that is Kinesio tape. If you’re unfamiliar with this product, it is simply a
miracle. I don’t know how it works, but here is an awesome article about it.
What I do know from my own experience, is that for the myofascial pain of
tendonitis, trigger points and other such pains that come with the EDS
territory, taping can bring near complete relief in minutes. My children love it,
and rather than feeling helpless when they hurt, I can give them a giant muscle
band-aid. Once you learn how to put it on, it’s easy to DIY, and it stays on
for days, which is great for your paycheck…not always for your wardrobe. I have
walked out of the house more than once in a Maxi dress for a night out only to realize that I had bright blue tape on my neck and shoulders. I
tried the nude one for a while, but sadly, it stinks. I have crowd
sourced my PT office, and the color that lasts the longest is blue, so set your
expectations now.
My daughter did not like wearing her tape in public that
first time. It was summer, and we were at the pool. Lots of people asked her
about it, and she decided that price was too high. One night after that, we
were out ordering dinner, and the cashier noticed the tape on my arms. “Cool,”
he said. “What sport do you play?” At first I wasn’t sure what he was talking
about. “That stuff – I’ve seen it on TV during the Olympics, right? What’s your
sport?” Without missing a beat I said, “Beach volleyball.” My kids smirked
behind me. “Oh yeah? That’s awesome. I could tell – you look like an athlete. Well,
here’s your food.” I look like an
athlete? Nice!
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Me, right before we creamed Germany in 2012 |
I’m not sure what lesson I taught them, but after
that, she wasn’t as embarrassed to be seen in her tape. Maybe the lesson was
that not everyone is looking to hear our sob story, and that she is not obligated to tell it – that it’s OK to go with the
white lie from time to time, especially when it helps us focus on the best part of ourselves. My kids are athletic. They will be able to truthfully talk
about their own sports: ballet, soccer, horseback riding, hip hop, and wherever
else their heart takes them. Even if they were taped from just waking up in
pain, they can choose to focus on their inner Olympian.
I too had been athletic when I was growing up: dancing, swimming, yoga, but not
knowing that I have EDS for so long has caused me a lot of injury. They won’t be like me, I’m doing everything I
can to make sure of it. I think life has been better for my children’s
generation that it was for mine: back then we picked on the fat kid, the
asthmatics, the four-eyes, and God help any child who had to use adaptive
equipment: social suicide. Now much of the anti-bullying rhetoric is working.
My children have sported glasses, retainers and braces on their teeth, back support pads, orthotics,
keyboards for writing, Kinesio tape, ice packs, ankle, knee, and wrist braces,
and not one kid has ever teased them for being “weird.” They will grow up in a
world where people are learning how to take better care of their body, even if
it means you look a little silly sometimes.
Your best one yet! Keep em coming Ashley!
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