I’ll admit
that, as a family, we don’t go on a lot of outings. Of course, we grocery shop
and make tons of trips to Target (what? It’s a necessity), but between flu
season with an immuno-compromised child, our work schedules,
and just everyday chaos, planned outings tend to be put on the back burner. At
least the ones that are large events with lots of strangers. This weekend, we
were at a graduation (congratulations, baby sister!) and for the very first
time, I noticed it: the glares, the whispers, and eyes full of pity. In a crowd
full of strangers, I felt that all eyes wandered over to our smiling baby boy
who was oblivious to their stares.
For over a
year now, Flynn has been wearing orthotics on his legs. He started off with an
SMO, short for supra malleolar orthotic,
which means they extend just above the ankle bones. He now wears AFOs. An ankle-foot orthosis, or AFO, is intended
to control the position and motion of the ankle and/or compensate for weakness.
AFOs can be used to support weak limbs, or to position a limb with contracted
muscles into a more normal position. This type of brace ends just below the
knee and provides more stability than the SMO. After months of little to no
progress, we made the switch (under the care of Flynn’s physiatrist) to the AFO
and have noticed a change in even just the past couple of months.
I know
that people notice them when we’re out and about. I mean, he chose a Spider-Man
design and wears his Spider-Man light-up sneakers. They’re obvious for sure.
Some people have approached me with questions because their child may need
them, too, and I’m more than happy to help however I can.
RELATED: Maintaining a sensory diet during the summer
This
outing was different, though. The stares were blatant and were followed by
whispers behind hands. Some people pointed, others just looked without
blinking. And their eyes? They were looking right at us.
I thought
about saying something. I thought about staring back. I thought about yelling
and jumping to his defense. But what was I going to defend? He was doing
nothing wrong. There’s nothing wrong with
him. We’ve made it a point as his parents to show Flynn that while his AFOs are
a part of him, they do not define
him and never will. They are something that he needs, but not what he is. Orthotics aren’t a thing to defend, it’s not a debate. So, I
glanced down at my sweet son playing in the grass and smiled. I complimented
him on his ability to get back up when he falls. I kissed the boo-boos on his
knees. I told him I loved him and let him keep playing.
RELATED: Mom-approved pediatric specialists
I could
have easily gotten angry, but people are just deterred by what they don’t know.
Inclusion is not feeling any
different. It’s being a part of a group without being singled out. It’s being
able to exist at an event without having to be defended – like it wasn’t your right
to be there, too. So, I acted like no one was staring, whispering, and pointing
and we played in the grass together.
People don’t
know what they don’t know. Curiosity isn’t a bad thing, but maybe it’s an
opportunity to become informed. Ask the questions. Become more knowledgeable.
Practice inclusivity. Be compassionate.
________________________________________________________________
Underestimated Strength is a collection of posts all about our journey through life as we navigate preemie parenting after the NICU. You can read my posts here every Tuesday! Also, feel free to follow me on Instagram, where I speak freely about our story and advocacy.
Do you have any questions, comments or topic suggestions? Contact me via email: kristina.mulligan.blogs@gmail.com!
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