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Our first Great Strides Team MAMA Lou
walk 2008, the whole team!
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Before our chapter of the Cystic Fibrosis Foundation changed
the Cystic Fibrosis Great Strides walk to Sunday we were able to participate
and did so in 2008 and 2009. It was our first experience besides visiting the
CF clinic in the hospital in regards to guaranteed being around others with
Cystic Fibrosis.
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Baby Maelee with Frank Daddy before the
Great Strides walk in 2009
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When your first diagnosed one of the bullet points in the “so
your kid has CF” speech is a pretty serious run down on why your CF kid can’t
EVER EVER EVER be around any other person with CF. It leaves you feeling sad
and kind of like other CF people are similar to the boogie man. RUN AWAY and
DON’T TURN BACK! Of course the precaution is 100% health related, but it feels
really strange to be warned not be around people who are your people.
So for the two years we were able to walk in the Great
Strides walk they let all the participants with CF know that to allow the
precaution to stay in place, avoiding others with CF, that the CF Foundation
would provide camouflage visors for people with CF to wear. This would allow
the CF human beings to avoid each other with discretion.
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Me in 2009 pregnant with Charles around walk time
notice huge pregnant belly below in group shot is partially hidden
from view.
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In 2008 and 2009 our CF child was a tiny kid so there was no
way she would keep her visor on. The first year I think I tried to somehow
attach the camo visor to her stroller but it was a fail. So I spent the whole time at
both walks darting my eyes around for other camouflage visor wearers ready at
any second to scoop up my daughter and go running far away so we wouldn’t get their
boogie man germs (I definitely know other people with CF aren’t the boogie man
so hopefully none of my CF friends who read this take offense, I’m just writing
how it felt to me in early diagnosis - not the medical science behind bacterial
colonization in the airways).
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This is our 2009 Team MAMA Lou Great Strides crew.
Notice my baby Chuck still in my belly. Almost done
cooking.
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Anyway fast forward about 9 years to last weeks baseball game
for my son Chuck, our only non CF kid. I’m watching his game with my baby Ruby
in the grass behind the dugout. I look over and see a face of a woman I
recognize as another CF mom that I know from social media only. We share similar
friends and follow each other. Anyway I pull up her account really quick to
make sure its her then I come up with my plan on how to introduce myself
without her feeling like I did at the Great Strides walk about the other camo
visor wearers.
I totally play it cool the whole first inning and then when
my son is up to bat I casually stand up and cheer for him then I’m like, “Oh hi
social media CF mom friend its me, Kamarah.” We exchange pleasantries and I sit
there for the rest of the game thinking how small of a world it is, "after all" (so they say).
Then as I take a backward glance at the sweet couple sitting
behind us in the grass behind the dugout I notice a familiar mustache. My cosmetologist
heart never forgets a mustache. I remember that I met that mustache and his
wife two years ago at our fundraising event. The couple had approached me and
we had visited about how they had two children with CF but they had passed
away. It was a special moment from two years ago that I hadn’t forgotten.
Being my father’s daughter I could NOT pass up an
opportunity to tell someone I remembered who they were, so as we were packing
up I spoke to the woman. As unweirdly as I could I asked her if she had two
children with CF. She said she did and I told her I recognized her husbands
mustache from an event two years agoI'd when we had met. She says “people always
recognize his mustache.” In my humble opinion, it’s a spectacular mustache and
I think it’s pretty cool that people know him by it. Again we exchanged pleasantries
and left for home.
I have smiled about it all week. How three CF families end
up on the same 10x10 square of grass watching a coach pitch baseball game on a
random Thursday night when statistics say there are only 30,000 CF people in
all of the USA’s 318 million is beyond me. But even though we aren’t supposed
to be together it was nice to land there anyway even if it was just for the
unspoken enjoyment of myself at the time. Cheers to chance encounters with the
boogie man.
PS – For anyone who is concerned my CF baby and the other CF
bigger girl did not get too close, although Ruby was abnormally friendly that
night. She must have sensed their sisterhood, I’d like to think so anyway.
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This is Ruby last week at the baseball game. |
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