I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Monday, April 17, 2017

I'd Recognize That Mustache Anywhere



Our first Great Strides Team MAMA Lou
walk 2008, the whole team!
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.

Baby Maelee with Frank Daddy before the
Great Strides walk in 2009
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. 

Me in 2009 pregnant with Charles around walk time
notice huge pregnant belly below in group shot is partially hidden
from view.
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).


This is our 2009 Team MAMA Lou Great Strides crew.
Notice my baby Chuck still in my belly. Almost done
cooking.

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.

This is Ruby last week at the baseball game.

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