This post is by guest blogger Rebekah Farley and was originally published on her site Jaunty With a Side of Doubt in December of 2016. Rebekah is a plus size model who currently works on air modeling for QVC. She is also the mom of 2. Son “C” is 5, and daughter “M” is almost 2. “M” was diagnosed with Cystic Fibrosis at four months and Rebekah writes about her struggles with CF on her blog.
I ugly cried last week.
one was at my son’s preschool; the mommy -n- me thanksgiving day concert, craft and snack, and i forgot the oreos.
i went up to the other mothers in the parking lot, hoping one would say, “oh, honey, i forgot the cheese cubes, you’re not alone, it’s all good,” but no, instead, everyone just looked at me with eyes of sympathy.
as i dropped little c off at his classroom, his teacher greeted him and his reply was, in the lowest of tones, “i forgot the oreos.”
my heart broke. my little 5-year-old taking the stress of mommy forgetting the treat of the day. i fought back my tears for about 5 seconds and then openly lost it and did a deep gut wrenching ugly cry on a fellow mom’s shoulder.
well, at least losing it in front of moms i’ve known for 4 years at our local church nursery school isn’t as bad as if i would’ve lost it in front of complete strangers at the cf clinic’s parent information night.
oh, crap. but i did…
so, our local cystic fibrosis clinic set up a parent information night. they had a rep from great strides, the non for profit fundraising organization for CF, it was great to reconnect and start talking about the walk in may.
the respiratory therapist was there demo-ing different devices that help people with cf exercise their lungs.
the smart vest company was there with different sized vests and here, we found out that we have had the wrong size vest for baby girl!!
add a little “grr” as well, since maybe a too big of vest has been part of the struggle??
well, we were able to get some contact information and made a phone call the next day and had a smaller vest sent and oh my gosh, it’s already so much better.
focusing on the good.
but the main focus of the program was a 26-year-old professional woman, living with cf. she was there to speak to us parents of kids with cf.
she recounted her life, her late diagnosis (at age 12,) and the emotional effects which then led to physical exacerbations.
early 20’s, she rebelled, stopped her treatments and then ended up in the hospital multiple times.
that’s the thing with cf, they need to keep up with their treatments, even when they are well, or the progressiveness of this disease takes the lead.
this woman spoke proudly of her parents, as they have always been and still are her biggest supporters and her loudest advocates.
she talked of having depression and the emotional turmoil of this disease.
and this is where it cut me.
here, she has two amazing parents, fighting for her, fighting with her, cheering her on…
all things we do, here as a family, for little M.
but what if that isn’t good enough for her?
what if she needs more?
what if she still finds herself in the depths of despair, beyond hating the disease — with just plain apathy — no longer caring for herself?
this broke me in so many ways.
my husband’s shoulder was my immediate comfort as i uncontrollably sobbed, as softly as i could, before i rushed off to excuse myself.
as i wiped my tears away in the sterile hospital restroom, i took in deep breaths to calm myself.
i had to go back into that room, but so much of me wanted to leave.
leave it all.
that is not who we are.
this is pretend.
this isn’t our life.
our life is C and i paying a babysitter right now so we can eat chips and salsa with a frozen margarita. we are not at the hospital, hearing story after story of each hospital stay for the kids of these parents.
this is not us.
i can not relate to the new mom sitting across from me, crying about her 8 month old.
…oh, but it is.
i somehow managed to walk back into that room and take my place — hoping no one noticed my exit…except there were a few tissues that had been placed on my seat by one of m’s nurses…
as the past week has gone on and i’ve had time to reflect (and cry some more) i can only say that,
we will never stop being her front line.
we will never stop struggling with her treatments and medicine.
we will never stop questioning the doctors’ protocol.
we will never stop voicing our opinions regarding staffs’ procedures, offering our input for ease of future visits and care.
we will never stop raising awareness.
we will never stop fundraising for a cure.
and we will never stop doing our best to be better.
for little c. for little m.
never ever stop.