Monday, May 11, 2015

CF Moms are Completely Fabulous

     If you didn't see enough Mother's Day appreciation on social media yesterday, here is a belated testimony to mothers, and, in particular, mothers of kids with Cystic Fibrosis.  I can't speak for all CF moms, or any of them, really, since I am not one.  I can, however, be grateful for the CF mom I have, and for how, through her guiding hand, I grew up into someone who was not limited or defined by a couple of mutated genes.

     Moms worry.  It's in the job description.  But the defining characteristic of my upbringing was that whatever worries my mom had about my day-to-day life or future as it pertained to Cystic Fibrosis, I never once knew about it.  The only worries I knew about would have been some handwringing because a baseball game could be cancelled by rain and she'd miss a chance to see me turn a double play.  I was not taught to see myself as fragile, or in need of special attention.  My brothers, two and four years younger than me, respectively, do not have CF, and my mom parented them the same way she parented me.  That I was never held to a different standard than them is, without a doubt, the reason why I always saw myself as a kid who was no more or less special than anyone else in the family.

     Moms sacrifice.  It comes with the territory.  Whatever my brothers did, I was encouraged to do too, but sometimes, our interests didn't overlap.  I didn't join my father and brothers in any hunting activities-- it wasn't because I couldn't make the long walk out to the shack, or because I couldn't haul the gear.  It just never appealed to me.  Nobody ever told me I had to stay home because my coughing would scare away the deer or spook the turkeys, which would have been a legitimate issue, but if I had wanted to go hunting, we would have found a way to deal with this wrinkle.  Instead, my mom and I would stay home when the rest of my family was sighting in their bows, or at the gun range, or back beyond the river spreading a bait pile.  We filled those hours with Scrabble, rummy, and Sequence, and conversations about life and the world as we competed.  Now, my mom joins my dad and brothers when they go turkey hunting.  She's bagged a few deer.  She even joined an archery target league two years ago.  Does that mean that all those years, during those hands of gin, she quietly longed to be staring through her scope at a ten point buck?  I don't think the answer matters.  She never said a word, and we played, and bonded, and kept track of who won and lost as though the eventual score would matter.  The truth is, we both won.  Whatever sacrifice it was for her to stay at home with me on those days, she counted them as victories.

     Moms remain strong.  It's non-negotiable.  When a mother sees her child suffer, she is literally watching a part of her go through pain.  Though she can't feel it physically, emotionally it is as acute as any poke or prod could be.  CF moms know this as well or better than anyone else.  They remain strong for the little one who is often too young to even comprehend what is happening.  In my own case, once I returned home from the hospital after an illness which led to my diagnosis at three months old, I was fortunate to not be hospitalized again for almost two decades.  However, when I was about four or five, as we got off the highway on the way to one of my routine check-ups in Detroit, I saw a church spire in the distance and exclaimed, "It's Disneyworld!"  Though she tells that story with a bit of a laugh now, at the time, my innocent excitement must have broken my mom's heart.  We were most definitely not going to the Happiest Place on Earth.  Moments like those repeat themselves over and over for CF moms-- when their desire to have a magic wand to eliminate the physical and emotional toll of Cystic Fibrosis is piqued.  But they do not give in to a sense of frustration or hopelessness.  They remain strong for the person who often cannot. 

     While I was not headed to the Happiest Place on Earth that morning, I was nonetheless in a happy place.  The car rides to doctor visits were almost exclusively with my mom, since she worked from home and my dad managed a collision repair shop in my hometown.  A two hour drive there, a two hour drives home, four times a year over the course of seventeen years... those trips gave my mom and I the equivalent of eleven days of one-on-one time together.  Eleven solid days with Completely Fabulous Mom?  A pair of mutated genes is a miniscule price to pay for that sort of luxury. 


1 comment: