By Shannon Scott
Breaking points… If only they could be preceded by brightly lit neon signs and warning sirens to spare you the rawness of ugly crying inconveniently in public. I have encountered a handful over the past four weeks since our daughter, Sadie’s, KIF1A diagnosis.
One particularly painful one happened at a parking area near a walking trail overlooking the lake. I parked there to listen to some CD’s of a lecture for school. I was so pleased that my husband had suggested parking there instead of holing up in the dark library. I was anticipating the perfect blend of productivity and rejuvenation.
I settled in to enjoy the ambience of the lake and spring sun as I popped in a lecture on “Asthma Management”. Betraying any productivity, I glanced from my notes over to the car that pulled up beside me. Two young girls, maybe 3 and 7, and their mother hopped out in their Michigan spring apparel – rain boots and winter jackets gaping open. The youngest began an adorable wiggly march to the trailhead. Then SMACK. That was it. My studies completely derailed, just like my life. I am sobbing. Jealous thoughts are racing through my head.
“Sadie will never get to wiggle march unencumbered!”
“She doesn’t get to wear adorable rain boots! There aren’t any that accommodate orthotics!“
“That innocent Mom herding her kids doesn’t know how lucky she is to have kids who can run away.”
And lastly, “THIS IS NOT FAIR!”
I phoned a dear friend who deciphered my broken, snotty thoughts and welcomed my disdain for the mystery happy family. She let me hate the innocent family, bitch about God, and whine about my course load. She offered up the one glimmer of rationality she could, “The only thing I can figure Shannon, is that Sadie is here to shape your lives in a way she couldn’t without this diagnosis; but it does totally suck.” I believed her because I needed to. Phew. Sniffles. Hit play. Finish lecture.
The latest breaking point was yesterday, fortunately at home but unfortunately about two hours before the family Easter dinner. I just enjoyed a wonderful day with a well-rested little lady. Benignly enough we were playing in the living room and I had PANDORA cranking out some tunes as we waited for Dad to get off work. I often joke that there are “shuffle Gods” who choose the playlist, and yesterday they struck a chord that was exquisitely painful. I was listening to a song I had heard many a time; ironically, it is called “Luckiest Man”. Just as I was trying to balance bunny ears on top of Sadie’s head for the obligate adorable toddler picture of the day, The Wood Brothers sing:
Try to keep my faith and keep my mind
Hate to lose either one when the whip cracks behind
And I can’t help but mourning just a little each night
People say everything is gonna be alright
They say I’m the luckiest man
Yeah they say,
That running is useless and fighting is foolish
You’re not gonna win but still you’re the luckiest man you’re up against
SMACK. Crippled. Sobbing into a dirty outfit I had just taken off of Sadie. I’m drowning in negative thoughts: Who is this band!? Damn you Wood Brothers, I’ve got no time for this!
Fighting does feel foolish. I can’t possibly continue, how can I? I imagine her losing the ability to stand or talk. I picture Sadie having uncontrollable seizures. This isn’t fair, I hate this!
I phone my husband, “Please come home, I need a hug, this sucks”. Ugly cry is not his native language but he catches on quick. Slightly baffled at the mystery wall I had been struck with in the safety of our own home, he talks. He nudges me back towards acceptance and away from defeat. “Remember Shannon, this doesn’t change anything, we love her and planned to give her the best life possible, we have to keep fighting”. Phew. Sniffles. He’s home. I get my hug. I glance in the mirror, oh boy. I imagine that someone asks me about my eyeshadow at dinner and that I will respond “It is called broken micro vessels, you can get it on the corner of grief and KIF1A”. I think I’m funny and laugh. We end up having a nice holiday dinner with our family.
Though inconvenient, breaking points are proving to serve a purpose. Every time I reach one, I can put words to my otherwise unexplainable mood. The fear I see when my emotions take control fuel my motivation to move forward and find a cure for Sadie and the other KIF1A patients. This disease does not afford the luxury of time. Look for the featured eye shadow on the follow up news piece being filmed today about our recent trip. The Wood Brothers got nothing on this fool.