Taking off the Mask: Ordinary Heroes

October is a tumultuous month. The rapid weather changes, the countless summative assignments to grade, and the onslaught of extracurricular commitments pile as high as the leaves on the ground. And yet, with every low comes a greater joy - a hint of merrier and brighter moments to come. With costumes donned and the promise of candy to sugarcoat cold and rainy (or snowy) evenings, who could deny that this festive time of year brings happy memories? While October continues to be one of the most trying months of the year for me, I often leave this autumn month with fresh insight and a renewed sense of hope.

My first year teaching, Halloween was the first sick day I had ever taken. Plagued with the stomach flu, an illness that torments me at least twice a year, I decided to stay home from school. Josh happened to be working from home, and me being a perpetual multitasker decided that our time could be best utilized by easing the nerves I was feeling toward our pending nuptials by driving to the Cook County Courthouse and getting married - legally. Because the most logical way to heal an unsettled stomach is to legally formalize a lifelong commitment. This mildly impulsive action allowed me to work ahead and complete all the necessary paperwork to become a Sukow officially, and being ahead of the November 28th deadline was, at the time, an ideal way to maximize my sick day. But more than that, this afternoon allowed us space and time to make this moment about us - not our families, not our friends, not our students, and not the people we are blessed to love in one capacity or another each day.

Flashforward nine Halloweens later, to the moment I hold my newborn son in my arms. My heart was fuller in those first few weeks of Jordan’s life than I could have imagined when I was riding in the passenger side seat of Josh’s black, hand me down Toyota Matrix nearly a decade prior. My son. The final piece of my heart that I so desperately dreamed about for years, the piece that I thought would never come to fruition, snuggled peacefully in my arms as we watched Monsters Inc. with the girls dressed as Sully and Boo. Tiny Mike Wazowski cooed quietly until my phone rang. Placing him into his bassinet, I answered the call, expecting to hear that my mom would be fashionably early to Trick-or-Treating. But as I greeted the caller, the voice at the other end was not my mom’s voice but that of my child’s doctor, frantic and near-tears, exclaiming that she had been trying to get ahold of me since the day prior. There was an irregularity with Jordan’s newborn screening results. She had been researching specialists for us, and we had to make an appointment immediately. I had received the call that no parent ever wants to hear, and at that moment, I was paralyzed by an insurmountable fear. 

Two years ago today, my mind raced to each prenatal doctor’s appointment, each additional test that had been ordered because of my dangerously low iron count or vein condition that made this pregnancy unbearable. I had questioned at every part of the process if my baby was healthy, and I was reassured that my instincts of fear and worry about my son were merely unnecessary stressors that flooded the minds of many expectant mothers. But I knew, because a mother always knows, that there was a reason to be concerned. The sorrow that resulted from that initial diagnosis was followed by a hope that perhaps a visit with a specialist would disprove our greatest fear - that our son would face an incurable, chronic and ultimately fatal, genetic disease. Faster than a speeding bullet, my mind raced toward the worst-case scenario. Because that’s what any parent does when it comes to cryptic news about their child. But as the authors of Batgirl #5 so wisely state, “Everything doesn’t have to be about fear. There’s room in our line of work for hope, too.”

And on Halloween 2019, there is an abundance of hope for our CF warriors. This week, the FDA approved Trikafta, which “targets CFTR proteins affected by gene mutations to help them function more efficiently in the body” (Cystic Fibrosis Foundation). Essentially, this miracle drug counteracts the effects of mutation F508del, which 90% of CF patients (including Jordan) have. This medication is not a cure, but the results of this medicine mean an immediate and significant improvement in the quality of life for those who can take it. This treatment means more happy and healthy years for people 12 and older who are struggling with the side effects of this disease. Ultimately, this breakthrough changes the trajectory of Jordan's life in ways I cannot fully grasp right now. And on a much grander scale, the research and breakthroughs happening with this type of genetic modification provide hope for countless people who suffer from genetic diseases. The people doing this research are our superheroes whose findings will continue to impact so many lives.

The momentum of this breakthrough reaffirms our unwavering belief that Jordan will have a happy and healthy life. Because of his diagnosis, he will lead a life called to serve and advocate, and our family will appreciate this life in ways that we never imagined. For now, this super family will keep fighting the good fight, working to save the day - one moment and one smile at a time.

For some, Halloween is a time to put on a mask and assume a character for only one day with the promise of candy and fun, but for me, assuming a new role on this day has allowed me to move forward stronger than before. As Superman quips in one of his many iterations, “I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” Well, Superman, we certainly will try.