Take Off the Mask: You are Enough

Halloween is not one of my favorite holidays, but as soon as the calendar turns to November, it indicates that Christmas is almost here. Since my oldest daughter Harper was born, we take out our Christmas decorations right after Halloween because I was home on maternity leave and had the time to decorate. Since then, it has become a tradition to enjoy the holiday season by embracing all things Christmas as soon as the leaves fall. 

Halloween has also marked some significant life events. On Halloween in 2008, I called in sick for the first time in my career. I had the stomach flu and had a long list of wedding tasks to take care of - including getting our marriage license. Josh stayed home, too, and we ended up getting legally married and crossing off one of the major and, perhaps, the most legally significant tasks left on our wedding agenda. Halloween is also the day that we received a frantic phone call from our children's pediatrician that Jordan most likely had cystic fibrosis. In 2017, our lives forever changed as we received a phone call that every person fears receiving. After hanging up the phone and frantically Googling CF, I remember moving through the motions and attempting to "do Halloween" with three small children dressed in Monsters Inc. costumes huddled around me on the couch. We went to houses, said Trick or Treat, took the pictures and went through the motions. 

Every year, as Halloween approaches, I reflect on the masks we often wear - masking our feelings, masking from COVID, masking to cover up or hide from what scares us. For so long, I coped with Jordan's diagnosis, the pandemic, and really any fears of being a parent by filling my days and schedule to capacity. I scheduled every second, so I didn't have time to process the pain and fear that I was living with. The bustle of a full day masked and suppressed my fears. However, the busyness of being a teacher, coach, friend, and more made me feel like a less-than-adequate mom. If I was busy being everything to everyone else, could I be an adequate mom? Society often expects women to juggle many roles, and it also expects them to excel in all of them.

I gave up a few parts of my life I loved this year because I thought it would make a statement that my family came first. By limiting myself and conforming to a role that others expected me to play, I would make myself more of a mom. For several months, I felt pressure from almost every person in my life to pull back and refocus on my family. What I learned in this process is that by denying who I am and attempting to remove parts of myself, I would become what I feared most. I would become less-than-adequate. By listening to this invisible pressure to fulfill society's expectations or to show that I would put my family first, I lost myself. Still, in doing so, I unknowingly removed a mask I didn't even realize I was wearing. Masking my fear with positivity and joy, I was able to play a part that allowed me not to process the deep-seated pain I had endured. Through this painful process, I have rediscovered myself. 

Halloween is a time to try on and play out different roles in life. We ask children to imagine what might be, and we can embrace those possibilities as well. If we think of a superhero like Superman, who is continually asked to save the world, we imagine a character with infinite strength flying through the sky. We don't often associate with or think about his other role - Clark Kent. He is both a superhero and an ordinary person working as a journalist. He plays many roles, both of which have value and impact the world. Superman can play both roles well, and in fact, in many iterations, he longs for the role that many deem less valuable or less impactful. I understand Clark's desire to serve quietly - not wanting to take credit or stand before flashing lights. I also understand that his power is not limited to just one role or one path. This character often works against societal expectations to hide his superhero identity. 

Through my own evolution this fall - losing and rediscovering myself, I have learned that I do not have to give up parts of myself to still be my version of supermom. My kids are the greatest gift in the world to Josh and me. Whether we are driving to dance class, crawling into Harper’s bottom bunk after an incredibly full day, or falling asleep at the fall play (Jordan did reluctantly fall asleep at the fall play this year - even though his version of superhero high school pals were onstage), we are a team ready to tackle our ever-growing to-do lists. What others might not understand or see as valuable can still hold value for me - for us. In fact, I learned that it is okay to move at superspeed if that is what fuels my work and passions. There are no limits to what we are capable of - regardless of what societal expectations may imply. 

This fall, my church asked me to speak on the future of our faith, which, again, has caused me to consider what might be. Our love, like God's love, is not finite. Our love and our capacity for joy are abundant, but only when we are true to ourselves - when we recognize our gifts and use them with intent. We are not put on this earth to fulfill someone else's definition of who we were meant to be. Instead, we must follow our individual callings. We do not have to mask or hide who we are to fit someone else's plan. 

My children, who are three of the most joyful people I have been blessed to know, have shown me and continue to show me that it is vital to be unapologetically ourselves. Despite their circumstances, my children remind me to find the good and that it is okay to put one thousand things on our to-do lists.

Jordan has spent the last six years of his life in and out of doctors' appointments, hooked up to a chest compression device, and taking countless pills to grow and thrive. His joy and love are gifts innately within him but also a reflection of all the people he has been fortunate to meet so far. He doesn't ever say no or turn away from an experience that brings him joy. He dances to his own beat and does not conform. He's defied many odds and continues to tackle any obstacle set before him unwaveringly. May we all continue to remember to find that inner joy, radiate love, and remember that we are capable of so much more than what the world might tell us.

Take off the mask this Halloween. You are enough. 

Caring Beyond Fear: A Caregiver's Path to Healing

Attending a CF clinic involves a revolving door of doctors, including the pulmonologist, nurses, geneticists, nutritionists, social workers, and more. While we don’t need those specialists for every quarterly appointment, their presence offers essential ongoing support for Jordan’s care.

For the first two and a half years of Jordan’s life, we made it a point to be present at every appointment. Whether monthly or quarterly, we tag-teamed these experiences to support each other, learn everything about Jordan’s disease, and present as a united front. For years, Josh and I have attempted to keep in the giggles when the social worker, who mostly helps us with insurance and advocacy, attempted to therapize us while playing with Jordan during appointments. Our strong bond and willingness to openly express our emotions made us feel ready to handle any challenge we faced with Jordan’s health. When times have been tough, we have never shied away from embracing our feelings and felt ready to cope with what came next.

However, the onset of COVID introduced an unexpected plot twist. Hospital restrictions and the general fear for the health and safety of our family meant that only one of us could attend Jordan’s appointments. Suddenly our confidence in navigating Jordan’s health wavered. We stopped seeing close family and shut ourselves up from the world long after isolation restrictions were lifted. Masked and distanced, we stopped hugging people and set boundaries that involved not eating in a restaurant or traveling until halfway through 2023.

My solace during this time was pouring ourselves into work and our community. While I couldn’t physically be with friends, family, and colleagues, I could show up for each and every person by supporting their technology needs, researching and sharing best teaching practices, and giving small gifts and cards at every opportunity. I became so entrenched in serving others that I quieted my fear by giving more.

Reflecting on the aftermath of the pandemic, I still find myself unpacking the trauma that COVID left behind. Jordan began taking Trikafta - the miracle drug that means his life expectancy tripled and then some. The fears and anxieties that held me captive for three years and three months started to release because I no longer had to jump after coughing or sniffling. The end of the school year meant I could find peace and fully reenter a world I had kept my family from for years out of necessity. Despite the progress of the world around me and the medication that finally meant that Jordan would be able to handle a cold - or COVID - with some normalcy, my head and my heart began to find conflict.

Serving and supporting others is a worthy and honorable pursuit, but when it is used to quell fear and anxiety, it becomes a stopgap in coping with trauma and fear. I moved the goalpost to process the grief and loss I felt during 2020 and the years that followed, in which my family still had to follow careful COVID protocols as we waited for Jordan to become old enough to take Trikafta.

These last few years, I have worked to be the best mom by compensating for what my children missed out on by making elaborate virtual birthday parties and by filling their every second with activities and action. I worked on being the best teacher, coach, and colleague by making sure that I could anticipate every person’s needs and provide them with every bit of support they could possibly need. I wrote over a thousand cards and baked my body weight in chocolate chip cookies. These actions gave me purpose and direction but did not calm my anxiety or help me move forward from pandemic life.

 
While I started moving about the school like normal and engaged with others for work purposes only, I still felt uneasy about the germs I was exposing myself to daily. I worried constantly and made sure that I didn’t get sick. We still haven’t tested positive for COVID, although I am pretty sure we had COVID in May - when I had the most significant panic attack of my life. Still, these flashes of fear continue to hit me - when I smell smoke or hear accessive coughing. I am still worried that I will make my immunocompromised child sick if I get sick. Now I get it. I understand why caretakers are often carefully watched by medical professionals. I know that I must rediscover the balance between what my head logically knows to be true and the pain my body feels from the pandemic living to the present.

The journey toward healing remains ongoing. Being a caretaker of a young child with health concerns that could escalate from zero to 100 in minutes. I will continue to navigate what this new sense of normalcy means for my family and the peace that it promises to bring.

The journey of a far-too-caring caregiver is one of constant adaptation. It is a challenging path, and it is sometimes hard to find balance. I am starting a new journey, one that is pushing me out of my safe space. As I start this school year, I hope to authentically be myself to open myself up to new people and new experiences. While I still am trying to shake off the fears I internalized during the past three-plus years, I hope to redirect my anxieties with purpose and find new people to pour into - not because I’m trying to survive but because I genuinely want to learn, grow, and make a difference. COVID amplified the challenges of many and certainly magnified my fears. While healing is not a linear process, I aim to move forward stronger and more resilient. I am no longer in survival mode. I can finally step forward and reclaim a little bit of peace as I start a promising school year.

Coping with the Changes: Fostering Resilience in and Out of the Classroom

Today, I learned that Jordan may be the oldest child in the United States on Trikafta in granular form, the miracle drug that will improve the quality and longevity of life for people with cystic fibrosis. At the age of six (88 days), he will begin taking Trikafta in pill format.

Currently, Jordan takes this medicine twice daily. We've been dissolving the crystals in water and Gatorade and also learned that he can take them in yogurt instead of drinking a salty-tasting liquid. He's a trooper and continues to show his resilience. He never complains about the medication, treatments, or doctor visits. While his health is still closely monitored (especially for bowel obstructions), there is hope that this school year will be relatively normal for him.

Observing Jordan's strength as a parent inspires me as I navigate challenges and life changes. We cannot control everything that happens to us, but we can control how we respond to these situations. Jordan is rarely phased by treatments, medicine, and being poked and prodded by doctors. How do we handle challenges and life changes like Jordan? How can we help foster resilience in our students?

Take stressful situations and times day by day.

Life is full of surprises, and unfortunately, not all surprises are positive. We will all face adversity that stretches our mindset and choices. My son is and appears to be an incredibly healthy child. The quality of his health can go from perfectly healthy to a potential hospital visit instantly. His bowel obstruction seems unexpected and can derail any plan our family follows at a given time. Because his health might become a concern without much warning, I have learned that I cannot worry about stressors that might come. I have to live in the moment, taking each day as it comes.

As an educator, I like many teachers, am a planner. I realize, however, that we cannot plan every moment of the entire school year at once. Should we still have overarching goals and long-term plans in place? Absolutely. But in difficult times, having short-term goals makes a negative experience feel more like a drizzle than a downpour.

Short-term goals allow us to feel the success of accomplishing a task or overcoming a small hurdle. The positive feelings from achieving a small goal begets future, long-term success. Teaching our students to create short-term SMART goals can also empower them to navigate their challenges and obstacles.

Be okay with being uncomfortable.

We can do anything for a short time. Embracing short-term discomfort can be informative and lead to unexpected lessons learned. As a parent and educator, my instinct is to clear the path and reduce the obstacles that my children and students face. Still, by doing that, I am robbing them of the learning opportunities that come from failure. When we accept discomfort and live in that space, we also become more confident. We start to identify our values and priorities and shift our thinking toward growth.

When we help students accept their discomfort, we allow them to stretch themselves, innovate, and reflect. If they feel safe to fail, they are more likely to grow. Creating an environment where failure is okay comes from frequent reflection and class conversation about what it means to be successful learners. These conversations must be ongoing as we constantly cycle through the learning process together.

Describe your feelings and model vulnerability for others.

Living in discomfort comes with many emotions that are likely to shift. Describing those feelings and putting words to how we are processing challenges fosters critical thinking. It also creates a space in which students feel safe to share their feelings. We cannot learn in silos, and working in isolation often wastes time and resources. As educators, we need to be able to talk through what we are experiencing and also problem-solve with other educators. No one is perfect, and even the best teachers have tough days. When we are open to discussing circumstances and working collaboratively with others, we can leverage our vulnerability to grow together.

We have to be intentional with helping students put their discomfort to words, too. Making it seem like we have life perfectly mapped out ourselves creates unrealistic expectations and exacerbates their insecurities if they aren't living up to a specific standard. When we show our vulnerabilities, students are more likely to self-disclose what they think, feel, and learn. This mutual sharing of feelings and ideas only leads to a stronger learning community.

Read, research, and reach out.

As stated in the book, Recipes for Resilience: Nurturing Perseverance in Students and Educators, "Learning is for everyone. Make a commitment to yourself to expand your knowledge and expertise, and in turn, your environment will flourish" (Robert Martinez). We are always learning about ourselves, our relationships, and our practices. To better serve students, we must be active learners ourselves.

I am working on being okay with not having all the answers and moving slower and with more intentionality. I am learning that to serve others, I cannot just give them all the answers; I have to empower them to discover more about themselves and their professional practice. We do not know what tomorrow brings, but when we embrace the learning journey, we are better prepared to face and learn from it. True success does not come from knowing all the correct answers ourselves; it comes from helping others to find their version of success.

 

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Let the Wild Rumpus Start: Lessons from a Wild School Year and a Little Boy Named Jordan

A teacher's life is measured in bells, grading periods, and seasons. As a speech coach, my professional life is defined by my in-season and not in-season paces. My 204-day season ended. Cue the feeling of lightness and the creative energy flowing back into typing fingers. I've recently entered my first "free" weeks of the 2022-2023 school year. Speech team starts the first full week of August and ends the third Sunday of February. No longer having to rush between picking up my three littles from the bus while coaching 30ish of the best wild things around, I took a deep breath and felt a new sense of calm before being jolted back into the roaring world of Cystic Fibrosis.

Jordan started feeling fatigued and had no appetite at the end of February. These past two weeks have kicked me into high alert. CF impacts all organs and can impair the digestive system. Without pancreatic enzyme supplements - Creon - Jordan cannot absorb his food and, more importantly, does not have the fuel to function properly. My heart has been heavy worrying about his health and watching for signs that the bowel obstruction needs more intense medical intervention. As a teacher and instructional coach, I navigate rocky waters with joy and a more focused approach. I could be called home at any moment, so I am compelled to have all of my organizational systems in place in case I need to be absent.

Parenting a child with health concerns has helped me to pause and reflect on how I can better empathize with my students and colleagues, especially as we approach spring break. Transitioning out of the winter months into spring is a difficult time for all. From season shifting and staffing changes to restless students - we are all navigating and fighting our own battles. I realize that whatever beasts we face, we have the power to guide the narrative. No matter how dark the jungle gets, we can find the positives and shine a light on the lessons our students and colleagues must face. Inspired by my precocious son, who is braver than anyone I've ever met, I reread Maurice Sendak’s Where The Wild Things Are. We all have a little curiosity in us, and our perspectives can sometimes make our challenges feel insurmountable. But again, we can shift the story to gain powerful insights.

When change happens, we should approach it with curiosity.

Just like Max in the book, curiosity can lead to adventure. So often, when changes occur in the school system or even in the curriculum, we become consumed by negativity or resistance, but changes can bring new insights and perspectives. They can shift the landscape of what we learn or how we might learn it. Working with high school students, I have noticed more senioritis as we approached a challenging, research-based unit. The skills they learn in this unit involve:

• Critically analyzing sources.
• Finding and applying information.
• Engaging audiences - all skills that will help them pursue higher education and be more active citizens in the world.

Instead of dismissing their complaints about "how much work they had" for this particular unit, I worked with them to shift their outlook. Getting excited or asking them to seek out topics that sparked their curiosity made an arduous task more approachable and ultimately left them saying, "Huh, that was actually fun."

In addition to sparking curiosity about change, we need to create spaces where people want to belong.

Even in the most ideal places, morale is still low. Navigating a post-COVID world has brought shifts in student behavior, new social-emotional needs of both students and staff, and gaps in knowledge/executive functioning skills. To produce the best environments for kids, we need to ensure staff feels supported and safe to fail. Teachers must feel appreciated and seen, especially as we redefine "normal." Even though there are fewer mitigation procedures to deal with and COVID is not impacting us daily, the effects of pandemic learning and the fatigue that was brought on because of it will be felt for years to come. When teachers feel valued and are given space to cope with their challenges - whatever they may be - they can create the best learning experiences and opportunities for students.

I have cultivated a supportive work culture by creating targeted professional development. This professional development revolves around topics that work in any classroom. More importantly, it is led by outstanding teachers across the building. Giving teachers a voice, celebrating their excellence, and helping them believe in their excellent work has helped spark conversation and encourage people to get involved. My fantastic colleague Cori and I have also started a podcast to amplify the voices of great teachers across our district. These small acts of lifting teacher-leaders boost morale, celebrate excellence, and unite teachers on the most critical cause in education - elevating our students.

We can let the wild rumpus start when we feel safe and have a strong sense of belonging.

No matter what comes our way - whether it be a global pandemic, a shift in learning management systems, ransomware, or challenging students - we can embrace change when we feel like we belong. Teachers need to be supported, they need to be recognized, and they need to be allowed to be authentic. Everyone comes to the table with unique strengths, talents, and passions. When school leaders can see the best quality in each person and use those qualities to create a dynamic team, we all benefit. Education is a journey and not a destination. Even if imminent threats are not filling our newsfeeds or causing us to quarantine, the challenges will still arise. The path may become overgrown and dark at times - even when we least expect it- but our teachers can navigate any adventure when we have support.

These systems involve morale committees, frequent and clear communication, and transparency. They involve weekly emails to bullet point and highlight key changes or needs and necessitate an open-door policy. As a coach, it means that when someone says, "Do you have a second..." I am available and ready to support them. If I cannot at that moment, I set a specific time and make myself available if something is absolutely needed. It also means that I anticipate the bumps and turns in the narrative before they occur so that teachers feel safe, valued, and ready to be their best selves for their students. I know I must be ready to take action and lead in any wild condition.

I need to find time to be still and reflect. My son is early to rise and loves being silly in the morning. Holding a wiggly Jordan whose body is trying to regulate itself has forced me to laugh. Sometimes, life just stinks (literally). More challenges are inevitable. I wonder if it will involve students, staff, computers crashing, or bowel obstructions that force us to journey to Lutheran General. Whatever the challenge is, I will find a way to let my imagination run wild, have hope, and roll with whatever adventure comes next.

 

Rewriting the Narrative and Remembering What We've Gained

With a zero second commute time from my kitchen to my new work-from-home dining room, time should be in abundance. Yet the minutes have been filled to the brim with laughter and laps around the house as my daughters chase their little brother, who is now convinced that he is a reindeer.  

Today I came home from school where I can sequester myself in the rebranded in-school suspension room I like to call the InSpiration Station, only to realize that Jordan has a clinic again - his quarterly check-up at Lutheran General Hospital. This visit will be the second visit that I cannot attend and mark approximately nine months since the first shutdown and the last time Josh and I were both able to attend his clinic on March 12th. This regularly scheduled visit had become a joyful ritual for our family in which the children would find the indoor train upon exiting the children's hospital as I reviewed the dozen or so questions about his growth, enzyme dosage, and treatment times in my head. 

Most people would not say that they find joy in frequenting a hospital. Still, my family has found great solace in the incredible care that Jordan receives and the habits that have continued to allow him to thrive despite the challenges that are sure to catch up to him one of these days. The more I learn about Cystic Fibrosis, the more my faith is strengthened - not because I believe that everything happens for a reason. I understand why people casually use this phrase to show empathy or diminish the pain of difficult situations, but I do not agree with its sentiments. There is no reason for illness and suffering. Instead, my faith is strengthened because I am able to witness incredible people making reason out of the obstacles placed before them. I am able to witness the positivity in people and the drive to make medical advancements that improve the quality of life for countless people. 

When Jordan was diagnosed in the fall of 2017, our favorite nurse grabbed my hand and told me that CF people shine. People with Cystic Fibrosis possess a unique quality about them that cannot be explained by science, although perhaps there is a genetic mutation that has yet to be discovered for cuteness. When all of my worst fears as a parent seemed to become our reality, Jordan's care team was able to help me reframe my mindset and stop focusing on what he lost the day he was diagnosed and start to celebrate what he had gained. As a family, the diagnosis of this chronic and often terminal illness gave us a deeper sense of appreciation for every moment and the understanding of how to continue to create meaning in our everyday lives. 

As Jordan continues to grow, I am in awe of this silly little boy who laughs at everything and is unaware that he has spent over 30% of his life in quarantine. We started quarantining Jordan in January of last year because of a particularly rough flu season that seemed to be circulating in our community. A common cold had previously led to a bowel obstruction that landed him an overnight stay in the hospital. While we remain optimistic and want our son to experience every aspect of life to the fullest, we have to social distance during times of the year when people are sick. Cautiously we have to survey our family and friends about colds or any sign of illness before we attend playdates and family functions. These practices are part of life for our family. 

Enter the pandemic of 2020 - a time in which everyone is told to social distance and avoid any type of exposure to illness. Welcome to the life of a person with Cystic Fibrosis world. The idea of wearing a mask in a crowded space or avoiding public places during flu season seems foreign to most but have been constant thoughts and precautions we have taken since Jordan’s birth. 

After Jordan's initial diagnosis, I remained paralyzed on my couch with fear. I didn't sleep, I didn't eat, and most importantly, I didn't live my life. I allowed myself time to grieve for the boy I thought Jordan was and the life I thought he'd have, and then I began to imagine the beautiful person he'd become.  While I still jump when I hear a cough and worry about his digestive health daily, I am not consumed by his illness. When I need to be anxious, I am, and then I move forward. With the coronavirus looming over us all, we, unfortunately, have to be hard to lockdown as a family. We don't go to restaurants, we barely go to stores, and we don't see our loved ones in person. Bringing COVID-19 to Jordan would surely result in a hospital stay and would most likely decimate his organs, the organs that we work so hard to keep functioning properly on a daily basis. His body reacts in extremes to any illness, and the consequences would most likely be more frightening than I want to acknowledge. Despite what we are missing, however, I do not believe my family is losing anything (Sans seeing and hugging our loved ones in person, but technology and creativity have made that situation better). 

While quarantine fatigue can be overwhelming and every day seems stuck on repeat, I refuse to allow myself to perpetuate a narrative of loss. My son has friends, he loves everyone he (digitally) meets, his vocabulary is more developed than his sisters were at that age, and he is constantly running, playing, and laughing. Lately, he thinks he's a reindeer and spends a great deal of time growling, but I am told that is "normal" behavior for a three-year-old boy. 

As a society, comments have been made about the lost generation that the coronavirus is creating, but I challenge us all to rewrite the narrative. When we tell people they are lost, we permit them to disengage and to become paralyzed by the list of what they are missing. Our children look to us to understand how to cope with life's joys and hardships. We should always acknowledge and embrace our feelings - especially feelings of sadness and loss, but we cannot allow ourselves to become consumed by them. Instead of focusing on what we've lost, we should discover and celebrate what we have gained. Reframing the narrative does not deny our pain and our struggles but rather allows us to move forward - stronger - with them.

My mission as a mother is to ensure that my three beautiful humans have equally beautiful lives. While Jordan's journey is one that I did not expect, his life will be full. Someday, I'll release him from his bubble wrap, and when that happens - look out world.

On this giving Tuesday, if you're looking for a cause to donate to, check out Jordan's (and my) Great Strides Page. You can donate to the Cystic Fibrosis Foundation, which has directly funded and researched several great advancements in treating and one day potentially curing Cystic Fibrosis. Because of medicine like Trikafta, there is more hope than ever. Want to read more about Jordan's journey, check out these past posts.

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.

Other Duties As Assigned

Three months. A seemingly short span of time and yet, a great deal can change in three months. Jordan had clinic today – often an extended appointment involving a full team of doctors. Today our appointment was surprisingly one of the more abridged experiences we’ve had in our nearly two-year venture into the world of cystic fibrosis partly because we lucked into ideal scheduling at the hospital and partly because we walked in with three small children.

Today, our arrival aligned with our doctor’s completion of another CF patient’s appointment, and the girls’ presence typically invites curious faces into the cramped room that we occupy, expediting our priority on the rotation schedule. I am happy to report that the girls were enthusiastically engaged with everyone we encountered, and Jordan only screamed for the first few minutes of his checkup – much less than we anticipated. We had to laugh denoting how healthy his lungs are if he can cry at such extraordinary decibels. (Keep clearing those airway passages, my son).

Check off “attend a clinic rotation” on the CF list of to-dos for the next quarter of the calendar year. In spite of knowing how well Jordan is doing, I still struggle in the days before it is time for clinic again. As my anxiety heightens before Jordan's appointment, I return to the notion that parenting often requires us to assume roles and duties that we never dreamed of when holding a newborn baby for the first time. Walking alongside a child in this world is full of beautiful discoveries that we share as they experience firsts and reach milestones, but being in this world means that beautiful moments are not devoid of heartbreak and heartache.

In life, we do not willingly sign up for the challenges we face. People do not naturally raise their hands, volunteering to endure painful experiences or to assume more work than they can handle, and yet there are moments when we are called to action whether it be to advocate for the health of a child or to support a much larger group of people.

At school, the byline in my instructional coach position that reads “other duties as assigned” continues to apply to the daily agenda that fills my scratched notebook, a notebook that I repeatedly leave in the rooms and on the desks of my colleagues and friends who I am blessed to work with each day. (Thanks for returning it to me each day, friends). Sometimes the list of to-dos feels insurmountable. 

Every day I ask myself, “Am I doing what’s right for kids? Am I doing what’s right for MY kids?” I have come to realize that this is a question that needs to be revisited each day. While my natural instinct is to be planned both at school and in life for the next three months straight, I continue to remember that what we do each day is far more important than where we anticipate we will be in the coming weeks or months. Plans are valuable and essential to our success, but plans should not be written in permanent ink. Plans can and sometimes have to change. Today matters and should be the priority. Instead of wishing or waiting for the holidays to come or the next chapter in life to begin, we should appreciate the here and now. The people and the experiences before us today deserve our attention and love because in that instance, and for that time, we have an opportunity to make the present moment meaningful.

Life is full of unexpected gifts and obstacles that can be used to generate positivity and perpetuate good in this world. I will continue to embrace those experiences. Whether it be an unresolvable tech issue or a daily treatment for my tiniest little guy, I will continue to seek and find meaning.

Thank you, Jordan, for teaching us all to tackle the “other duties” that have been assigned to Team Sukow this week and in this life. Life will continue to ask us to face moments of joy and moments of adversity, but again, I return to the idea that we no matter what we face, Team Sukow will face them together with great fervor and positivity. Everything does not happen for a reason, but we will make reason and meaning together.

Let the Light (And Reasons to Hope) In

The revolving door of doctors, nurses, a pharmacist, a geneticist, and a passionate and overly eager social worker flood the tiny room on floor two of Lutheran General's Children's Hospital. What was once overwhelming and exhausting has become routine. Some of our visitors gown up and poke their heads into the room to remind us that they're on our team, and others, like the aforementioned social worker, linger. While she evaluates our emotional well-being as the parents of a toddler with CF, Josh and I can barely contain our laughter. As a communications coach, I am impressed by her listening skills, attention to detail, and ability to mirror our language. Upon her exit, we typically erupt in muffled laughter as the paper-thin doors do not guard against our chortles. Still, we appreciate her so much as it is so apparent that she genuinely cares deeply about her patients and their families. During her visits, we are extremely aware of what she is attempting to evaluate with her leading questions and the distracting toys she brings in for "Jordan" to play with, and even still, we both have immense respect for and appreciate her role in the CF clinic. After approximately two hours of a constant rotation of specialists, we meet with our primary doctor, the fast-talking, incredibly positive and intelligent doctor who continues to shed light on Jordan's disease. The infectious optimism and encouragement from the entire staff, led by our doctor, has made a once arduous and painful experience more uplifting.

This most recent clinic visit gave us much cause to celebrate because Jordan's lung function is perfect (for now). He's even a little chunky - as if he's preparing for hibernation or a major growth spirt. Except for a bowel obstruction at the end of March, which was more of a learning experience for Josh and me than anything else, he continues to thrive. The more engrossed I become in the CF community, the more aware I am that there is no way to predict his progression. CF is a unique disease for each patient, and we have countless reasons to hope that he will be a healthy child as long as we continue to diligently follow his treatment protocol and adhere to his dietary needs (lots of salt, lots of fat, and a daily dose of Miralax in Gatorade, or as we affectionately call it - Jordan Juice). A barrage of emails has flooded my inbox this spring with information about breakthrough treatments and medicines that dramatically increase lung functionality and quality of life for our CF friends. Again, there is a reason to hope.

These past few months, Josh and I have learned to allow others to love on us. As kids, Josh and I found ourselves cleaning up after practice, working on projects for our musical director, or cleaning out file cabinets in the choir room; we actively sought ways to quietly serve our peers, mentors, and teachers. As teens and even into our 20s, we pursued serving a new community that focused on empowering young people to find their voices. Saving no time for ourselves, we evaded coping with the infertility problems we faced because we chose to expend our energy on others. With a little grit, we could brighten any situation placed before us, which often involved helping a teen through a life-problem or challenge. Both of our ENFJ personalities still actively seek opportunities to heroically swoop in to solve the problems of others, leaving us little time or interest in addressing our own needs. Not the healthiest life practice, but we're working on it. Having children, especially a child with unique needs, has greatly humbled us as we now recognize that sometimes we need an extra hand to walk dogs or watch the girls while we are attending to Jordan's needs. Sometimes we need to find a sympathetic or supportive ear to hear our concerns or just find a person to give us a hug on tougher days.

Our annual CF walk was this past weekend, and I am proud to say we raised over $11,500 for AJ, for Jordan, and for all of the CF community as we continue to actively look for treatments and an eventual cure for this disease. The level of gratitude that Josh and I both feel to our biological families, friends, speech squad, church, and students who all supported through literally walking with us at this event, raising or donating money to the cause, or simply giving us extra hugs when we needed it cannot be expressed in words. Through this event and our adventures into the CF community, we have learned to express our vulnerability more openly and now realize that allowing others to help us is an integral part of being in community. Helping others fosters feelings of hope.

I must admit that for Jordan's first year (and even a few months after that) of his life, I was guarded. My instinct is to smile, show more enthusiasm, and will myself into believing that "everything's fine." At home, I've held Jordan until my arms ache; I've inadvertently shielded him from interaction with people and places where germs might unknowingly hide. But as he continues to grow, I recognize that he is no longer Baby Jordan. And as a result, I am slowly learning to allow him the space that he needs to grow into the well-rounded person that he is meant to become. Patience, sharing, and kindness are all behaviors we expected the girls to begin to implement at his age; he should not be exempt from those behaviors. It's time to level-up, Stink Man.

On the brink of a word explosion, Jordan, just as any small child, needs to find his voice and learn to be the author of his own story. In spite of my attempts to empower him to exhibit his independence, I will continue to douse him in hand sanitizer. My aggressive scrubbing of the wood floors he crawls around on and my mysophobia may continue to manifest into more erratic behavior, but cleanliness is a virtue, right?

Still, life was designed to be messy. Messiness adds color to our lives and can lead to a greater appreciation for the world in which we live and for the people who comprise our village. In author Margaret Wheatly's book Turning to One Another: Simple Conversations to Restore Hope to the Future, the idea of having a village or a community is addressed. She states, "Relationships are all there is. Everything in the universe only exists because it is in relationship to everything else. Nothing exists in isolation. We have to stop pretending we are individuals that can go it alone." In this new era of my life, I have stopped attempting to "go it alone" and started processing my joys and my pain with the people in my village as they are the ones that continue to fuel my hope.

Even in the most challenging times, there is always a reason to hope. Our village or community is meant to provide us with that sense of hope, and our relationships are the lights placed on our path to illuminate the way in any season, at any time. What I've learned from these past few months is that it is okay to have hope, and it is okay to let the light in.