We've Got CF Stories To Tell...

Life is always busy in January and February. Embracing and enjoying the frenzy that was the first two months of the year have left me with much to reflect on professionally and personally. 

Recently I have been grappling with my thoughts on an upcoming movie that has the CF community abuzz with conflicting emotions and perspectives. The movie and novel adaptation of this story both strive to highlight what life is like for people living with this disease. While my son is still too young to show many of the symptoms of CF, what his life will look like when he's grown is at the forefront of my mind. Will he struggle and suffer? Will he be able to manage his medications, treatments, and still lead a "normal" life? The answer to the latter question is a resounding yes. The medical breakthroughs and treatments being released as I type this post is astoundingly positive and has made the mantra "until it's done" more realistic than ever. The Cystic Fibrosis Foundation recently hosted a virtual conference called Research Con to provide even more insight into the current reality of this disease, provide information on best practices with daily health care and preventative measures, and also brought the community of doctors, patients, and loved ones together to take strides to better understand this rare and often misunderstood disease. What I have appreciated the most about this organization aside from self-funding treatments and research that have been life-giving and life-saving, is the mission to provide accurate and realistic information about what the disease is. The CF Foundation highlights how gene-expression and gene-mutations can uniquely manifest in each person living with this disease and focuses on helping people live a full and healthy life in spite of the devastation that this disease can cause on a person's body. 

The movie Five Feet Apart, which I do look forward to seeing, set to be released this week, showcases the life of young adults living with this life-threatening condition. My fear as a mother of a toddler who has CF is that while this is a narrative of some who have this disease, it is not my son's narrative. While I do believe this film was crafted with care and made with the intention to spotlight the disease while working toward finding a cure, I worry that it will create a false idea or understanding in the minds of the general public about what the disease is. I also have concerns that people I care about will see this film and leave with the impression that Jordan should be treated as though he were fragile and weak. The film will address with the reality of the daily challenges experienced as a result of the disease, which in far too many cases includes hospitalization and premature death. As a result, death and loss will play a prevalent role in how the characters' stories unfold. I do not, however, want my family to see this version of CF and think that Jordan is sicker than he is because of what they see in the film. The disease has changed, the treatments have improved exponentially, and I have reason to hope that the stories on the silver screen are not foretelling of Jordan's narrative. 

To say that I'm looking forward to ugly crying in a movie theater for two hours is not exactly the best way to describe my sentiments toward watching this movie. This film will trigger every fearful thought I have about my son, his disease, and his future. In spite of my own mixed emotions toward the subject, I do appreciate the intention behind it and the amplification of conversations around CF as a result of its release. I do not want the discussions to stop;  I also don't want people to see one story or one truth about this disease and think they know what life is like with CF based off of one perspective or version of the narrative. 

I am so grateful that this movie has set out to build empathy and understanding for the CF community. I ask that my loved ones remember to ask me about Jordan's condition and not make assumptions from a movie or even the real-life experiences of others. The research and treatments available to him may mean that he may not struggle in the ways that some have before him, but I cannot predict his future or anyone's future. Life is precious and unpredictable; I am grateful for the now. The reality of today is that he is a happy boy who loves to sing and create trouble. His smile and laughter are infectious. CF is just a part of Jordan's journey, and I will continue to hope for a happy ending for Jordan and all those who suffer from this disease.

We all have a story to tell, and if we take the time to listen to each other, embrace life's struggles and joys, and continue to dialogue with each other, we can work to help each other along the way. This movie was made to perpetuate a version of reality for some people with the disease. It is not necessarily everyone's reality, though. Please see this movie; start a dialogue around CF. Unless your Google search algorithm has been preconditioned to find information from the Cystic Fibrosis Foundation like mine has, do not make the mistake of Googling this disease as I have done in the past. Instead, ask me about Jordan, our Superman, our stinker; I am always happy to write you into his story.

Join our walk this year on June 2nd!!! We are looking for friends to walk with Team AJD!

Being the Match

I am happy to report that Jordan is exiting his grumpy phase. For the past two months, Mr. Jordan has mean-mugged or given the stink eye to anyone who approaches him that isn't one of his grandmothers (or his grandmother's twin sister). Developmentally, separation anxiety hit him harder than it ever hit the girls. Thankfully, the "Stink Man" has started to smile again just in time for another CF appointment. The phrase "so salty" will once again refer to his sweat and not the dramatic expression on his face.

Recently, I was asked how Jordan's diagnosis has impacted my perspective on life. Reflecting upon a year ago, when I felt greatly lost and apprehensive of what might be in store for my son and family, I can say that increased knowledge about his disease has aided me in empowering my family. Permitting myself to grieve the loss of the life I initially imagined for Jordan has also allowed me to gain insight into how precious and fleeting life is, which has made this past year joyful in ways that I could not have ever expected. Of course, I am not grateful for Jordan's disease, nor will I ever entirely be at peace with the genetic cards dealt to him, but I am working to make meaning of this situation and enrich the lives of my children and those around me every day as a result.

As an educator, my instinct is to seek answers to questions through extensive research and reading. Scouring the CF Foundation's website for information on trials and promising new drugs being released continues to provide me with hope and comfort. Listening to podcasts about health during the holiday season and how to keep germs away has heightened my awareness of how to bolster immunity and protect Jordan from colds and other common illnesses that might damage his lungs and overall health. Connecting to the CF community through social media posts and reading the stories of young adults who thrive in spite of the many challenges that CF has placed before them brings me tremendous comfort as a mother. Jordan will grow, love, and contribute to this world in amazing ways.

I know that in spite of the truly horrible illnesses and struggles that Jordan may face, he will have a much larger family of people behind him who can empathize with him, encourage him, and love him... from five feet away (check the CF Movie's trailer). CF people are encouraged to avoid contact with other CF patients because of the highly contagious nature of the bacteria that grow in their lungs. Even though they should not physically touch each other,  the ways in which I have witnessed people with CF touch the hearts of other people with and without CF is inspiring and incredibly encouraging. We are blessed with this community of people who are so willing to love, listening, and support - all further reminders of how important these attributes are to convey and share with anyone who crosses our paths.

In my quest to understand his disease further, I came across a bone marrow donor website. While bone marrow has nothing to do with CF or treating Jordan's disease, I continued to read. Initially under the impression that this process required a substantial recovery period and invasive surgery, I was surprised at how relatively simple the procedure is, albeit the procedure is alleged to be painful. After thoroughly reading about the process and the Be the Match organization, I have officially submitted my DNA to be part of the bank of donors to give my bone marrow should I match with a person in need of this life-saving procedure. While I cannot save my son from his genetic fate, perhaps I can help to save someone's son or loved one who suffers from numerous blood diseases and various types of cancer. We are all called to serve our fellow humans. For me, serving in this capacity brings me a sense of renewed hope that medical advances can improve the quality of life for many people. While the diseases may be different, someday I may walk in similar shoes of a parent whose child might be struggling and need a life-saving treatment. Momentary pain of donating bone marrow in this instance can bring a lifetime of happiness for another family, and for me, that brings comfort.

Each day I continue to believe more deeply that everything does not happen for a reason. There is no reason for suffering; tragedies lack logic. However, we choose to learn and grow from what is placed before us. Without obstacles to overcome, we might never fully feel the true depth of love or understand the solace that can be found in sacrifice and serve. I continue to actively choose to create meaning in the life that has been given to me and will continue to challenge my children to do the same. Through our actions, we can choose to be part of a positive change in the world around us, and while each day will not be without pain, our attitudes and strength that we will draw from each other will make it the best day possible. We will live happily, and we will seek ways to serve those who walk alongside us. And for that, the days granted to us will be full.

When September Ends

October finally hit. At eight months, Jordan’s position had shifted off the vein that was causing unthinkable and constant pain to the right side of my body. The swelling and bruising began to wane. If the remaining six weeks were like this, I could happily carry him to term. After months of throbbing legs and continuous discomfort, I felt relief. In that first week of October, when a physical sense of comfort came and the excitement of completing our family with a beautiful baby boy became my focus, a thought crept into my mind – something suddenly feels too good to be true.

October - a season of change. Crisp leaves are now crunching on the ground marking the turn of another season and the passage of time. The fall is typically a season that has marked significant changes in our lives - an engagement, marriage, purchasing our home, and the birth of all three of our children; we have had a busy decade. While the air cools, our hearts have been warmed by a growing family and hope for many happy memories to come. This fall I have found myself transported back a year ago when my mantra was “Life will be so much easier when he’s out.” Acknowledging that this mantra was far from the truth was a difficult reality for me to accept. As these sentiments continued to echo in my mind for months after his birth, I grieved the notion that his life was going to be free from the worry and pain that had dominated my pregnancy.


This year has challenged me to reconsider how I choose to devote my attention and energy. Finding more profound joy in the everyday moments that we often take for granted is at the forefront of my mind. Life is fragile and precious, and the moments that are sweet should be treasured.

Flash-forward to the present, and I cannot believe that Jordan is almost one year old. With shining blue eyes like his father, he is captivating and charming. He single-handedly has pulled the paper roll off doctors’ tables on several occasions and knows how to make nurses laugh. Already, he likes to play chase around our living room floor, even though he lackadaisically moves and selectively chooses when he wants to sit up. As the third child with two older sisters who regularly pretend to play mom, why would any small child feel compelled to move independently?

I am filled with a quiet trepidation with this calendar change. Jordan, no longer a baby, may now face more complications, more treatments, and more unknowns. At the same time, his personality is growing. Jordan has been snuggling more than ever before and makes his opinions about toys, his sisters, guests and our dogs known to the world. First words are budding, and laughter is at an all-time high. Unaware of any challenges that he may face, he looks at the world with fresh eyes as he seeks smiles from the people he loves. Hoping to see the world through his lens, I know that maintaining his health seems daunting to me but is his version of normal. Understanding more about his body than the average little boy, he will always know a world where he is reliant on enzymes to digest and absorb fat and salt. He will always have lung treatments and need to be cautious during flu season, and yet, he will have a deeper appreciation for each breath and each opportunity he is fortunate enough to experience. In spite of Jordan’s disease, I can breathe a sigh of relief. While I am still struggling with accepting his genetic fate, I am hopeful that he will have a unique outlook on the value of each day that will allow him to have a beautiful life.

Super Jordan

Still, my greatest fear is an ache that any mother feels - that my child will struggle or suffer. My husband reminds me that we all will suffer at some point, but we have loved ones who will help us through that pain. Placing myself in moments when extreme allergic reactions or seasonal sicknesses have tightened my lungs, I realize that I have only felt a temporary, minor discomfort when compared to a CF person’s struggle to breathe each day. I cannot even begin to imagine this struggle. I don’t want him to feel that pain, and I know that witnessing that pain will always weigh heavily on my heart. Just as a runner feels when nearing the end of a long race, this emotional fatigue can be overcome and a hurdle can be tackled.

Very early in our journey with CF, my brother reminded me that when a time comes to worry or feel anxiety, he will be the first person to embrace those feelings if necessary, but until then, we should choose joy. As I consider the values and strengths countless distance runners like my brother embrace, I am encouraged by their stamina and beliefs that a single human can accomplish great feats through discipline, training, and willpower. “Pain is temporary, but glory is forever” is a quote famously quipped by the distance runner, Steve Prefontaine, who served as my brother’s hero when we were in high school. While I can appreciate a person like Prefontaine with mental toughness and physical prowess beyond measure, I’d like to argue that Prefontaine only had his mantra half right. Pain IS temporary, but love - love is forever.

Just Breathe

Nine months in; nine months out. Jordan has reached another milestone. He's the largest baby I have had at this point, weighing 19 pounds (chunky monkey), rolling and babbling (or singing) nonstop. While he is still refusing to crawl forward, he does creep backward similar to how Harper did at that age. 

His diagnosis still baffles me. When I look at my son, I see the healthiest of my three children, but I know that his growth and size has not been without constant monitoring and over-fortifying his food intake. Jordan consumes approximately ten additional ounces of milk compared to his sisters at the same stage. Also, his milk contains formula, vitamins, and is topped off by a spoonful of applesauce covered in enzymes. When people comment on how large this baby is, especially in comparison to my other children, it catches me off-guard because we weren't expecting him to be the bruiser that he thankfully has become. BMI is crucial to CF kids because it often predicts lung functionality in the future. I am elated to report that he is in the 48% for his BMI - meaning he's a strong baby with strong lungs! 

Still, I am careful to realize that positive news can change faster than I'd like. Right now, our priority is his digestion. If he doesn't have his enzymes, he won't absorb the nutrients put into his body. We monitor his intake with great care, and in turn, we scrutinize his output to analyze whether the enzyme dosage is still accurate and if the calories consumed counted. Changing his diaper is a two-person job only because it can provide us with so much needed knowledge about our son's health. We also test his skin to monitor his sweat; Jordan sweats out salt at a significantly faster rate than the normal person, which means he may be depleted of necessary vitamins and nutrients that he needs to maintain his weight. The phrase "so salty" has a completely different meaning in our house.

Amazingly, he has had not needed lung treatments, although we have started chest percussion therapy to make him more acquainted with this treatment when he really does need it. This therapy involves forcefully tapping or hitting key areas on his chest and back to clear his lungs of any mucus build-up that may occur for approximate 10-15 minutes each day. Regarding his overall health, barring one cold in January that Willa also had, which led to a brief stint on a nebulizer, we have been blessed with near-perfect health with Jordan. This prognosis will change, of course, which leaves us jumping with every teething induced cough or breathy sigh that any baby produces when he is rolling around on the ground. The question of, "When will he get sick?" and "How sick will he become?" haunts me. When I actually take a moment to be still, I have to admit that I find that these questions creep into my mind and can consume my thoughts. I have tried to remind myself that I could ask these questions about any of my children or any of my loved ones. Life is fleeting and can change all too quickly, and as a result, it is not productive to allow myself to drift into a future that is not currently my reality and might not ever be. 

Scouring social media for answers has led to peace of mind and also fear. I want real stories; innately, I am not satisfied until I fully understand a problem - so can I find an answer to this one? The answer is a resounding no, but personalizing CF by allowing myself to become acquainted with the stories of people who live with CF, parents with CF children and people who love CF patients has brought me hope. With every Instagram post I have seen, after searching the #65Roses hashtag along with several other CF-themed links, I have come to realize that this rare disease is not without its blessings. People in this community seem to continually radiate positivity and gratitude for each breath they are given. That is not to minimize the horrible side-effects and illnesses that my son could face, but it gives me a sense of peace. My son has inadvertently given my family the gift of realizing how precious and special every moment is, and for that, our lives will be fuller. Knowing how "loquacious" he already his, this kid is going to have much to say and share with this world, which leads me to believe that he will find a way to make this world a better place.

Do I wish that I could take away his CF before he begins to feel the effects? Of course. I would do anything to be able to make this a reality. Do I hope for a cure? Absolutely, and I do have tangible reasons to believe that it is coming. Am I grateful for the cards my family has been dealt? In a way, yes. Had I known that Josh and I were carriers for CF, I am certain we would not have intentionally had three children. He has completed our family in his own perfect way, and I will forever be grateful for all three of my tiny humans. Could I imagine my life without Jordan? No. The more his personality grows, the more apparent it is that he is a joyful and charismatic little person. He has illuminated my world, and I am excited to watch him continue to shine.

Let The Life Lessons Commence

This past Saturday, on a moderately hazy morning, the class of 2018 walked across the football field signifying their entry into adulthood. Many of them will pursue higher education, some of them will join the armed forces, and all of them have hopes for a bright future. “Real life” or life beyond their parents' homes is just beginning. The past 17 to 18 years have passed quickly; time always does.

As a parent, I am amazed at how much my own children have grown and changed in the past three and a half years. Their lives are just beginning, too, in a different sense. Their personalities are still forming, their understanding of the world is vastly and rapidly expanding with each day, and they are actually taking first steps and experiencing milestones at every turn.

Seven months ago, Jordan decided to make his presence known. Reflecting with several of my students who were in the senior speech class that sent me off to the hospital, we were all in such disbelief over how fast those months passed and how quickly the school calendar disappeared.

As a seasoned teacher, I can walk into a class, navigate the unexpected, and feel confident in the curriculum that I have created. While I am always adapting, rereading, relearning, and adjusting, it is a relief to have confidence in the classroom even when my mind is preoccupied. This year, life has taught me, however, that no matter how comfortable I feel, I will still be tested and challenged in new and unexpected ways.

For a majority of this school year, I have not felt like myself. I have struggled emotionally and at home, which has left me drained and some days heartbroken. While I believe I have done an okay job continuing with my daily tasks, my heart was heavy, and my mind often raced to the worst case scenario for Jordan and our family. Luckily, and perhaps unluckily, my nervous and anxious energy defaults into a smile and a need to accomplish tasks. My frenetic energy is calmed by moving, doing, reading, and grading. I am an optimist at my core, but there have been times this year that completing even the most mundane and routine daily activities were a struggle - especially during the winter months when Jordan's diagnosis was still fresh. As time has passed, these feelings of heaviness have been slowly lifted as new understanding and knowledge has allowed me to quell my fears.

Josh and I do not believe God chooses for His people to suffer or struggle. Those aspects of our world exist because our world is fallible; suffering is inevitable because we live in an imperfect world. Our faith, however, reminds us that no matter what path is placed before us, we can choose to be joyful. We can elect to navigate the rockiest of roads in ways that lead to fulfillment and meaning. On occasion, we have to force ourselves to choose happiness while other days, the days where giggles and art projects fill the house, the navigation of life's path seems a lot easier. Those carefree days are the days that make life so sweet and will make those tougher days less bleak.

About a week ago, Jordan had his monthly C.F. doctor appointment, which will now be every two months because he is doing so well, and our doctor celebrated and congratulated us for keeping Jordan happy and healthy (and strong enough to rip the paper off the doctor’s table). As a parent, keeping an infant happy and healthy is a victory no matter the circumstances. What we have come to realize about C.F. is that while he will experience complications that can be life-threatening, he will also live a more normal life than we ever expected. Yes, this disease is chronic, serious, and awful, but many other things in this world can be described in that manner. It has been a difficult journey to accept that C.F. is a part of our lives, but I have made peace with this diagnosis. All three of my children are beautifully made, loved, and will serve a purpose in this world. This is what my faith has taught me to believe.

Jordan at his seven month CF checkup

The TERROR (and Tearer) of Doctors' Paper

We will inevitably occupy hospital rooms and attend many doctor appointments in my household, but we are committed to laughing through those experiences. Will there come a day when the road gets rocky? Of course. Those days will come for us all. Will I still worry, cry, and experience anxiety? Of course, I'm a mom, but I will not allow these emotions to consume me.

This year, I have truly been schooled by life. I now more than ever understand that life is unpredictable. Each unexpected experience can grow and shape us into better people, and while that growing process is not without pain, there is beauty in imperfection. I have also learned that empathy is a life-giving tool. Not only do we as educators need to show empathy to our students and to each other, but we also need to learn to accept empathy from others. Walking with others, showing vulnerability, and embracing our emotions, even when we feel like they expose our weaknesses, are key to growing together. This year, I have had my grit and resilience skills sharpened. I have been challenged in more ways than one to be a better educator, mother, and person; and while I am glad to be closing the door on the 2017-18 school year, I am grateful for what this year has asked me to face.

As commencement celebrations continue to appear and fill our social media feeds and calendars, I am overjoyed with the milestones and successes that I witness my students current and past experience. I am proud of the young men and women they are becoming. As their parents must feel for them, I feel for my own children - hopeful, in awe of what has already passed, and excited about a future of possibilities. 

Each milestone is a blessing. With the closure of one chapter, a new one remains unwritten.

Join Team AJD!

Social and Emotional Learning and A Little Bit of Empathy

This year, I was fortunate enough to participate in a cohort of teachers from my community that focused on Trauma Training and Social and Emotional Learning. Taught by the NEA, this six-week course provided information on Adverse Childhood Experiences (ACEs), building resilience, and restorative practices among other topics. While I have always considered myself to be empathetic and relational with students, this experience has opened my eyes and challenged me to rethink my interactions with students - especially students who seem to be exhibiting stress, struggling with social and emotional issues, and/or are not completing tasks as assigned. In a world with infinite pressures, the obstacles and backstories that students face before entering the hallways of the high school in which I teach are often unknown, and their effects remain unseen.

All trauma is relative to the person experiencing said trauma. Every student and every person will struggle at times, which may lead him or her to carry out choices that may not add up. For example, a student may have a parent who is sick at home and feels overwhelmed with anxiety for said parent or has to take on more responsibilities to keep life functioning at home. Unfortunately, there are too many struggles in this world. Young people are learning to navigate the situations presented to them, while trying to attend classes, complete homework, participate in the school community, work toward pursue post-secondary educations, and determine the roles in society that they will obtain when they officially leave high school. With numerous demands pulling them in countless directions, of course, their level of stress and anxiety are high. Their pressures can seem insurmountable, which can cause students to shut down and leave them uncertain with how to cope. 

Redirecting my focus with students this year, I now stop and question what has caused them to act in the ways they are acting and assess their coping skills. Acknowledging and validating their feelings - no matter what they are experiencing - is a priority for me. When students feel validated, they are far more open to having conversations about their situations (and about the work that needs to be completed in class). After students feel supported, we can begin to discuss grit and build resilience, time-management, and other executive functioning skills. We all need to develop and continue to develop these skills in our lives. Promoting social and emotional skills is essential. When students understand how to face their obstacles, they will learn to problem-solve, critically think, and apply critical literacy skills to their lives. In addition, they will learn how to navigate the adult world and how to work toward making their dreams and goals realities. What I want most for my students mirrors what I want for my own children. I want my students to recognize their strengths, discover their passions, and pursue goals. As they work toward individual goals, I hope they learn to work hard and exhibit kindness to everyone they met. While I know this is idealistic, I do believe that emphasizing life skills, demonstrating empathy, and focusing on being the best teacher I can for my students can make a small but tangible difference. I do my part in hopes that maybe they will believe in themselves, known that someone cares, and want to work fervently for the destinations that will bring them joy. Happiness and contentment are attainable, and amazing occurrences can happen.

Team Jordan Update

I have been humbled by the love and support shown for sharing our experience with cystic fibrosis and Jordan's condition. I have been grappling with the meaning behind his diagnosis and what this means for our lives. Every doctor's appointment has been incredibly positive. The research that I continue to read (in small doses because my heart can only process so much in a given sitting) continues to provide me with reasons to hope. The CF Foundation is committed to finding a cure for CF. As a mom of a child with CF, I will be more than content with therapies and medicine that will allow Jordan to live a full life. We can work through this disorder together. While I am not a doctor, what I can glean from the research is that if the CF Foundation finds a cure for CF by cracking the genetic code, this research could mean hope for countless other people who suffer from genetic disorders. Could life become better for thousands of families? I hope for that.

I am a person of faith, and I do not believe that God wants his people to suffer. My heart is heavy for all people who face illness, poverty, depression, abuse, war, and every other hardship this world holds. There are innumerable obstacles placed before us in a given lifetime. What I do believe, however, is that we can choose to accept these challenges to create a more beautiful world in which to live. 

Today's sermon profoundly pointed out the beauty in our wounds - in the heartbreaks and aches that we have faced. Our scars, both physical and emotional, have shaped us into the people we are. They can be used to teach us and bring us closer together. My pastor used the analogy of Kintsugi, a Japanese art form in which artists take shattered pottery, reconstructs the pottery and fills the cracks and crevasses with gold dust - taking what was once broken and making it more marvelous than before. Whether it be my students and their struggles or my own struggles, perhaps this is what life is truly about. From our brokenness, we can work to fill in the cracks together. We can choose to give our lives meaning and beauty by filling it with empathy and love.

No matter what life has in store for us, I continue to believe there are blessings in the imperfections.

Team Jordan

Josh and I dreamed of having a family together since we were still teenagers ourselves. Each of us having only one sibling, to whom we are so fortunate to be close, we knew that ideally, we would have three children - fulfilling Josh’s lifelong dream of following the 90s Chicago Bulls franchise model by creating our own three-peat.  There is no greater gift a parent can give their children than a sibling. So why not have all three as closely together as possible? After years of struggling to become pregnant and dreaming of becoming parents, once Harper came, Willa easily followed 13 months later. In October this past year, the hopes of having a family of five so close in age finally came to fruition.

Jordan’s pregnancy was the exact opposite of Willa’s. Everything seemed so effortless with Willa that we thought Jordan’s pregnancy would follow suit. Unfortunately, six months of morning sickness, three cases of the stomach flu, and an incredibly painful vein condition made this pregnancy grueling and certainly solidified what we already knew – he would be the last chapter in the Sukow Sibling story.

Jordan’s birth was supposed to mark the end of our health concerns. Because of a variety of complications with his placement and my iron count, extra tests and appointments were made that all indicated how healthy and strong he appeared. Like Willa, Jordan was born a few weeks early, quickly – so quickly, in fact, I was escorted out of the school building by my remarkably kind and compassionate school nurse before the end of the school day. He was born two hours later at 3:33 PM. Passing all of his initial tests with flying colors, we were released from the hospital 27 hours after he was born – sent home to begin our lives with our family complete.

Approximately two weeks later, on Halloween just before Trick-Or-Treating was scheduled to begin and my mother to arrive, I received a somewhat frantic phone call from my children’s doctor stating that Jordan had failed his newborn screening test. The results indicated that he had cystic fibrosis, a disease we had heard about but did not fully understand. No one in my family has had any health complication, sans cancer well into their 80s. Besides anemia and scoliosis, both seemingly minor health issues that plague petite white females, I had no reason to be concerned about my health or the health of my children.

Of course, I took to Google to answer all of my questions about cystic fibrosis only to find that CF was a life-threatening disorder that historically caused infants to be labeled a failure to thrive and lead to extremely early deaths. Not knowing where to look and what information to trust, I spent the next 72 hours crying and staring at my seemingly perfect newborn son, fearing that someday too soon, I would be saying goodbye to this tiny human who I already loved so deeply.

As we all know - Don’t EVER Google medical information.

The past five months have been a whirlwind of medical appointments, tracking every ounce of food ingested by Jordan, and learning about cystic fibrosis. Since that initial Google search, I am so happy to say that everything I now know provides me with so much hope (and the calibrations on my Google searches related to CF are much more accurate and positive). Upon his initial diagnosis, the amazing specialist that Jordan frequents once a month reassured us that the internet has not caught up with the advancements that have occurred with this disorder. We can expect Jordan’s life to be full and relatively normal – with the caveat that we will have to work to keep him healthy.

CF primarily affects Jordan’s pancreas and lungs, which prevents him from producing enzymes that break down his food naturally and lead to mucus building in his lungs. From day 15 of his life for the foreseeable future, Jordan must consume medicine that allows him to absorb nutrients from his food – but will allow him to thrive. Thankfully, Jordan is in the 70-80% for length each time he is measured. He has fluctuated weight-wise, staying closer to the 33% range. Tall and thin –  a description that is similar to my father, who Jordan seems to resemble the greatest at this point in his especially young life. He is unbelievably strong, impressing doctors with his stats, and charming every person he meets.

My reoccurring fear and anxiety center around the thought that Jordan will struggle. He will struggle to breathe; he will be in pain every time he digests his food. The unknown is the most frightening part of this disorder or actually, any aspect of parenting. I must admit, I have cried more in the last five months than I have ever cried, and I’m a sensitive soul – so that’s saying quite a bit. Again, I return to the notion that once he was born, life was supposed to become easier. He’s an infant, I am the parent, and if anyone should experience pain, it should be me. Discovering this recessive disorder in our family lineage was shocking and certainly was one of the phone calls that no one expects, and every parent dreads receiving. 

Today, I am so blessed to have a doctor and specialist team who are relentlessly positive, who view Jordan as part of their extended family, and who continue to fight for a cure – or at least medicine that could potentially counteract the gene mutations that prevent his body from functioning normally. Ironically enough, while only 35,000 people live with CF in the United States, my division leader and friend’s son also has cystic fibrosis. Sitting just two desks away, I am blessed with the incredible ally and support system as a mom with a CF kid, and even better, Jordan has a superhero named AJ in his life who he can look up to and who can help guide him on this journey. While I do not wish this disorder or any ailment on anyone, as a mom, I could not be more grateful for this support system to help us understand and fight cystic fibrosis together.

The more I learn about CF, the more encouraged I am that Jordan’s life will be a full and joyful one. The science behind curing CF is on the brink of exciting discoveries. Josh asked our doctor at one of our recent appointments how all of this new information and treatments have been made possible. What has surprised us about this disorder is the Cystic Fibrosis Foundation itself. This organization is absolutely incredible in how well organized they are and how progressive they have been regarding finding a cure. The members of the foundation are fighting for a cure for every gene mutation that causes CF; they are advocating for every person who suffers from this disorder. Their fight is now our fight, too. This year, we are joining Team AJ (now Team AJD) to learn more about CF, how we can fight for a cure, and how we can help make AJ’s, Jordan’s, and anyone who has CF’s lives better.

Join Team AJD!

I am still learning and realizing that there is a great deal that I do not understand about cystic fibrosis. What I do know is that my five-month-old son is the most smiley and strongest baby that I have ever met. His joyful nature has given me so much to hope for and provided so much comfort in one of the most uncertain few months of my life. He will live a meaningful life, and he will have quite a platform on which to launch his public speaking career. Watch out for the special occasion speech to hit the speech team circuit in 2033 entitled “Life with CF,” “C is for Charming,” or “Putting the FUN into CF.” Josh tried to convince me to approve “F… CF,” but as the head coach in this duo pair, I put the kibosh on that fairly quickly. Needless to say, we’re still working on the title. Nevertheless, we are ready to go full force on fighting this disorder, and so blessed to have a team of people to help us understand, process, and travel with on this imperfect but beautiful journey.

I am grateful that I get to hold this stinker, love him, and share him with my family and friends. My world is better because he is in it. I am now ready to fight to make his world better, too.