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.