By Carey Christensen
Mother of Cystic Fibrosis Patient
My first step into Primary Children’s Hospital was in the summer of 2000. My son Liam was just a few months old, and we were referred to the craniofacial team. Liam was born with a cleft (soft) palate, and we were told he would need to have it surgically repaired when he was about 9 months old. After speaking with specialists and other parents whose children had cleft palates, we assumed that we’d be “golden” after a simple surgery and maybe some speech therapy early on. In November of that same year, Liam had the surgery, and everything went smoothly. It was a bumpy year adjusting to this and worrying about our son. We were starting to see the light at the end of the tunnel.
However, something told my husband and me from the very beginning that there was more than a cleft palate that needed attention. When Liam was about 3 months old, I’d kiss his little nose and noticed that he tasted unbelievably salty. In fact, there were times that I could even see little salt crystals on his nose. After some research, I learned that salty skin was a symptom of a disease called cystic fibrosis. To ease my worry, I took him to our pediatrician at the time. He immediately calmed my fears and told us that there were no other symptoms that pointed to CF. Over the next few months he was showing more symptoms consistent with CF, and I took Liam to five or six different pediatricians to get some answers. Finally, after he had a persistent cough, had lost a significant amount of weight, and was sleeping most of the day and night, another doctor suggested he be tested for cystic fibrosis at Primary’s Children’s. I drove him down from North Ogden the next day for a simple sweat test. Our doctor called us that night to inform us that our little boy had indeed tested positive for the disease. I had never felt such devastation. Up to this point, (to protect myself from too much worry), I had only done enough reading to know that CF meant a limited life expectancy, a lot of hospitalizations, and a median age of survival in the 20’s.
A few days before Liam’s first birthday and the day after his diagnosis, he became a patient at Primary Children’s cystic fibrosis clinic under the direction of Dr. Barbara Chatfield. She visited with us and tried to update us on the latest research. This gave us more hope than we felt the day before, but we were still in shock and disbelief. The following week, my husband and I took Liam back to visit with the entire CF team where we were first introduced to Diane Haberman, the CF social worker. Looking back, I recognize that I was in complete survival mode those first few months. I was so focused on keeping my son’s medication regimen straight, his chest physical therapy schedule on time, and avoiding every germ possible (to a ridiculous extreme), that I wasn’t allowing myself to really feel any of the grief I needed to feel in order to come to terms with the diagnosis.
Maybe this was why I felt uncomfortable at first when Diane would visit with us at Liam’s appointments. I didn’t want to even consider admitting that I might not be okay….that I hadn’t grasped what CF really meant…that I was functioning on the outside but falling apart inside. Liam was counting on me, and I had to have absolutely everything in order. Everything else took a back seat, and I prided myself on hypervigilance with his care. I read up on the latest research, followed multiple CF online message boards, was religious about treatments and medications, and headed up a big team for the Great Strides walk. When my husband and I faced a series of stressors about 6 months later, I crashed. I continued to take care of my son but wasn’t functioning in any other capacity and started to feel out of control and scared.
Upon realizing I needed help, Diane was the first person I called. During our previous interactions, I may not have shared much, but I could tell that she was a safe person to tell, “I’m struggling with this. Whatever I’m doing to cope with this diagnosis isn’t helping. In fact, it’s getting worse and I don’t know what to do.” Diane normalized my emotions and listened as I tried to put my confusion into words. She encouraged me to talk with a professional and gave me the name of a someone who practiced close to my home. I will always be grateful for this recommendation and for Diane listening to me fall apart on the phone that day.
Over the next several years, my husband and I continued to bring Liam to Primary Children’s for his quarterly visits, and we would touch base with Diane each time. She continued to be a safe person to whom we could ask difficult questions. By doing this, we started to realize that we needed to think outside of the box. Our Type A family previously had a “plan” regarding what life would look like before CF came our way. She helped us understand that we may need to consider other avenues and pull from different resources, especially when finances were strained and we felt like we were juggling too many balls at once. When I voiced that I may need a little something “for me…away from home,” Diane helped me realize that this was ok, perhaps even necessary. I began taking classes part time at Utah State University and ended up graduating with an undergraduate degree in psychology years later. Several years after this, Diane wrote a letter of recommendation when I applied to the Marriage and Family Therapy master’s program at UNLV and was a great cheerleader along the way. She helped me understand that taking care of myself actually helped me be a better partner to my husband and mother to my boys.
In 2005, our family moved to Las Vegas, Nevada. We have continued to bring Liam to Primary Children’s each quarter. Liam has had two surgeries at Primary Children’s since his CF diagnosis (both in 2012). Overall, his health is good and our outlook is positive. We feel such gratitude toward our CF team. But, this doesn’t mean we don’t have days that are difficult – - that we don’t feel the fear of “what if.”
Diane has been our social worker for thirteen years now. As our family has transitioned through various phases and faced different challenges associated with this illness, she has continued to be a great source of support and encouragement for us. I have felt that I can voice any fear or concern to her without facing judgment. Ultimately, I know that I am never alone in this experience. There have been silver linings and new perspectives, but we still experience fear and uncertainty. And in these moments, Diane continues to be a safe place for us to fall.