Courtney Solomon

I was diagnosed with cystic fibrosis when I was 6 months old. After a hospital admission for pneumonia, failure to thrive, and a persistent mother advocating for her infant daughter that something was not right for weeks and months, I was finally diagnosed with CF. Once I started taking enzymes and doing nebulizers and chest physical therapy (AKA my mom and dad spending hours a day providing chest airway clearance for me), I began to grow and my family learned to live a “new normal” life. My brother Taylor was born 2 and a half year later. He was also diagnosed with CF but was able to start on medication much sooner that I because they tested him early on. 

Taylor and I had an amazing childhood that definitely looked normal from the outside. We have and still have two very dedicated parents that made sure we had access to the many maintenance medications required to keep a person with CF healthy. Truthfully, we had it better than most.  We played sports, went to school and church, had sleepovers, and took family vacations. We are luckier than many children and feel so blessed to have the upbringing we did. What was not normal was the dozens of pills we had to take each day, the hours of nebulizer and breathing treatments, and frequent visits to the doctor to just maintain our health and ward off the effects of this lifelong chronic disease. 

The looming idea of the possibility of feeding tubes to help us gain weight, hospital admissions for IV antibiotics, and a shortened life expectancy was always in the back of my mind. Whether it was naivety or a trust in God’s provision for my life from a young age (or most likely both), I was determined to live a normal life like my friends. I had a curiosity about this disease, a disease that controlled my life in many ways. I learned all that I could from books and the internet. Somehow being faced with the cold hard facts of this disease, some of which my parents said they were not going to discuss with me until I was grown up, did not sway my decision to move forward in life and work towards my goals. 

My parents are the best advocates for us and were relentless in their efforts to raise awareness of CF as well as enlisting others to be apart of helping to cure CF. I know I didn’t appreciate their efforts as much as I should have when I was younger. As a parent, I now know how vulnerable it can feel to ask your friends, family, coworkers, and neighbors to support someone and something you care so much about. It is so tricky even now to talk about CF or donations because there are so many causes worthy of our time and money. I feel so blessed to be able to witness the medical advancements made in my lifetime. The medication Trikafta has been such a game changer and I’m thankful for all the drugs that came before it to keep my lungs as healthy as they could be before Trikafta was  available. Trikafta helped me be healthy enough to get pregnant and carry a sweet little girl in my belly for 9 months.

Our sweet Emerson was born 2 and a half years ago. We knew she would have a high risk of having CF (50/50) but also knew she was a miracle baby born out of many years of prayers on my behalf. When she was first born, she was so healthy! My parents just knew she didn’t have CF because she was gaining weight so well and seemed to be digesting so well too. When we got the results of the universal blood test taken at birth we were called  to schedule an appointment with the pediatric CF center in Chattanooga. We still weren’t sure if she actually had CF or if she was just a carrier (like Jordan). The doctor told us she had two CF genes and fortunately she would qualify for Trikafta once it was approved for children. I was devastated and relieved all at once. Devastated that she had CF and the life long implications of this disease. Relieved she had the “good genes” that would let her qualify for Trikafta. I didn’t shed a tear in that clinic. I didn’t want the team to question why I would even try to have a child when they had such a high risk of being born with CF. I wanted them to see a strong and capable mother who was going to love this brave girl and who had lived through what they only knew from textbooks (and dedicating their whole career to this disease- I was going through a lot, OK??!) I was there to show them I survived the countless life expectancies the medical community predicted. I thought I knew more than they did and I definitely had a leg up from anyone who is blindsided from a child’s diagnosis of CF. I wanted to be brave for them, for Emerson, for Jordan, and for our family. When we got home, we laid in bed and cried. And then, we got to work. 

Caring for an infant is hard. I had Emerson 2 weeks before the diagnosis was given. I was still adjusting to everything that newborn life throws at you. After that appointment, we began her medication and chest physical therapy routine. Giving an infant baby applesauce and enzymes with every feeding was a battle. She hated it. She would scream and cry and spit. I couldn’t blame her. But we didn’t have a choice- it’s what she needed to survive. On the other hand, the chest PT wasn’t too bad and actually put her to sleep. The pressure of making sure she gained weight was a lot and all too familiar. I had felt that pressure my whole life to gain wait and that looming fear of her needing possibly needing a feeding tube threatened my sanity. I often felt like (and still feel at times) her growth and weight was a reflection of my ability to take care of her. I read all the books on feeding, sleeping, and taking care of a baby. I had to do this right. 

Once my maternity leave was up, we decided to have her go to daycare. She was healthy and happy and it seemed like the next step. Unfortunately she got sick, as kids always do in this setting. But when she got sick, she got sick big time and landed in the hospital. She was tested for every virus under the sun. She had a combination of 2 common cold viruses. It made her have trouble breathing and she needed to go to the hospital for more breathing treatments and IV antibiotics. After about a week she was feeling much better. Unfortunately she got COVID the following month and back to the hospital we went. I can remember feeling so devastated that I couldn’t keep her healthy and worried if this was what our future was. Many kids with CF spend a lot of time in the hospital and I was fortunate enough to only go 2 times- once at 2 months old and once at 19 years old. It was a dark time for me mentally and emotionally.  

We kept her home and away from other children so she wouldn’t pick up any more viruses. Fortunately, she stayed healthy and got stronger. In the back of my mind I kept thinking, “We just have to make it to 2 so she can be on Trikafta and live a more normal life.” After her first birthday, I was so relieved that we had made it halfway there. She wasn’t a tiny fragile baby anymore. She was a walking and babbling and active little girl! 

Over the course of her second year of life, we began to take more “risks.” Like letting her play with other kids outside and at church. She got sick occasionally but her body was fighting it off better. Plus we had a vest machine to do her CPT and daily nebulizers to keep her healthy. Having community for her and me has been so life giving and I’m so thankful she has grown into such a brave and resilient toddler. 

A little after she turned two, she started taking Trikafta. Since she was relatively heathy before Trikafta (AKA not coughing on a daily basis, steadily gaining weight, and not getting CF exacerbations), we have not seen a huge transformation in her health. I think back to before and after I started Trikafta four years ago when I was 28. It was a huge transformation but I had accrued 28 years of damage to my lungs by the time I began taking it. We are so thankful she was able to start this medication so early in her life to help prevent damage and keep her healthier longer. We are hopeful that she will live a more “normal” life- without as many medications or the fear of a much shortened life expectancy. 

A friend once asked me if I will grieve for my own childhood as I watch Emerson grow up and see the battles she faces of living with CF. Will I grieve for what I had to go through? Will I grieve for the daily grind of treatments and routines to be able to breathe and digest food normally? Will I grieve for the experiences I missed out on as a little girl? I had never thought of that before. But as I have sat and thought about that for the last couple of months, I think I have my answer. I hope I do. I hope I get to grieve for my own childhood while watching my smart, funny, beautiful, and brave daughter navigate this new generation of living with CF and have a better life than I did.  This generation is full of even more hope of a healthy happy future. One whose life expectancy is not just to make it through elementary school, through the teenage years, or even to early adulthood. Since she is able to be in Trikafta for such a young age, the current life expectancy is in the sixties or even eighties according to different studies. I hope the prayers for health and the faithfulness of God’s goodness and provision in my own life is reflected in hers. I hope she grows up surrounded by people who are for her. Who advocate for her. Who stand up for her. Who support her. 

We would love for you to support us this year at the Cystic Fibrosis Foundation’s Great Strides Walk in Chattanooga, TN. This year, we will be walking for a cure at the Tennessee Riverpark in May 5, 2024 at 1:00 PM. If you would like to join our team to walk, we would love to see you there! If you would like to support our team through a donation, we are so thankful for your generosity!We are truly so thankful for the support and opportunity to make CF stand for Cure Found!