In the 45 years since my diagnosis at 4 years old, I have learned that anyone who navigates life with cystic fibrosis has memories of dealing with serious health issues. First, there is taking all those pills, or wondering if you might faint while doing PFTs, or sitting in clinic rooms hoping the appointment would last so long you would get out of school that day! Then, there are more difficult health issues, like coughing up blood, knowing friends are going to parties while you look out the hospital room window, and wondering how long you will be in the world. CF memories can be filled with medical trauma and are rarely easy. Still, they became even more challenging for me to process when I became a mother; once my children arrived, my health was not just about me, it was also about them.
So, while I avoided being hospitalized for lung exacerbations until my late teens, and only had to go in a few times as a young adult, my health significantly declined in my early 40s after my children were born. Intellectually, I knew that I ideally needed to take care of myself to be fully present for my family. But my reality as a mother was that my children's needs often came before my own. In addition, I have a bit of a stubborn streak, which created a rich environment for denial to exist. So, I prioritized my children and my work over my health. Unfortunately, my lack of attention to my health contributed to my frequent stays in the hospital. In fact, I welcomed the new year several years in a row alone in a hospital room.
The first time I spent the holidays in the hospital, I looked into the back seat of our minivan to see the sweet faces of my young daughter, twin sons, and baby boy trying to be brave. It was a couple of days after Christmas, and we were heading to the hospital for me to spend two weeks at the "CF spa" (better known as a clean-out). We decided that my husband, Robert, would drop me off at the hospital door to make it seem like I was going on a trip. We were trying to normalize that I would be away during the holidays.
I kissed my children, who had tears in their eyes, and took a deep breath and squared my shoulders. I was trying to show my children that I would be okay, hoping to diminish their fears and boost our sense that all would be well.
That moment is seared into my memory.
These were not easy times. It took a lot of strength and resilience to navigate. I am thankful that Robert and I were intentional about deciding to have children and how we would teach them about the realities of CF. We needed to be honest while at the same time ensuring their sense of security. I have an adventurous spirit, so when they were little, we decided it would be best to make it an adventure for the kids when I needed to be in the hospital. When I was admitted, they would visit with grandparents and extended family. Sometimes they would drive to New Jersey, Alabama, or stay with their grandparents down the street.
They would typically visit family the first week of my hospital stay because it kept them occupied and focused on things other than my absence. Plus, I was exhausted and did not want visitors. Their travel gave me time to genuinely rest. This plan also supported Robert because he had others to help him with our babies. He was torn between caring for the children and wanting to visit and support me. However, despite having help, my absence required him to function as a single parent. Robert had to navigate getting the children to and from school, prepare every meal, maintain his work, handle bedtimes, and provide emotional support.
We prioritized listening carefully when the kids wanted to talk and gave them grace when they acted out. Young children do not often use words to describe what they need. We had to pay closer attention to their behaviors to understand their feelings. We would inform their teachers that I was in the hospital. We asked them to communicate more with us and provide extra hugs and love if the children were more emotional or easily frustrated.
We learned to be better about asking for what we needed from each other and those around us rather than expecting others to be mind readers. These times taught us humility and the true meaning of "it takes a village."
Once the kids returned from their visits, Robert would bring them to see me in the hospital for about an hour every other day. They would watch the nurses check my vitals and respiratory therapists do my treatments, and they would do their best to listen when doctors arrived. We taught them that my body worked differently and needed extra care sometimes. They were required to grow up a little faster than their peers, but it taught them empathy and to be understanding of differences in people.
The children also learned to make the best of things. They took "astronaut rides" up and down on the hospital bed, ate the extra pudding I ordered, took turns on the exercise bike, and flipped through all the TV channels. We worked to make it fun while teaching them that time is precious.
Fortunately, time and again, I have been able to return home with my arms open wide to embrace my children. The feeling and memories of having all four of them snuggle with me on the couch are as powerful as saying goodbye in the car that day many years ago.
Thankfully, my health has improved over the last several years due to Trikafta®, and I am spending less time in the hospital. My children are older and more self-sufficient. They can now make meals, stay home alone, and use words to tell us what they need! However, we are starting conversations about getting evaluated for a lung transplant. The next phase of life has begun. New questions will arise, challenges will be faced, mistakes will happen, and new memories will be made. Nevertheless, I am confident we will face that journey together with squared shoulders, deep breaths, and recognition of the moment!
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