An Open Letter to Parents of Children with Cystic Fibrosis
A columnist with Cystic Fibrosis News Today recently opened up about what his life with cystic fibrosis has been like. He is a deaf 24-year-old named Brad Dell, and he loves everything about his life. Instead of letting the disease ruin his life, he has chosen to be thankful for everything that he has, and every moment that he has. In an open letter to parents with children who have cystic fibrosis, Dell shatters the belief that those living with cystic fibrosis are doomed to live terrible lives.
In the last twenty years alone, research and treatment of cystic fibrosis have made massive leaps. Individuals born after the turn of the century have enjoyed medicines and therapies designed to keep the disease from progressing, and the lifespan of these individuals has skyrocketed. When the disease was first identified, the life expectancy of a child with cystic fibrosis was under the age of 6. Now, the median age of survival is approximately 40, with new breakthroughs and treatments on the horizon.
If you are a parent of a child with cystic fibrosis, Dell encourages you to embrace the hope and positivity, while taking care of yourself and your child with love. Cystic fibrosis is no longer a death sentence, and your child needs their parent to make them feel strong and safe. Although there is currently no cure for cystic fibrosis, keeping your child healthy and strong gives them a chance every day to receive it when it comes.
Expect longer lifespans
When Dell was a baby, he was malnourished and cried constantly. His mother did not know what to do. When the diagnose came, it was unimaginably difficult to hear. She had recently left a biology class in tears after learning the life expectancy of a child with cystic fibrosis. All she could think about was her baby. She was worried about everything from the baby’s survival, to whether or not the baby would ever have a good life.
Dell’s childhood was difficult, and he makes no efforts to hide that fact in his open letter. He says that “there will be sleepless nights of weeping for you and your child.” This doesn’t mean that he had a bad childhood, or a bad start on life. Though he acknowledges that his life has been more difficult in some ways than a healthy person’s might be, he refuses to allow those moments of weeping to define his memories. He remembers “times of rejoicing in victories,” and the moments where life is good.
Life-threatening illnesses do not have to become a person’s identity. Dell recounts a conversation with one of his history professors, who had cancer. The professor was more worried about Dell’s cystic fibrosis than he was about his own cancer, and said that it was “a shame, that someone so young should be so sick.” The two of them were chatting on a balcony, and Dell notes with irony that the professor was smoking a cigarette at the time.
What Dell took away from that conversation came to define him as someone who would become a stunning beacon of hope and optimism for those facing a progressive, burdensome genetic disorder. He left the balcony thinking about all that he had to be thankful for: “love, a home in the paradise of Hawaii, a job I was passionate about, a wealth of hilarious life stories, and a longer lifespan than patients born before my time.”
In Dell’s lifetime, and for all born near or after the turn of the century, cystic fibrosis research caused a quadrupling of median life expectancy in the United States. The discovery of a malfunctioning gene—the cystic fibrosis transmembrane conductance regulator (CFTR) gene—made it possible for doctors to combat the disease before symptoms arose, and directed research into treating the root of the problem. Life expectancy went from less than 10 years to approximately 40 in the span of 40 years.
Try to stay optimistic
Following the conversation with his history professor, Dell found a renewed sense of optimism and joy in life. He says: “I didn’t feel sorry for myself. I still don’t. Parent, I have cystic fibrosis, and I love my life.” The key is in thankfulness for life at all, and in hope for a future in which cystic fibrosis might be a curable disorder. Dell is constantly looking forward to new drug developments, and claims that with all of the research being done in treating the disease, something is bound to work.
In the meantime, he says that parents should maintain optimistic goals and raise their children up to be fully developed, loving, and wise human beings. A child with cystic fibrosis today is still going to grow up to develop their own system of values, to make their own memories, to help others, to pursue their interests, and to find love. If a cure is discovered in the next ten, twenty, or thirty years, they will continue to live as the people that they have become.
Dell notes that most people he’s met with cystic fibrosis are among the most optimistic people that he has ever met, and wise beyond their years. Living with cystic fibrosis is an everyday struggle, but overcoming that struggle every day leads to a strong, victorious, and amazing person. Believing that that there will be nothing but grief in a person’s life because of their disease is foolish. Dell says that “there are far too many variables to account for. Choose positivity.”
Find peace within the community
One major area that Dell addresses in his letter to parents is their own personal wellbeing. He notes that “even more caregiver parents suffer from anxiety than patients with CF.” Taking care of yourself as a parent ensures that you are able to be there and be supportive of your child through what they are going through. You want to take care of them, not have them take care of you.
Dell’s remedy for anxiety is: “don’t look ahead if you aren’t doing so optimistically.” Anxiety comes from being afraid of what you can’t see, of what might be around the corner, of everything and anything that you cannot control. Dell urges parents to focus on the moment, focus on what you can do now for your child. With each challenge and trial that comes, you and your child both will be given the opportunity to grow, adapt, and overcome.
In the comments section of his column, a reader told Dell that her son had once told her that he was lucky to have a great life. At the time, the mother believed that her son was just saying that to make her feel better, but after reading Dell’s column, she came to believe that he had been telling the truth. Dell urges parents to find a community of positive-minded parents who are going through the same thing, and this is just one example of how a little community can go a long way in strengthening a family or support group.
Dell reminds parents and everyone who knows someone with cystic fibrosis that no matter what a person’s health or age, life can be enjoyed and the most can be made of it. He has been in a relationship for six years, has a career path and goals, and has travelled across the United States to sightsee and wonder at the beauty of the natural world.
We are all invited to take part in the narrative of the living, and Dell chooses to make the most of his by pursuing everything he loves, casting off the bad, and forging ahead to give others the same chances that he has been given. In 2017, he received a lung transplant that will vastly extend his lifespan and quality of life. He has always been, and remains, thankful for every opportunity that comes his way. He concludes his letter by saying: “I have cystic fibrosis. And I love my life.”
References
https://www.cff.org/CF-Community-Blog/Posts/2015/There-Is-No-Health-Without-Mental-Health/
