A Letter to CF Parents
Dear parent,
I know you’re afraid. My parents were afraid, too. My mom left a college biology class crying; the lesson on genetics included the life expectancy of a child with cystic fibrosis. There’s an old home video of her talking to Baby Bradley before I was diagnosed. I was malnourished and couldn’t stop crying. She told me she was worried.
She probably was wondering if my whole life would be as tearful as my infancy. She may have wondered if I would hate my life. Maybe you wonder the same about your child.
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I once stood on a balcony with my history professor and chatted about my disease with him. He had cancer, but was more worried about me than himself. (Ironically, he was smoking a cigarette at the time.) He took a long drag, looked me up and down, and with squinted eyes he said, “What a shame, that someone so young should be so sick.”
I left that balcony reflecting on what I had: 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.
I didn’t feel sorry for myself. I still don’t. Parent, I have cystic fibrosis and I love my life.
Yes, there will be sleepless nights of weeping for you and your child. But there also will be times of rejoicing in victories. Perhaps, there will be a time you can celebrate a cure.
One day, this all could be just a bad memory. Be excited for the newest drug developments. Don’t be afraid to be hopeful. There are myriad major game-changing drugs in development. Something will work.
Your child could grow up to be cured while retaining all the lessons they’ve learned, and all the values they’ve picked up over their years of fighting. People with CF are some of the toughest, most optimistic people I’ve met — the children and adults. They often are wise beyond their years and have so much potential. We struggle, but we come out strong.
Take care of yourself, too. The struggle a parent or guardian undergoes to keep their child safe is under-appreciated. Even more CF caregiver parents suffer from anxiety than patients with CF.
Don’t look too far ahead if you aren’t doing so optimistically. Focus on the now. Focus on loving your child where they are, rather than worrying about where they are going.
Create a bond between you and your child that cannot be broken by the medical trials you endure. Be a team. Celebrate with your child when they want to celebrate, and mourn with them when they want to mourn. Take time to ask them how they are doing and how you can help. Advocate for them, take their perspective to heart, and strive to be someone they can trust.
Talk to patients and parents who are fighting and hopeful. Ignore the pessimistic, jaded talk. Don’t read the sad stories and think the same will happen to your child. We all are different, there are far too many variables to account for. Choose positivity.
Your child will have fun and laughter; they might find love and passions. They might have a family, become master musicians or veterinarians, run your business one day, or have an unquenchable thirst for learning. Maybe they’ll even write about how much they love their life one day.
I’m sitting across from my girlfriend of six years, dreaming of marriage and planning career goals. I’m on a road trip across the Southwest. I’ve seen some of the most awe-inspiring sights in the past few days: Massive canyons that remind me of how small my problems are and how much there is to life outside of the hospital. The sky is breathtakingly beautiful tonight.
I have cystic fibrosis. And I love my life.
***
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
michelle
Ahhhhh I LOVE THIS thank you
Noel
Thank you so much for this!
Karen Fisher
You sound just like my son... He once said to me I am lucky I have a great life.... I thought that maybe he was saying it for my benefit but having read this maybe not... Thank you X
Grace
I am a parent to a 14 month old CF sufferer and I REALLY needed to read this. Thank you so much.
Sam
My son is 19 loving life in love part time job
Makes everyone laugh
Lynda
Beautifully written from a beautiful soul💜 may you see many beautiful things on your journey.
Kimberly Houston
I am a mother to two girls with CF, ages 6 and 2. Your words are so perfect and such a gift to me. My heart echos so much of what you said. I often feel that sympathy from others as well and don't want them feeling sorry for me, but would rather them know how grateful I am for this beautiful life I love. To hear that you are the one living with CF and also feel that way brings me comfort. I pray that my girls will be able to stand where you are one day and feel the same love for life that you do. And that I will always model that positive attitude for them. Thank you so much for sharing! I know your mom must be so proud. 😉
Ebony
My son IS 4 months old & has CF. I love this and needed to read this so thank you so much.
Carmel
I'm a mum and my son was born cystic fibrosis,you inspire me so much,what a beautiful way you write about your life.Life is great with my son who just turned a teen,going into secondary school.I belief in life and some day there will be a cure for all cf patients.
Tim Bossie
Thank you for the wonderful comment! We at CFNews are hoping that your son continues to do well and thrive!
Mary Powell
Brad, this is a great letter! CF seems to develop both anxiety and resilience in its CF patients and their parents/siblings. How kind of you to offer a balanced view! My Mom would have loved reading it ... especially after my sister Barb died from CF complications at 18.5 years.
CF invites reality ... it says that the emperor really has no clothes on. Dealing with reality is a shared, learned experience ... a journey. I also have CF, and before my dbl lung transplant in October 1994, I'd already been hospitalized more than a year.
Before and after the lung transplant, I was expected to die ... but some outcomes are hard to predict. Every day is a gift, even those in ICU settings. I've had many marvelous angels who took time to help me, and talk/laugh a little. I've got a fabulous husband with an awesome sense of humor. I have siblings who show up, friends who listen, work I enjoy, absorbing hobbies and a desire to try almost anything.
It sounds idyllic, doesn't it? Besides the lung tx, I needed a kidney tx about 10 yrs later ... and a friend offered me one of hers. I learned to pay attention to my sinuses ... had 3 sinus surgeries. I had stage zero pancreatic cancer ... perforation of my colon ... I don't absorb iron from food due to the pancreas surgery ... my veins are scarred, so I have my 3rd port. CF-related diabetes is much simpler than life without a pancreas. I'm presently investigating the state of my liver, based on an abdominal CT last fall. Life ALWAYS has something to inspire angst/anxiety/depression/etc.
But we are given compensations too ... I work full-time as an RF engineer, assessing the likelihood of interference to weather satellites. Went to Geneva, Switzerland twice last year for ITU meetings on that subject. There wasn't time to play tourist, but each morning I loved viewing the mountains surrounding Geneva, and the beautiful sky.
I am 56 years old ... when I was young, Barb & I carried CF pamphlets to our teachers that listed our life expectancy as 'preschool'. Back then there were no lung transplants, or aminoglycoside antibiotics, or Pulmozyme, or hypertonic saline. But we got up each day, and did our best for that day. And we thanked God for all our blessings. Gratitude helps to imbue happiness.
Mutation-wise, I have one delta F508 mutation, and one unknown. I was diagnosed a few months after birth.
Kathy Hardy
I have 8 children. The second, third and fourth have CF. We have received harsh judgment from many, many people over the years for having more children after the first diagnosis. But we believe that God intended for us to have each of the children we have. They are each a blessing to us and to the world. Our oldest son with CF passed away almost 3 years ago. If not for our faith in God and His love and grace to us and our son, we would not have survived his passing. But God is good. He sustained us through that difficult time and every day since. The other two with CF spend a LOT of time each day maintaining their health. But they also have active lives, pursuing interests and giving to our community, church and to the world. Part of my therapy is writing. I have written two books that have helped many people.
Jennifer Truesdell
My daughter was very frail and sick when she was born! I had many of these thoughts as a parent of a child with cystic fibrosis. Unlike the gentleman in this article my daughter never stopped being angry or pessimistic about having CF until about 17 years of age. She was angry that she never knew what it was like to not take pills, do treatments and spend countless days in the hospital. I spent many years sowing positivity into her until one day a few years ago so began to cry and apologize for her ungratefulness! She said thank you to me for never giving up on her and for pushing her everyday to do her treatments and take her pills. I had to be strong for many years and not let my daughter see my weaknesses related to her disease! She also conveyed how grateful she was to have family and doctors that only wanted the best for her and that she wanted to take advantage of these things and begin to live happy! She is turning 20 tomorrow and now has CFRD, liver disease and an enlarged spleen all related to CF but she is so much more than all of that! She is an amazing young woman who is intelligent, beautiful and has so many hopes and dreams! She has applied to a nursing program with every semester on the Presidents list! She will be an amazing nurse, get married one day and I pray she will have children! This article is right about one thing...people with CF are different and comparison is the stealer of joy!
Anne
My 21 year old daughter has CF. She has never really taken care of herself but when she was young I constantly re minded her which caused a lot of screaming and tears. Now as an adult this has continued but I should back off. She’s old enough to know what she has to do. She has become angry and cold especially towards me. I feel completely responsible for making her this way. Every day I give out to her for not doing her nebulisers physio forgetting her Orkambi not going to an appointment to start Kaftrio etc etc. It has broken our relationship and I am heartbroken. I have spoken to psychologist and he says to step back and let her take responsibility. One week later and she’s coughing so badly but not clearing it. I’m not going to say anything but the last time she did this her lung function dropped to 23%. Luckily she got it back up to 60% but she can’t keep doing this and I know by her she’s struggling again. My main point is though as a parent you have to weigh it up. I feel I’ve created this angry sad daughter through years of nagging and upset. I wish I had never got into this cycle but I couldn’t help myself as I worried so much about her. . It hasn’t been good for her nor me.
Jake marshal
My 14 month old daughter has cf..our nurses told us she cannot be around a fish tanks. Does this mean things like seaworld are off limits as im worried she will hate me for stopping her having certain life experiences that she deserves. Any help would be greatly appreciated.
Thankyou.