I have amazing news! Someone in my community, a man I’ve never met, sought me out recently. He wanted to share some incredible information he learned...
He knows the answer to preventing and curing Cystic Fibrosis!
This man proceeded to enthusiastically tell me about a book I must read, written by a veterinarian turned naturopathist. (Naturopathy is a system of therapy and treatment which relies exclusively on natural remedies.) This doctor, after researching and studying apes came to his hypothesis that CF was preventable, could be cured in early stages, and be managed well enough by taking a plant-based supplement. Mind blown!
And here, all this time, I’ve been compelling my two precious sons with Cystic Fibrosis, to spend hours a day attached to an airway clearance machine and nebulizer, taking countless pills, antibiotics, steroids, sinus treatments, and making numerous visits to the clinic and hospital. They could have been playing outside more or sleeping in! My boys will be ecstatic to know that all they really need is a supplement. And to think, our Geneticist, Pulmonologist, Ear, Nose and Throat specialists, GI doctor, Respiratory Therapists, Nutritionist, and Endocrinologist, with their years of schooling and experience were wrong all this time. I wonder if they know that CF has been cured by a veterinarian?
I hope you can detect the sarcasm in my words. Please understand, I have a deep respect for veterinarians, and I love nature, but… this is not okay.
Salt lamps are advertised to improve air quality, thus making it easier to sleep, taming allergies and asthma.
Maybe you’re reading this, just as astonished as I felt. You need to know, it's not the first time I’ve been given unsolicited medical advice. I was once told that essential oils can actually cure Cystic Fibrosis. I’ve been asked, “Have you tried X?” about a thousand times, and given articles ranging from chiropractic therapy and "green shakes" to salt rooms. (Note: I have researched and am open to alternative treatments. I've even acquired a salt lamp, we use essential oils and take daily vitamin supplements.)
I recognize that these well-meaning gestures are usually done out of love. What I wish I would have said to these people, instead of standing there with a dumbfounded look on my face, was this:
Ever since my children were diagnosed with Cystic Fibrosis, I have thrown myself into research, online, on the phone, with other CF families, and in clinic. I've learned and continue to learn, as much as I can about the disease, treatments, and prognosis. I’m not just sitting around, accepting that this is a disease with no cure. I have sought out opinions and second opinions from professional CF Medical Centers. I have participated in surveys, humbly questioned our medical team, joined advisory boards and support groups. I’m doing what I believe is best for my children. No, I am certainly not a professional, but I’m their mother and nobody knows my child better than me.
When I want input or advice, I promise, I will ask. But if you are absolutely compelled to share your latest tip or remedy, try this approach instead:
“I’ve been thinking about your family. I recently learned some information about "X" that could benefit you. If you’re interested, let me know.”
Don’t be like the lady in the church nursery who decided to give me her opinion, on Mother’s Day, that my 15-month-old was probably autistic and to consider having him seen by a specialist. (Her basis was that my son always cried inconsolably when she was on duty.) That made for a very memorable Mother’s Day, as I immediately grabbed my child, exited the church, and called our primary care physician in tears. My doctor sympathetically assured me, backing it up with a medical degree, years of experience, and knowing my child since the day he was born, that in no way did she ever think he was autistic.
I have peace in my heart towards these people and do not harbor any animosity. I recognize they care. But after this recent instance, and hearing other experiences from moms raising children with a serious illness, I want to get a couple things off my chest.
To those wanting to share medical advice, especially with someone who is dealing with a serious condition, understand that they have most likely become “an expert in their field”, and are taking the path that is right for them. Your “help” by offering remedies or cures isn’t actually helping. Instead, it’s often emotionally wearing and invalidating.
Know that parents, specifically those raising children with a life-threatening medical condition, feel the weight of the world on their shoulders and are often overwhelmed, tired and worried. I personally struggle on a daily basis, keeping track of which kid needs which medication, when to refill prescriptions, recalling the last time my kid had a BM and if it looked normal, what color is their snot, who needs a sinus rinse once daily and who needs it twice, and updating an ever-changing regime. It's a daily grind, for the patient and the caregiver.
What we could really use is your encouragement. Raising a family is just plain hard, whether kids are sick or not! And we cannot do it alone. I'm grateful to those that have come alongside to support and lend a hand in tangible ways. One of the most meaningful gestures was from friends who shipped us a bottle sterilizer for the purpose of sanitizing neb-cups. They knew what we were using for treatment, (inhalants through a nebulizer, requiring sanitation of 6 neb-cups a day by either boiling on the stove or running through the dishwasher.) They saw our need and supported us in our efforts.
I appreciate the hundreds of friends, family, medical professionals and community members who have lightened our load and encouraged us on our journey.
The Hall family, displaying the amount of medication their girls take over the course of one year for Cystic Fibrosis.