My son Beckett just turned 10. We moved to Winnipeg last year, but Beckett enjoyed his early years in British Columbia. Beckett is precocious, with a giant heart and adventurous spirit. Between 13 long hospital stays, he has done some really cool stuff. We have spent summers in France, Iceland, and Tanzania. He has developed a love of competitive diving. He has fostered a menagerie of pets including chinchillas, guinea pigs, cats, a dog, and a gecko named Claud.
Beckett was diagnosed with cystic fibrosis (CF) when he was five months old. This was before the newborn screening program, so Beckett had to endure months of pneumonia (and irreparable lung damage) and failure-to-thrive (from which he has never been able to recover) before his pediatrician discovered that CF was the root cause of his struggles. I often wonder what Beckett’s health would be like today had we known he had cystic fibrosis earlier.
Advocacy for newborn screening was our first encounter with Cystic Fibrosis Canada. Their success ensures that other babies will have the best possible chance for early diagnosis and treatment. So, when CF Canada reached out to our family to talk about the hard questions we face now, we couldn’t help but want to share some of our experiences.
There are the big questions: Will Beckett get the opportunity to grow up? Do we have the emotional strength to be excited about medications that might not work, or get funded? Can our finances bear the burden of time off for doctor appointments and hospital stays, as well as tutors and therapists? How do we talk about death with our children?
But the smaller, daily questions are actually the hardest. Each day we ask ourselves how to manage CF with grace. It’s easy to pare down his treatment regime to say “it’s only an hour a day” and his medication list to “it’s just 30 pills” and his hospital stays are just “14 days of IV antibiotics”. But in reality, that hour of treatment means asking whether or not there is enough time for swimming lessons and homework. Those 30 pills lead to sometimes insensitive questions from curious classmates. His hospital stays ask him to face the terror of his needle-phobia. Those small questions may seem trivial, but they are relentless.
Cystic Fibrosis Canada advocates for health programs and CF clinics, and promotes access to drugs and services that our family needs. Sometimes the research they fund gives us the answers we desperately need. Sometimes, they just give us the breathing room to get by from day-to-day, one question at a time. This season, please consider a donation to help them do that.
-Desneige Meyer, mother to Beckett
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