cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


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Camping and cystic fibrosis

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We’re getting ready to go camping again this year. Every spring when we’re at the Cystic Fibrosis Clinic, I ask the professionals about the possible risks of camping. I want to make sure that I’ve thought of everything and that I’m not putting Sophia’s health in danger.

One thing I’ve realized: medications are fickle. Some have to be cool, others a little bit cool and definitely not too hot. Some like refrigeration, while others just won’t stand for it. I feel like I’m portaging a bouquet of delicate flowers, and each one has to come out of the camping trip intact and beautiful. No pressure. My husband and I have talked about how best to cater to these fragile medications. We look at the forecast to make sure that it won’t be so hot on our trip that Sophia’s enzymes stop working. We also have some meds that need to be cold. On more tame trips we bring an electric cooler to plug into our electric campsite. On more adventurous trips we have rigged up a system to sink the medications to the bottom of a lake to keep them cool. Once we have a plan and back-up plan set for our medications, we start to think about the environment.

There are lots of bacteria in soil and water that can make their way into the lungs of people with cystic fibrosis and set up their own campsite. Only once they’re in there, they don’t want to leave. High doses of antibiotics are needed to get rid of these bacteria. So, we ask ourselves: Is the risk of bacteria higher in our backyard or at the campsite? What precautions should we take? Our arsenal to attack this problem includes lots of hand sanitizer, lots of hand-washing, extra fuel to boil Sophia’s chest therapy equipment after each treatment, and clean mesh bags to hang and dry the equipment. We try to choose campsites away from bogs and standing water. If the weather is forecasting lots of rain, then we re-think our trip. We want our equipment to dry properly.

It seems like a lot to think about. Why don’t we just stay home or go to a hotel for the weekend? Because we believe in the magic of camping. Eating breakfast, watching the mist rise on the lake. Hearing the call of the loons. Catching a glimpse of a black bear or moose. Listening to the chipmunks scold their young. The majestic heron landing on the shore across from your campsite. Nature scavenger hunts. Sleeping in the fresh air. Singing songs by the campfire. Need I go on? You just can’t replicate that experience. You can’t learn to appreciate and respect Mother Nature from the concrete jungle.

We camped with Sophia for the first time when she was only 8 months old. I got inspired to write a children’s book about our experiences. (If you’d like a preview of this book, check out the menu link at the top of the page.) I wanted to show other children that even in the face of adversity, dreams can come true.

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Cystic Fibrosis enters my life

Welcome to my website, my blog, my foray into the virtual jungle. Like my life, this site is a work-in-progress. Please bear with me.

In the past three and a half years I have learned more about life and love than in the previous thirty. I don’t mean to take anything away from the wonderful childhood and the memorable experiences I’ve had. I only mean to highlight how much my life has changed since having Sophia. And what I’ve learned has been both beautiful and painful.

Sophia was born with cystic fibrosis, the most common fatal genetic disease affecting young Canadians. For the facts about cystic fibrosis, you can check out http://www.cysticfibrosis.ca. For the real-life-behind-the-scenes experience, you can read on. Needless to say, I was devastated when I found out that Sophia has cystic fibrosis. I had to do many things: grieve for the future, change my focus, and live for today.

My daughter sets a wonderful example for me. She wakes up each morning with a smile on her face. She doesn’t just think about how to have fun today, but how to have fun this morning, this hour, this minute. Thank you Sophia. You are the inspiration behind this.