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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Tough Mother!

It’s been a whirlwind of a month. April and May tend to be filled with fundraising activities, public speaking engagements, and Great Strides Walk/Fun Run planning (on top of working part time and caring for 2 young children). After burning out last year, I thought I would relax a bit this year. It turns out that ‘relax’ means doing everything I did before, plus adding in several appearances on TV to launch the Mom of the Year campaign (www.momoftheyear.ca) and promote the Great Strides Walk/Fun Run AND train and compete in the Tough Mudder! Whew. I feel exhausted just writing it. Maybe someone will have to buy me a dictionary next year.

Oh yes, and I also get to watch a bunch of little kids ride their tricycles this morning! A friend of mine’s daughter goes to a local preschool. They decided to choose Cystic Fibrosis Canada as their charity for their annual Trike-A-Thon. This is special to me on a few levels. First, it’s awesome to have my friend’s support. Second, May is Cystic Fibrosis Awareness Month. What a great opportunity to tell parents in Dundas about this disease. Third, Sophia will be entering kindergarten this fall. In the 1960s, most children with cystic fibrosis didn’t live long enough to attend kindergarten. Now, half of those living with cystic fibrosis are expected to live into their 40s and beyond. What progress! I’m so thankful for all the research that has been done in the last 50 years. But I know there is so much more to be done. Sophia will still lead a life filled with chest treatments, pills, and hospital visits unless a cure or effective control is found. Thank you St Mark’s Preschool for increasing the number of tomorrows I share with Sophia!

In that mess of a first paragraph above, I mentioned completing the Tough Mudder. If you recall from my previous post (titled “Tough Mother?”), I shared my motivation for doing this race: “I am healthy. The biggest obstacle I have to face is my weak muscles. I have nothing to complain about. There are thousands of people out there with cystic fibrosis who are struggling to take each breath. I have no excuse not to do this race.” My friends Amy and Aaron Bury encouraged me to enter a team, named ‘Just Breathe,’ and we did just that last weekend. For every step of the 17 kilometres. For every gruelling second of the 22 obstacles designed by the British Special Forces. We breathed. We shivered. We sweated. We struggled. And We Completed It! Thank you Aaron and Amy for coming up with this crazy idea. Team Just Breathe raised almost $1000 for Cystic Fibrosis Canada! As Sophia gets older, I will be proud to share this accomplishment with her. Already she’s amazed by the obstacles I’ve described to her.

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Perhaps one day our whole family will enter a team!

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This weekend we are part of the Great Strides Walk/Fun Run. Our team Zoom Zoom (Just Breathe) has raised almost $32,000 so far this year, making our 5-year total over $125,000!!! Wish us luck as we aim to reach our $40,000 goal by Sunday. We’ve challenged another local team in the “Race to 40K” : http://youtu.be/9D-DMRDiUMs

 

“Volunteering is an act of heroism on a grand scale. And it matters profoundly. It does more than help people beat the odds; it changes the odds.” – Bill Clinton


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How many strides make it great?

I take great joy in watching Sophia run– whether she’s playing ‘Monsters’ with Simon and running around the loop in our house, or racing her friends to the finish line. I’m often asked by medical professionals if Sophia can keep up with her peers. It would be fun (in an academic geeky kind of way) to hook Sophia and her friends up to O2 Sat machines and stick them on treadmills and see how long they could run. Maybe I could use candy dangling just out of reach as a motivator. And exercise-powered TVs in front of them playing Dora the Explorer.  I’m thinking I might have trouble getting this idea past the ethics board. So, using just my eyes as a judge, I’d have to say that ‘yes,’ Sophia can keep up with her peers.

Coming up at the end of May, our family and friends will be participating in the Great Strides™ walk for Cystic Fibrosis. This is a 5km Walk or Fun Run. I like this event because it’s all about gathering your loved ones together, and having fun in an outdoorsy exercising sort of way. While this may be a ‘walk in the park’ for many of us, taking 7576 steps can seem nearly impossible for those who struggle to breathe. When I think of it that way, keeping myself motivated to help find a cure is easy.

In the past 4 years team Zoom Zoom has raised nearly $100,000 to help fund research and clinical programs via Cystic Fibrosis Canada. Last year alone we raised a whopping $36,000 and I hope to surpass that this year. If you haven’t gathered from previous posts, I’m a wee bit competitive. What better way to channel my energy than through fundraising to help make my little girl’s life better?

Check out our new Video (Video 2013 at the top of this screen), and feel free to get into the spirit and donate (convenient link can also be found at the top). Every penny counts. Thank you!

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