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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Our Amazing Race

Some days I’m tired. Some days I’m really tired. Even when I haven’t left the house, it feels like I’ve been running in a very long race. Welcome to Parenthood.

I have a confession to make. I am a closet Amazing Race fan. I like watching people in difficult situations, being pushed to their limits. I like to know where people ‘draw the line’ and say ‘that’s it- I give up.’ Maybe I’m sadistic. Maybe I took psychology in university.

The more I watch the show, the more I feel it mimics my life. My teammate is Jason. He’s got my back. He’s always there to give me a hug at the end of a rough day. No matter how hectic our schedule gets, he’s supportive.

Route Markers tell us where we need to go. We find these in the opportunities to increase awareness, to raise funds, and to motivate others.

Detours make us work together as a team. Every Spring, we rally our team Zoom Zoom to raise funds for the Great Strides Walk. We’ve raised over $150,000 in the past 5 years. I think we make a darn good team.

Roadblocks. We never know when they’ll show up, but they’re inevitable. They usually creep into our lives in the form of drippy noses and a proportional decline in good behaviour. During these roadblocks, the task is to complete 4 hours of chest therapy, 12 hours of sleepless coughing nights, and 8 hours of nose-wiping each day. For a week. If conditions don’t improve, we’re hit with a U-Turn. Go back to clinic, get a prescription for new medications, and try again.

In the good times, we’re given an Express Pass. Keep on your current course, and it’s smooth sailing to the Pit Stop.

Jason and I have a common goal: to be the first one to arrive at the last Pit Stop of the race. To win the race, and find a cure for cystic fibrosis. There’s no prize money at the end of our race. There’s no fame. But there’s something better. There’s hope for our daughter, for our friends, and for the thousands of strangers out there living with cystic fibrosis.

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A Positive Energy- Thank You Shinerama!

Last week I was honoured to be invited to speak at Wilfrid Laurier University’s Shine Time. Since 1964, university students across the country have been raising funds for Cystic Fibrosis Canada during Shinerama. Last year Shinerama raised over $1 million dollars. This year, the students at WLU alone raised over $10,000/hour on Shine Day and managed to raise over $160,000 during their campaign. There are over 60 schools across Canada that participate in Shinerama. Unbelievable.

For the past 2 years, during Orientation Week, I have spoken to small groups of first-year students in a classroom setting. I’ve told them a bit about cystic fibrosis, and have shared our story with them. This year I was asked to speak to a larger group. I had no idea what I was in for. An upper-year Shinerama leader met me at my car and walked me across campus to a very large building. It is called the Athletic Complex. It has a seating capacity of over 2000. When I walked in, the bleachers were almost full and the floor was packed. Shinerama Leaders were rallying their “colour groups” by chanting at the tops of their lungs. I honestly thought the bleachers might break with all the stomping and jumping up and down. Although I couldn’t always hear the words (it was just so loud!), I knew that the message was about fighting cystic fibrosis and finding a cure.

I was speechless. All of these students were going to raise funds for my little girl. They were excited about it. They were jumping up and down. They were cheering and singing. Most of these incredible people had no personal connection to cystic fibrosis, yet there they were shouting loudly that together we’d find a cure. As the groups settled down, Olivia Montgomery (this year’s Campaign Director) told the students a bit about Shinerama and just before introducing me, yelled “Bling Bling”, to which the masses responded “CF ain’t no thing!” Their enthusiastic applause lasted long enough for me to gather myself together, regain my capacity for speech, and share my story.

As Sophia gets older, I find that 2 things are happening. First, it’s harder to give speeches without getting emotional. Second, I feel more motivated (perhaps laced with an undertone of desperation) to inspire others to help raise funds for research. Although I know it will continue to get more difficult for me, I’m happy to know that my dedication to finding a cure is unwavering. When passion is true, it doesn’t falter.

Thank you once again Shinerama students- for listening to my story, for volunteering your time, for sharing your energy, for sharing my tears, and for raising much needed funds for research. You are AMAZING.


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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