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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What’s Your Focus?

Don’t get me wrong, I love to wallow in my sorrows as much as the next person. Sometimes I can think about what my day or my week holds and feel a wall of anxiety threatening to wash over me. I can get so lost in a frustrating moment that I want to scream out loud “Poor me!” I hear the “mommy” wail at 5:30am and feel dread about what challenges the day may hold. I’m human.

But this year, I’ve made a strong effort to be a different kind of human. Yes, those moments still happen. My husband is all too aware that one of *those* moments happened this very morning. What I’ve tried to change is my bigger focus. Last year at this time I was burnt out. I had spent countless hours fundraising, working, parenting, advocating, and building awareness. I was Done. I felt sick and fatigued all the time. Even during the small window of time I carved out for myself to play Ultimate, I felt nauseous and couldn’t enjoy myself. This year I promised myself I’d take on fewer things and focus on my health. As you know, I broke the first promise and actually took on a lot more. But I didn’t want to break the second. So every day, I worked a little bit on my health.

I became an expert on ‘power naps.’ I never thought of myself as the napping type, but it’s amazing what 20 minutes of ‘zone out’ time can do for one’s psyche.

I focus on the ‘little things.’ Amidst the chaos that is my life, I try to remember and share at least one endearing moment from each of Sophia and Simon’s day. The other day Sophia (age 4) was colouring a picture with an ocean, boat, and sun. She had coloured one half of the ocean light blue and the other dark blue. She told me that the sun wasn’t shining on the dark side. In my mind she’s the most brilliant little girl that ever lived. Simon (age 2) approached me with a very serious look on his face and said “I am not a princess. I am not a baby. I am Simon. I am a Boy.” I love it! The frustrating moments still happen.  I’m choosing not to focus on them. I don’t take pictures of my kids when they’re crying, do you?

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I actively look for beauty. During the Tough Mudder race, we were heading up Mount St Louis for what felt like the 20th time. I looked over to the trees and saw the most incredible thing. The entire forest floor was covered in trilliums in bloom. A carpet of beautiful white flowers. That image got me through the next several kilometres of mud-filled obstacles.

I’m keeping my second promise by doing these 3 things: Power naps, focusing on the little things, and looking for beauty.

What’s your focus?


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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