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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Mom of the Year?

This past month has been overwhelming and exciting. When I found out that my husband Jason and good friend Annie had nominated me as Mom of the Year (a campaign by Walmart Canada), I was touched. I know I take my job as a mother seriously, but so do most moms. That’s why it wasn’t a surprise to see that almost 17,000 other moms had been nominated from across the country. A few weeks after the nominations closed, I got an email informing me that I was chosen to be a Finalist, along with 7 other moms. I couldn’t believe it! That meant that my chosen charity, Cystic Fibrosis Canada, would be receiving at least $10,000.

Those who know me realize what this means to me. My goal in life is to help find a cure for cystic fibrosis. I want it to happen within Sophia’s lifetime. I want it to happen before she has irreversible lung damage. The clock is ticking. I am driven. Every day I think about how I can raise more funds for research. I try to come up with novel ideas to increase awareness. I want others to feel my passion, and I want it to drive them as well. I believe that we will be successful.

I am so excited about the opportunities that have been presented to me with this campaign. Maybe others will see what drives me when they look at my little girl, and when they hear my story. Maybe the customer buying chips will put his change into the box for cystic fibrosis at the front of the Mac’s Milk store. Maybe the science grad student will decide to choose a research project in the field of cystic fibrosis. Maybe the family trying to stay in shape while supporting a good cause will form a team and raise funds in the Great Strides Walk. Maybe the high school teacher will organize a fundraiser to motivate her students. The “maybe’s” are endless.

Thank you Jason, Annie, and the judges in the Mom of the Year competition for allowing my story to be heard. (To hear the stories of some other awesome mom’s, check out http://www.momoftheyear.ca.)


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Sophia Inspires Me Daily

For those of you who follow me on Facebook, you will have seen this tidbit before. Even though a year and a half has passed since I wrote it, it still rings true (as you can see from my similar sentiments in Sibling Rivalry):

Sophia inspires me daily. She wakes up happy every day and plays with her stuffed dog, Haddy until I come and get her. When I ask her if she had a good sleep, she gives me a huge grin and shouts “ya!” Everything is fun in Sophia’s world- from diaper changes, where she holds Haddy and sings “Haddy’s dancin’ on my bum,” to meal time where her ultimate goal is a freezie at the end of the meal, to “Zoomies” (chest physio) where she gets to watch her favourite shows. When she gets a cold and I think of it as a chore sometimes to do extra chest physio, Sophia takes it as more time to cuddle with mommy. When do we stop enjoying every moment of the day? Why is it that cynicism replaces optimism in so many of our thoughts? Instead of just being a teacher to my child, I am going to start learning from her. Why can’t being a role model work both ways? I might have her trumped in reading and math skills, but she knows how to live life to the fullest.


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Sibling Rivalry

When my husband and I were thinking about having a second child, there were many things we had to consider. The hardest part was deciding ‘how’ to have a child… now, no need to send me to Dr Ruth, we figured it out the first time. Unfortunately, knowing that we are both carriers for cystic fibrosis changed the playing field. For every pregnancy, there’s a 25% chance our child will be born with cystic fibrosis. To us, this seemed like a big risk- not one we wanted to take. We decided to go the route of in vitro fertilization. The experts then take one cell from each embryo and test it for cystic fibrosis, using what they call ‘pre-implantation genetic diagnosis,’ or PGD. To say that this technology blows my mind is an understatement. After figuring out the ‘how,’ we were ecstatic to welcome the ‘who,’ Simon, into our family 9 months later.

During the pregnancy I wondered if Sophia would ask why her little brother didn’t have to take enzymes or do ‘zoomies’ (our name for chest therapy). I hoped that she wouldn’t feel singled out. I didn’t want her to feel burdened by all the extra therapy she had to do. As the days and months passed I realized how wrong I was. Sophia didn’t feel burdened by her therapy. It was our time to cuddle and bond. She didn’t feel singled out. She felt loved. It was Simon who was struggling. As proficient as he has become at playing by himself, he still feels left out. ┬áSometimes he’ll look at Sophia and I and start crying. He’ll try to pull himself up onto the couch to be with us. Sophia has become okay with having her little brother share in the cuddling part of ‘zoomies.’ I explained to her that Simon needs snuggle time too. Sophia understood.

Life always throws curve-balls, yet I was still caught off guard. I was prepared to explain to Sophia why Simon was ‘lucky’ enough not to need chest therapy. Instead I am explaining to her why he wishes he did. I know that their relationship will always be dynamic. I will try to stop building expectations, as they will probably keep tumbling down. Thank you Sophia and Simon, for keeping me on my toes, and teaching me something new every day!


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Olympic Dreams

When we found out that Sophia has cystic fibrosis, some of my first questions were about physical exercise. Would my daughter be able to participate in gym classes? Would she have the endurance to go on long walks? Would she be able to keep up with her peers and play sports? The answer to all of those questions was an emphatic ‘yes’! But in small print, at the top-right-corner of that ‘yes,’ was an asterisk. I could hear it in the medical professional’s voice. “Well, she’ll never get to the Olympics, but she can and should play sports for her physical and lung health” was the explanation at the bottom of the page.

Having just watched 16 days of Olympics with Sophia, I started thinking about that remark. I heard it three and a half years ago, but it still echoes in my mind. Could Sophia make it to the Olympics? How big should our dreams be? Do my own thoughts need to have asterisks? I don’t know. But what I have figured out is that sometimes my thoughts have caveats hidden behind them. Like the bunny that hides in the clover in the middle of my backyard, these stipulations were quietly waiting to be discovered. Instead of allowing these asterisks to drag me down, I think I’ll expose them for what they are. They are unknowns. I will not allow them to stifle dreams. When Sophia and I were watching various sports she showed me how fast she can run, how high she can jump, and how far she can throw. You go girl!


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Pressure

Positive reinforcement comes from family and friends. “You are the

Reason Sophia’s doing so well.” I feel proud of my commitment to her, but

Expectations for her good health are high. What if Sophia should get really

Sick? Is it my fault? Did I not work hard enough? Of course not. I am

Strong, but not infallible. At times I will take her illness personally. I look for

Understanding from my support system. I can’t take all the credit for her health.

Reasons beyond a mother’s control cause up and downs in cystic fibrosis. I feel both

Energized and wary of the ups. We can’t always judge the parent for the downs.

Being the parent of a child with cystic fibrosis comes with great Pressure.

Thank you to my loving family and friends for supporting me through all the peaks and valleys.