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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Watching Children Learn

My husband and I have always taken our cues from our kids. When Sophia wants to see how a caterpillar turns into a butterfly, we teach her about cocoons and show her a You-Tube video.  When Simon points at a spider and says ‘what’s that’, my husband teaches him about spiders. When they ask why the stars don’t fall out of the sky, then we look it up.

We’ve used the same tactic when it comes to questions about cystic fibrosis. For years Sophia had no questions. It wasn’t until she told me that the reason Simon doesn’t take enzymes is that ‘he’s not big enough’ that I realized we had some educating to do. I explained that his tummy works differently and that he already has those enzymes inside him. Sophia seemed pretty happy with that explanation. I’m still waiting for a question about why Simon doesn’t do chest therapy, even when he has a cold. I’m always telling Sophia that the reason we do it so often when she’s sick is so that it will help her get better sooner. I hope she hasn’t concluded that we’re not that concerned about how long Simon stays sick! I’ll keep an ear out for random comments to that effect…

It’s fascinating to watch little minds at work. When Sophia was learning about boundaries and rules, all we had to do was say ‘no’ once and she’d get it. Simon, on the other hand, likes to constantly experiment to see if the boundary has changed, or at least softened a little since his last exploration of it 5 minutes ago. The word ‘no’ elicits a pause in his activity, a couple of deep breaths, a casual glance around to see if I’m still there, and then a slow reach for the DVD player. As though the boundary is a physical line, and he’s just checking to see where exactly it lies. Fascinating. Frustrating at times, but fascinating.

Sophia loves numbers, likes to count, do simple addition and subtraction. Yesterday she asked for a fish sandwich… which is actually a bun stuffed with goldfish crackers. She requested 65 fish. My husband looked at her, surprised. She usually stays under 39, in her comfort zone. For those who haven’t heard it before, “65 roses” is what many small children called “cystic fibrosis” because it’s easier to say. Jason and I have recently talked about a 65 roses poster that we’re having framed for her room. I’m guessing this is how she got the idea to use the number. Now I’m curious to know if this number has any other meaning for her… i.e. does she think we say 65 roses every time we talk about cystic fibrosis? Her use of the number may just be a casual repetition of a word we’ve said. Or we may be on the verge of another discussion.

Either way, these little forays into a child’s mind keep my days interesting and my love for my children strong.


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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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Growing Up

It always amazes me that in 9 short months (though for the pregnant woman it can seem like the longest 9 months ever), two cells divide into millions and a living, breathing human being is created. It amazes me in equal fashion that these beings remain dependent on their parents for almost 2 decades (longer in some cases, I’m told). But when you break it down into days, months, and years, there is constant progress. Every day I am thrilled that my 21-month old son has learned a new word (so far they’ve all been good ones… except maybe ‘MINE’ and ‘NO’). Yesterday my 4-year old Sophia aced several categories of Brain Age, and spelled both ‘Sophia’ and ‘Mommy’ perfectly without prompting.

And then there are milestones unique to some children. I remember clearly the first time Sophia held her own nebulizer for chest therapy. I finally had a few minutes of freedom to clean up the breakfast dishes or drink my coffee. I remember when she finally let me use nasal spray, without having it squirt into her eyes and hair with last-minutes dodges. Yesterday Sophia swallowed her first pill, using just a drink to wash it down. This is a momentous occasion. I don’t have to bring applesauce and a spoon everywhere I go! For the life of me I haven’t been able to find a small container that doesn’t leak sticky applesauce juice into my purse. During these moments I am as excited as I am with all of her other achievements- going to the potty by herself, her first word, the first time she caught the ball I threw at her (there were a lot of sore noses leading up to that one).

I’m still waiting for some other milestones to be reached… like the first time she doesn’t scream during her throat swab, and when she sits still for bloodwork… and I can’t wait for her to share and play with her brother, stand up on skates alone for the first time, ride her bike without training wheels.

Such is life, and it’s a beautiful thing to behold. The ebb and flow of achievements and setbacks, but always progressing forward. Being a parent is a wonderful thing.

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Community

As I gear up for the 2nd Annual Charity Ultimate tournament, with all proceeds going to Cystic Fibrosis Canada, I feel very thankful to be part of such a great community.

We started this tournament last year… it was called the 1st Annual Charity Ultimate Tournament then. There were only 4 teams, it took place in the middle of the night (indoors, there were lights, we’re not THAT crazy), but somehow we managed to raise almost $4000. There were so many awesome people who, although they were not all daft enough to want to play Ultimate at night, still supported us by donating to Cystic Fibrosis Canada. This was a true community at work.

We live in a world pushed along at lightning speed by smart phones, Twitter, Facebook, and so on. We can be so disconnected from real-life interactions that we spend hours texting others, reading the latest tweets, keeping on top of our email, all while visiting friends- people actually sitting next to us. And this is deemed socially acceptable. Given this frantic state of affairs, I was humbled to see that this type of community still exists. A group of like-minded sporty types all rallying behind a fellow player and her family. Taking a break from their virtual worlds and helping out a friend.

This year we are aiming even higher, and running an all-day 4 on 4 ultimate tournament, with Mens, Womens, and Mixed divisions. Instead of 40 people playing, we are aiming for 400!

Thank you TJ for lighting the fire. Your enthousiasm is contagious. I am really excited about this event! If you’re in or near Ontario and want to enter a team or as an individual, please email me: FavoursForCysticFibrosis@gmail.com.

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