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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Awareness

One of the hardest things in life is remaining non-judgmental. Many of us claim to be completely open-minded in a self-righteous sort of way. “I would never judge a person…” But if we are true to ourselves and actually self-aware, we know how many disapproving thoughts fly through our heads. When a parent carries a screaming child down the grocery store aisle, we think ‘I’m glad I have better control over my own children.’ When a driver cuts us off in traffic, we pick the most salient attribute (car type, age of driver, sex of driver, etc) and make a disparaging comment under our breath. Now, thankfully, most of us keep these thoughts in our heads. Some of us even open our minds to why people behave the way they do. Perhaps that child missed a nap or is coming down with a cold. Maybe the driver is on route to the hospital to visit a sick relative, or perhaps he/she just made a mistake.

I believe that one way to cut down on prejudice is to watch how we label people. Take a few days and listen to your inner commentary. Do you tend to refer to teenagers as ‘punks’, to whiny children as ‘brats’? Do you refer to people by who they are or by what they are? On a more subtle note, is Mr B down the street a cranky old git or is he a man who has led a difficult life? Is my daughter a cystic fibrosis patient, a cystic, a cyster? Or is she a young girl with cystic fibrosis. How would you prefer to be addressed? ‘Person-first’ language is a great rule. We all have complicated lives. We all make mistakes. At some point in our lives we will all battle with illness, whether it’s the sniffles, the stomach flu, or a serious disease. We are all people first.

 

“The first step toward change is awareness…”

Nathaniel Branden


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An Ultimate Success

After a couple of months of planning, we pulled off our 2nd Annual Charity Ultimate Tournament last weekend. My friend TJ is a great ‘ideas’ kind of guy. He approached me in January and suggested we try to make this year’s tournament bigger and better. Last year we had 44 people join our overnight Ultimate tournament (11pm-4am is a tough sell). Even I wasn’t all the keen on staying awake during my prime sleeping hours. This year we decided to try for an all-day tournament. We secured our indoor location, Soccerworld, for March 30th. TJ thought it would be a good idea to try 4 vs 4, and to divide the soccer fields into smaller playing fields. Sounded great to me. Having very little tournament experience, and absolutely no experience with the 4 vs 4 format, I had no idea what I was in for.

We started spreading the word, and in no time we had teams and individuals signing up. We ended up with 14 teams from all over Ontario (London, St Catharines, Hamilton, Toronto, Kitchener-Waterloo, Kingston, Oshawa) and even some brave souls from Buffalo. 145 amazing individuals signed up for our tournament! A 3.5-fold increase from last year. We even had VC Ultimate jump on board and offer a great deal on jerseys. This was turning from a few friends gathering to play Ultimate, to a legitimate tournament!

Two weeks before the event, I found out that my ‘team of volunteers’ who were supposed to be securing grocery store gift cards to pay for the tournament food weren’t having any success. With 2 sick children, a husband organizing a conference and then away at the conference, we had to do some last-minute scrambling. Incredibly, we were able to secure over $300 in gift cards from Fortinos, Metro, Whole Foods, FreshCo, and Sobeys. More than enough to supply a lovely array of bagels, fruit, granola bars, Gatorade, etc.

Thankfully TJ knew what he was in for, and had no trouble working out playing schedules for our Competitive and Recreational divisions. After some last-minute behind-the-scenes stressful moments (timing changes, accommodating individuals and juggling a multitude of scheduling needs), tournament day arrived. It went off without a hitch. Looking at the facility from above, it was a beautiful display of organized chaos (see picture below). Our most spirited team, Inner Ninjas, even arrived with personalized jerseys, swords, bandanas, prizes, and music! I can’t speak for anyone else at the tournament, but I had a great time. I love watching good Ultimate, and I love playing mediocre Ultimate (I bet I’d love being really good at the sport too, but I’m happy where I’m at).

From registration alone, we were able to raise $5000 for Cystic Fibrosis Canada. There are more donations coming in daily from Ultimate players who weren’t able to attend the tournament. Being able to donate funds to vital research is what gives me hope for my daughter Sophia’s future. What an awesome community to be a part of. Thank you Ultimate players. We’ll see you next year for an even bigger tournament!!

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A Loose Spring

Last week, as we welcomed in the Spring season along with flurries and windchills, I felt hopeful for the promise of warmer weather. I know that where I live means that winter usually lasts closer to 6 months than 3, but I have friends who live in the far north of our country and have much chillier weather than that. I also know that come March 20th I have been given license to act like a crazy Canuck. I will wear capri’s even if there’s still snow on the ground. I have retired my winter jacket and will refuse to bring it out again, no matter how far below zero the thermometer drops. The BBQ will get used on every sunny day. I will send my husband outside in a t-shirt. He will have an ice-cold beer in his hand. We will also share this insanity with our children. Last weekend, it was 2 degrees Celsius, but my husband had our daughter out on the trails with her new bike. She looked chilly but happy when she got home. We know that warmer weather is bound to come soon.

Yay Canada (I wouldn’t wanna live anywhere else)!

Happy Spring Everyone!

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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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The Secret Culture of Cystic Fibrosis

When you enter the medical community- whether as a student, a professional, or a patient- a new language opens up in front of you. You are bombarded with acronyms, short-forms, cute nicknames for scary places (“my baby’s in the ‘nick-u’ sounds so adorable until you realize that it’s short for Neonatal Intensive Care Unit), diseases and tests named after their founders (a nice ‘thanks for the discovery’ shout-out, but really not very informative), and way more Latin than you ever knew had made it into the English language. You quickly fall into this medical-ese and find yourself telling the neighbours about the ‘incredible new neb cups for alpha dornase that the RT told you about in the NICU.’ It’s not until you notice the glazed look and the longing glances they’re giving their front door that you realize how you must sound.

At first I was so proud of myself when I could easily follow the mutterings of the doctors as they did their rounds. Then it slowly dawned on me that this knowledge is also terrifying. I would love to never know what burkholderia cepacia is, or what perihilar thickening on an x-ray means. If I never heard the words ‘MRSA positive’ again, I would be ecstatic.  This medical language filled my mental world, and also shed new light on the physical world. Pseudomonas aeruginosa sounds like an action hero until it shows up in your plumbing, in your flower garden, in the bog next to your campsite. Then you realize what a villain it truly is. MRSA (methicillin-resistant staphylococcus aureus) is just a bunch of letters until you start finding it on the hospital bedside table, in the droplets from the coughing patient next to you, on the hands of your nurse. In a world full of threats to your daughter’s respiratory health, you can start to get a little anxious.

Sophia originally picked up MRSA in the NICU shortly after she was born. She carried the bacteria for over 2 years. After many attempts to break up the colony, we finally sent them packing 20 months ago. It was so liberating to give those little ‘bug-gers’ a swift kick in the behind and be done with them. We enjoyed the luxury of earlier appointment times, and shorter hospital visits. My mind wasn’t wrought with worry about what sort of damage they might be doing to Sophia’s lungs. Yesterday I got a call from our respirologist (the cystic fibrosis doctor), informing us that they were back. And so the battle begins again. When I imagine my daughter being cultured, I like to have ‘sophisticated’ in mind. Will the 0.6 micrometre bacteria survive the onslaught of mupirocin, chlorhexidine, and sulfamethoxazole/trimethoprim that we’re attacking with this time? Let’s hope not. I’m hoping to (at least temporarily) re-enter a world without cute acronyms and Latin very soon. Cross your fingers for us!


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Follow-up to Plane Trips and Cystic Fibrosis

Well, we are back home safe and sound from our great holiday adventure. We woke up at the crack of dawn on Christmas day, bleary-eyed, and frizzy-haired. We gathered up the kids, the luggage, the plane tickets, and headed to the airport with dreams of Tim Horton’s coffee on the other side of security. The kids, free of caffeine addiction, faired surprisingly well. There was a 20-foot Christmas tree near our departure gate. While the adults woke up more with each gulp of coffee, the children skipped around the Christmas tree. It was lovely in a 6am sort of way.

After struggling to position the carseats in the plane, and Clorox-ing every reachable surface, we were ready for take-off. Based on a good tip from a fellow parent of a child with cystic fibrosis, we also turned the air vents off above our heads. No need for recycled air and coughs from nearby passengers to be shared with us. Sophia enjoyed a constant stream of snacks and television. Jason struggled to know how to manage her enzymes with her constant grazing… and eventually settled with “one every 15 minutes.” Simon practiced the word “out,” annunciating very loudly and clearly for an hour, before giving up and eating some grapes. All in all, it was a good flight.

We arrived at our destination still early in the morning, thanks to the time change, and were able to complete Sophia’s chest therapy at the usual time. We had a truly enjoyable visit with family, and managed to stay infection-free the entire time… a small miracle. On the way home the adult to child ratio was decreased (2:1 on the way there, only 1:1 on the way home), but we still managed to organize ourselves moments before becoming airborne. We’ve been home for 4 days now, and still no infections have reared their ugly heads. I think our strategies were successful this time. Thank you to everyone who offered suggestions on how to make this trip a healthy one!