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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Sometimes it takes a superhero (aka Happy Mothers Day)

We have recently been inspired in our house by the appearance of a Bat Girl costume. It’s pink and shiny. It has a mask, boots, arm sleeves, and cape. Who could ask for anything more? As each piece is secured in place, you can see, and feel, the transformation- from cute little girl to fierce pink Bat Girl. It’s phenomenal. And adorable. Jumps and twirls become leaps and power kicks. Hands no longer resting by her sides. Arms reaching into the air, fingers pointed to the skies. No longer walking or jogging, but running with great purpose, out to the backyard, onto the trampoline. Sophia starts perfecting her karate-chop-bum-jump-kick. From some primal spot, deep within herself, comes a loud ‘HEE-YAH!’ We are witnessing the birth of a superhero.

As a mom, my life can become many things- hectic, loud, busy, chaotic, overwhelming. Every mom out there knows about the emotional and physical storm that brews just under the surface. In the blink of an eye my life can become sweet, peaceful, joyful. My heart nearly bursts when I overhear my kids professing their love for one another, giggling, whispering, ‘playing nicely.’ The ups and downs can be dizzying at times. Like those days when you look outside to see snow, followed by sunshine, a rainbow, a thunderstorm. It’s easy to get caught up in it all.

Then I look outside to see super Bat Girl flying through the air, and my world is a better place. Sometimes it takes a superhero.

‘HEE-YAH!’ 

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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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The Ultimate Community

One dome, 8 fields, 8 discs, 16 teams, 160 players, $6000. Zero referees. Organized chaos. Calls of ‘up,’ ‘travel,’ ‘stall,’ ‘not in,’ echo through Redeemer University’s covered dome, while athletes ranging from ‘weekend warrior’ to ‘incredibly fit touring player’ run, cut, jump, dive, and catch small white discs flying through the air. Watching the sport makes you realize that Ultimate is no joke. Playing it makes you realize how physically demanding it is to make your body sprint, stop, change direction, AND catch a disc. It’s not a game for fools (but they’re still welcome to play- most of us are just nice that way).

What it is, is a community of athletes. People who get together and play all year round. People who love the sport. People with big hearts.

This is our 3rd year running the 4CF Charity Ultimate Tournament. All proceeds go to Cystic Fibrosis Canada. We’ve raised $15,000 over the past 3 years, with $6000 raised already this year. Our first year there were 44 of us, playing through the night. In the second year, there were 140 of us. This year, there were over 160. And that was just Part One. Back by popular demand, we are running a ‘Part Two’ this year, with the hope of matching what we raised in Part One.

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A special shout-out is in order for all the businesses that donate their time, goods, and services. Thank you Patch Design (http://patchdesign.ca/), Soccerworld (http://www.soccerworldhamilton.com/index), FIVE Ultimate (http://fiveultimate.com/), Breakmark Ultimate (http://www.breakmark.com/), VC Ultimate (http://www.vcultimate.com/), Walmart, Metro, Fortinos, Sobey’s, and FreshCo.

For some, it’s a fun day out. For others, it’s a chance to practice with their outdoor team. For me, it’s more than that. It’s for my daughter, and for her future. It fills me with happiness to see hundreds of friends playing Ultimate, knowing that every dollar raised is going towards vital research and clinical care. Thank you.


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Creature in the Night

Once upon a time, there lived a fairly unremarkable family. Mom, dad, 2 kids, and a dog. They went about their business in the usual fashion. Household chores, work, school, extracurricular activities, 3 square meals per day. The morning sun peaked through the front window, beaming onto shiny hair and sparkling eyes. The ticking clock marked the time, keeping them on schedule.

Through winter months, mom dreams of the warm breeze and green grass. Dad dreams of powder-covered slopes. The children dream of snowmen and snowball fights. Days pass and days get longer. Their imaginations occupy the drearier moments of each passing hour.

For children, imaginations can take you anywhere. Puppies are queens, ponies are princesses, and they’re going to the ball. Blankets can talk to us and give us hugs. Monkeys make funny faces and share their toys with us. Imaginations can also get carried away. To dark places with scary music. The age of 2.5 has brought creepiness into our home.

When Sophia was 2.5, she heard noises.  With her pale skin and messy hair, she would look at me with haunted eyes and whisper ‘what’s that noise coming from behind the wall?’ At night she would wake up scared and crying, eyeing the walls suspiciously. Aside from hoping that my child wasn’t possessed, I hoped she would learn to sleep through the night again. We spent several months tired and bleary-eyed.

Simon, just now 2.5, has started telling me about ‘the ghosts’ in his room. Upon further questioning, I find that they are ‘bad, not good’ ghosts, and that there are several of them travelling through his room at any given moment. Sometimes they hide in his closet, come down from the attic, and sleep under his bed. With an expansive and dramatic sweep of his arm, he says ‘don’t you see ALL the scary ghosts, mommy?’

Sigh. I guess we all have our inner demons and flights of fancy to contend with. Sometimes I think I hear sounds too. And they wake me up. In my half-lucid state, I may believe it’s a noise coming from behind the wall. I may see bad ghosts floating behind my heavy-lidded eyes. This sound makes me feel panicky. My heart races when I hear it. Anxiety stabs me awake. When I strain to hear it again, it’s gone, and I’m left with my husband’s snoring. My ‘scary sound’ is not coming from something paranormal. It’s from something strangely normal in our house. And it’s coming from the next room. Sometimes my imagination becomes my reality. And I’d rather it stay hidden behind the wall. 


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Keeping Perspective

I often get caught up in the hustle and bustle of life. I’d like to say it’s just around Christmas time, when most of the world seems to get a little frantic. In reality, I keep waiting for a break. I thought it would happen after Great Strides this year. But then the summer took hold- lots of illnesses, aging about 3 decades (got shingles and “broke” my hip), added into a full schedule of activities for the kids. Then of course Shinerama time, and passing on the Mom of the Year “torch” made the fall busy. Then the winter sneaks in and brings germs and hours of daily treatments for Sophia, sleepless nights, and worry.

But I digress. I know I’m not alone. We all feel busy. What I’m trying to say is that I think I’ve been focusing on the wrong things. I shouldn’t be waiting for a break, struggling to get through. I should be enjoying the little moments that happen each and every day. They’re there. Between cheerleading the kids to eat their breakfasts and get dressed before school, and negotiating ever-lengthening bedtime routines, there are some golden moments.

Yesterday when I was doing the dishes, I heard some (very) loud music coming from the basement. When I glanced down the stairs I saw Sophia uncontrollably giggling to Simon’s modified chicken dance, followed by “I love you Simey-doodle.” Golden.

We took the kids to see Santa and Mrs Claus a couple of weeks ago. When asked what they’d like for Christmas, Sophia said “lots of puppies” and Simon said “beautiful flowers.” At first I felt cynical about Simon’s statement. Our house has a lot more construction vehicles (at his request) than flowers. He’s a charmer, and I wouldn’t put it past him to know just what Mrs Claus needed to hear to keep her coming back each year. Upon further questioning though, he seems to truly love flowers. The simplicity and beauty of these Christmas wishes makes my heart melt. We should all wish for lots of puppies and beautiful flowers. Golden.

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For the past few days, Sophia has had a “new home.” She chose a My Little Pony tent from a table of gifts and has slept in it every night since. She gathers about 30 of her closest stuffed animals (aka “guys”), 2 pillows, 2 blankets, and crams herself in there. I think it’s meant to comfortably hold 2 small children sitting and playing. Every evening when I tiptoe in to turn off her bedside lamp, I can’t help but smile at the pile of Sophia items in the tent. Golden.

I hope that, throughout this busy and hectic season, you all take a moment to find the golden moments in your day. Happy holidays!


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Your Donations Hard At Work

As many of you know, I am passionate (aka relentless) when it comes to fundraising for Cystic Fibrosis Canada. Through awards and events, we’ve been able to raise almost $250,000 since Sophia was born 4.5 years ago. I often give or arrange talks about where those fundraising dollars go, but I just realized that only a few people really ever get to hear those talks. Maybe I should share some of the exciting breakthroughs here. Maybe my excitement about where research is leading will be contagious? (This is the one time I will use that word with a positive tone).

I’ll give a quick disclaimer here: I am not a researcher. I am not an expert. What I write is based on what I understand to be true. I may be (a little bit) wrong, so please comment and let me know if I’ve misrepresented any ideas.

I’ve mentioned before that cystic fibrosis is genetic. It’s far more complex than that little word implies. There are over 2000 known mutations that lead to cystic fibrosis. They can largely be categorized into one of five different protein (CFTR) malformations. Recently a drug called Kalydeco was approved for use in the USA, Canada, and many other countries. If you are part of the 4% with the protein malformation it targets, it is an incredibly powerful control (not a cure) for cystic fibrosis. In very layperson language, it basically “opens the gate” to allow the protein to pass through and do its magic. Unfortunately Sophia is not in this group. She has 2 copies of deltaF508, which is the most common mutation, and leads to a slightly more complex protein malformation than the one Kalydeco targets. Sophia’s proteins need to be fixed up a little and then let through the gate. There are large-scale studies being done right now looking at the usefulness of Kalydeco combined with another drug. We’re waiting for the final results to be published soon.

Another complicating factor is the presence of modifier genes. These are ‘other’ genes that cause one person with deltaF508 to be quite sick, while another to be relatively well. Again, research is looking at identifying what these modifier genes are, and how we can tailor treatments to each individual with cystic fibrosis.

My bias in outlining only a couple of areas of research is obvious. These are the ones that seem most pertinent to Sophia right now, so I am most interested in them. There are hundreds of other studies funded by Cystic Fibrosis Canada every year. If you are interested, there’s a booklet published yearly on the Cystic Fibrosis Canada website (www.cysticfibrosis.ca).

Some flashy and fun stats to look at (courtesy of Shinerama):

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Journey

Every journey is the same. Every journey is different. There are the good times, the okay times, the rough times

The good times make us smile. Spending time with family, having dance parties, splashing in the water, running full tilt down the hill to the park, chasing big dogs. The okay times are just that- okay. Waiting for kids to wake up, finish their meals, *patiently* waiting for the cold weather to improve. The rough times seem insurmountable in the moment, but end up as little blips in our memories. No TV on the plane to entertain the children, meltdowns over diaper changes, whining voices wearing us down.

To every journey, there’s a beginning and an end. The anticipation of going on an adventure, counting down the sleeps, packing the bags, making lists. The sudden realization that the trip is almost over, the frantic packing, the anticipation of returning to routine, looking forward to your own bed, sadness that you have to leave so soon.

And when it’s all finished, you wish it would start again. Life is a journey in itself.

When you think back on the journeys in your life, are you a pessimist, an optimist, or a realist? Which moments are most salient in your mind? Whenever the bad moments creep into my thoughts (Simon screaming ‘get me out of my seat’ 1 hour into a 4 hour flight), I try to immediately think of something that made me smile (Simon’s never-ending version of counting: 1,2,3,4,5,6,7,8,9,10,11,12,14,8,9,10,11,12,14,8,9,10…).