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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Fears and Wishes

Day after day, we’re doing ‘just fine.’

Following routines keeps us in line.

Then one day a blip in the static,

My thoughts go awry, my emotions erratic.

 

I thought I was living far away from the ledge,

But as it turns out my toe’s on the edge.

One health scare turned my head around,

I’m shocked to find no sign of the ground.

 

Proud to be tough, resilient, and stoic,

Right now I’m feeling miles from heroic.

An errant thought leads to one small tear,

Leads to many more, and more, I fear.

 

If only I had an impenetrable shield,

A sword of immunity that I could wield.

Superhero strength to protect my young,

A hide of leather that can’t get stung.

 

But, alas, we are human, limitations and all.

The best we can do is try not to fall.

And if we do, then we try to land first,

And protect our children from getting the worst.

 

Turn ourselves around and rally our powers,

Soak in the warmth and smell the flowers.

Climb back up that hill, take a big step in,

Set up a sturdy camp for the next whirlwind.

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Let’s.

Throughout the last 7 years I have experienced many different things. I’ve worn many different hats. I’ve experienced many different emotions. I’ve been many different people.

 I believe that there’s always a balance in life. With every down-swing, there will eventually be an up-swing. Maybe I’ve watched too many episodes of Seinfeld, but I believe in Even Steven. Maybe it’s just hopeless optimism. It’s what gets me through the day.

This year I experienced new challenges trying to juggle work, volunteering, life, and happiness. With the never-ending support of my husband, who sails on my ship with me, through good weather and bad, I feel like I can face anything.

I’ve had the opportunity to do some fun things this year. I can’t say they were on my bucket list per se, but they were fun. I got to see Maestro Fresh Wes at a beer festival. I got to climb a mountain next to my kids. I got to wear a tiara (this is a big deal for a girl who climbed trees and played with M.U.S.C.L.E. Men as a child). I got to be part of a professional photo shoot. I got to go night swimming.

I wear many hats. Sometimes they wear me out, but I will continue to wear them. In life, we can control a great many things, and these are the things I will try to influence. The rest are out of our control, so I’ll try not to worry about them. Let’s stay healthy, let’s be happy, let’s be successful, let’s help find a cure.

 


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My Darling

When you were inside me, my little ladybug,

You’d roll and kick, push and tug.

When I was near others I’d always be strong,

And pray to God the statistics were wrong.

Tell me darling, that it’s gonna be alright.

Hug me darling, give me a kiss goodnight.

 

Then I’d drive around, tears falling down my face,

What’s happening inside you that I can’t replace?

I want to fix you so that you can stay,

Helplessness takes hold, takes my breath away.

Tell me darling, that it’s gonna be alright.

Hug me darling, give me a kiss goodnight.

 

‘She’s the picture of health,’ people say about you,

My heart squeezes tightly, hoping it’s true.

All I can do, is everything I can do,

And hope it’s enough to make this day through.

Tell me darling, that it’s gonna be alright.

Hug me darling, give me a kiss goodnight.

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The Space-time Continuum

The days really do seem to be passing by fast. I’m pretty sure I haven’t aged in the past 15 years, so I can’t quite believe that in that time I’ve completed an Undergrad degree, a Masters degree, met and married the man of my dreams, and had 2 kids… who are already 5 and 3. The only hint of my increasing age is a few wrinkles, a few extra pounds, a few extra months to get over injuries, and this rapidly aging family of mine.

Seriously, how do I slow down time? Sophia has a wiggly tooth. I think I’m probably the only parent EVER to have a child with her first wiggly tooth, and I’m SO excited about it. Something about shedding temporary childhood and entering permanent adulthood. Until I experienced this excitement first-hand, I would have thought that I would be, at best, a little grossed out by bloody teeth falling out and being replaced by presents under a pillow.

As if that wasn’t enough excitement, Sophia also started riding a bike without training wheels! Away she goes, independently riding down the street, wind blowing her hair, big smiles and a few scraped up knees and elbows.

As the years go by, all I can hope is that the thread of love that binds us together never gets frayed or worn.

I’m going to go and give her a big hug.


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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.