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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TIME

TIME. It’s on a lot of our minds. Maybe we find ourselves running out of time in our day, trying to juggle work, our children’s schoolwork, household responsibilities, exercise. Maybe we find ourselves with too much time on our hands, out of work, living alone, watching the seconds tick by. The days meld together, with nothing to distinguish one from the next. Should I measure the days by how much milk is left in the fridge? By how many sleeps until I chat with my friends online? By how many enzymes are left in the bottle, or how many days of Pulmozyme remain until I must head back to the pharmacy to replenish Sophia’s meds?  No matter how I look at it, I am starting to become robot-like in my day-to-day actions. I am starting to forget how to appreciate time and am instead encumbered by it.

A friend of mine showed me a video by Beau Miles (https://www.youtube.com/watch?v=EvT5XS7j-Dc&t=1s), who decided to mark each hour by running a mile and filled the gaps in between with projects. Over 24 hours, he ran a marathon and marked off dozens of tasks on his to-do list. He forced himself to focus on his work, his body, and his mind. It got me thinking…

Maybe I should measure my hours by the breaths I take, the hugs my kids give me, my successes (no matter how big or small). I should rejoice the passing seconds, not endure them. At least for 24 hours.

Many of us are guilty of taking some things in life for granted. Maybe it’s the love of your family. Maybe it’s fresh air you breathe, or the clean water you drink. Maybe it’s the ease of each breath.

In the days of COVID-19, more people are realizing how precious health is. They are learning the importance of washing their hands, covering their coughs, and keeping their distance.

On May 31, I am challenging myself to run (let’s be realistic… walk) a mile each hour for 24 hours. I will not take the strength of my body, my mind, and my lungs for granted.

I am doing this to support my daughter Sophia, who lives with cystic fibrosis and spends hours every day focused on improving her breathing.

Cystic fibrosis affects many body organs, but most noticeably the lungs, where thick mucous accumulates and breathing becomes difficult.

What can YOU do? You can take this challenge with me. You can come out and cheer me on as I run/walk by (I’ll be doing a 1-mile loop in my neighbourhood). You can donate to Cystic Fibrosis Canada: http://my.e2rm.com/personalPage.aspx?EventID=283991&RegistrationID=4635073. You can start appreciating your health, rather than taking it for granted.

 


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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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Motivation

What drives us? What makes us get up in the morning and accomplish things? Crawl out of bed or jump out of bed?

This is my pep talk. As I start feeling tired and burnt out, I need to remind myself of all the reasons I keep going, and going, and going.  

Love.

That’s an easy one. My love for my kids is what pushes me to keep raising funds and awareness for cystic fibrosis. I want Sophia to have the best life possible. I don’t want her to feel the burden of living with an illness. I want her to be able to do anything and everything she puts her mind to. I want Simon to live without fearing what might happen to his big sister. Love is my most positive driving force. It makes me feel like I’m riding on a big white puffy cloud. Every breath pushes me higher and closer to my goals.

Anxiety.

Not such an easy one to cope with. It can be crippling. Or it can be empowering. The heavy feeling in my chest. My heart racing. My mind buzzing. These could each have the power to stop me in my tracks. And at times, they have. Or I could harness them. What good is a racing heart, if you’re not pushing yourself? If you’re not moving forward? What good is a busy mind if it’s not coming up with new ways to motivate others, to fundraise, to be a more productive person? 

Fear.

I hate this one. It sneaks up on me. It makes me sad. If I embrace it and face it head on, it can make me a stronger person… or so people say. Sometimes I confront fear. Tell it to back off. Sometimes I escape. If I run quickly away from fear, then I can sometimes close in on the next feeling… 

Hope.

Ah, yes. Hope. Hope fills my bucket. The more support we have, the more research pushes forward, the more hope we have. I like it. But I can’t sit around waiting for hope to find me. I look for it in the news releases on breakthroughs in research. I find it in the ever-increasing median age of survival. I breathe it in when I see Sophia racing with her friends.

We all have our reasons for getting out of bed in the morning.

 


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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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Moment in Time

Peacefully asleep, dreaming of warm summer days, dreaming of the day I get to sleep in, dreaming of a hundred things that are just beyond my grasp. Thud-thud-thud-thud-thud…. “wha’s tha’?” I think groggily to myself. One heavy eyelid opens slowly to assess the situation. Little boy silently standing next to my bed, staring at me. After the “creepy, how long has he been there” thought passes through my foggy brain, I think “wow, he’s adorable,” just as he scrambles into my bed and snuggles in beside me. I can see the curl of a smile on his lips as he scrunches his eyes closed. In this moment, the “parent-y” side of me wants to march him back to bed and tell him not to get out until the sun is shining. The “human-y” side of me puts my arms around him and holds him close, curls my mouth into a smile, and scrunches my eyes closed. How many more precious moments like this will I have before he’s “too big” for snuggles? I don’t know, so I’d better hold onto this moment in time.


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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.