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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5 Comments

What’s Your Focus?

Don’t get me wrong, I love to wallow in my sorrows as much as the next person. Sometimes I can think about what my day or my week holds and feel a wall of anxiety threatening to wash over me. I can get so lost in a frustrating moment that I want to scream out loud “Poor me!” I hear the “mommy” wail at 5:30am and feel dread about what challenges the day may hold. I’m human.

But this year, I’ve made a strong effort to be a different kind of human. Yes, those moments still happen. My husband is all too aware that one of *those* moments happened this very morning. What I’ve tried to change is my bigger focus. Last year at this time I was burnt out. I had spent countless hours fundraising, working, parenting, advocating, and building awareness. I was Done. I felt sick and fatigued all the time. Even during the small window of time I carved out for myself to play Ultimate, I felt nauseous and couldn’t enjoy myself. This year I promised myself I’d take on fewer things and focus on my health. As you know, I broke the first promise and actually took on a lot more. But I didn’t want to break the second. So every day, I worked a little bit on my health.

I became an expert on ‘power naps.’ I never thought of myself as the napping type, but it’s amazing what 20 minutes of ‘zone out’ time can do for one’s psyche.

I focus on the ‘little things.’ Amidst the chaos that is my life, I try to remember and share at least one endearing moment from each of Sophia and Simon’s day. The other day Sophia (age 4) was colouring a picture with an ocean, boat, and sun. She had coloured one half of the ocean light blue and the other dark blue. She told me that the sun wasn’t shining on the dark side. In my mind she’s the most brilliant little girl that ever lived. Simon (age 2) approached me with a very serious look on his face and said “I am not a princess. I am not a baby. I am Simon. I am a Boy.” I love it! The frustrating moments still happen.  I’m choosing not to focus on them. I don’t take pictures of my kids when they’re crying, do you?

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I actively look for beauty. During the Tough Mudder race, we were heading up Mount St Louis for what felt like the 20th time. I looked over to the trees and saw the most incredible thing. The entire forest floor was covered in trilliums in bloom. A carpet of beautiful white flowers. That image got me through the next several kilometres of mud-filled obstacles.

I’m keeping my second promise by doing these 3 things: Power naps, focusing on the little things, and looking for beauty.

What’s your focus?