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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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…).


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Landscapes

My  husband and I have been planning our camping trips for this summer. I’ve been thinking a lot about landscapes. I’m at my happiest sitting on a rock looking out on a calm lake, listening to the loon’s call echo across the water. Better still, I am sitting next to my hubbie, enjoying some hot chocolate, watching the sun set. The winter blahs are making me day dream about warm summer nights. As I sit here longing for nicer weather, the realistic side of my brain tells me I’m going to have to wait a few more months. Blah.

Maybe I could ponder landscapes in a different way to while away the cold dreary days. That might be more constructive than all-out depression. First, maybe I’ll think about other people’s lives. I imagine a corporate-type who works long hours, doesn’t see her family very often, and although she is happy with her career, she feels as though she is cramming her family into the empty spaces. This, to me, would look like tall office buildings on a cool and rainy day. Hopping over puddles to make it to work on time, a city bus drives by and soaks me from head to toe. That’s not the sort of landscape that appeals to me. Clearly.

How would I describe my life? Each day is filled with two little kids. There’s an overall sense of ordered chaos. I’m often exhausted by the end of the day. There is a schedule. I usually feel like I’m herding kittens. There are really awesome moments scattered throughout. I think this would look like an orienteering race. There are checkpoints (naptime, dinner, bedtime). There’s no clear way from one to the next. Most of the time it’s tough slogging through the underbrush. Sometimes we get stuck in raspberry bushes, or have to trudge through a swamp. Sometimes there are open trails to run along. There are always moments of beauty. The waterfall between checkpoints 3 and 4. The cool-looking snake you jump over while leaping from one rock to the next. The trilliums in bloom. The finish line.

What’s the landscape of your life? Is it a still picture, or is it constantly changing? Where are you when you’re the happiest? Hold onto this image. I’m holding onto mine. It will get me through the bleak winter and into my favourite season ☺

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Lessons from my children

Children are pretty incredible little beings. There they are- so little, so dependent. Stuck in a world where all they see in a crowded room are pant legs and jackets. Groping desperately for mommy or daddy. We are their life line. Without us, they would starve for food, for love, for safety. And here we are- so big, so strong. We keep our little ones warm, comforted, sustained. We are so quick to judge when they cry or whine. They should know better. But really, why should they? These poor little creatures are just trying to get by. They desperately want their independence, but know it’s all the way on top of the coat rack. There’s no way they’re going to reach it, but they’re going to get that chair and stand on their tippy-toes trying to get there.

After a particularly rough parenting day/week, I feel so tired I could cry. If a blink lasts too long, see you tomorrow. What makes me so weary? Well, lots of things, but whining, screeching, bossiness, and a healthy dose of heel-dragging doesn’t help. When I get to feeling sorry for myself, I take a look at my desktop background picture (below) and I smile. How can I keep up my grumpiness for long when I see that grin? There’s a little guy who faces obstacles every minute of his life, but is always willing to share a smile. I could learn a thing or two from my little man. Even when ‘life might end’ (aka mommy didn’t let me stand in the middle of the dining room table), there’s always a game hiding around the corner. As long as I take the time to acknowledge the ‘unfairness’ of my actions, Simon will recover and be his jolly ol’ self within minutes.

By writing, by talking to friends, by leaning my head on my husband’s shoulder, I acknowledge my own feelings. Thank you Simon for teaching me to shake it off and get back to having fun.


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The vessel or the space inside?

In my teenage years, I tried to understand different religions, from Taoism to Buddhism to Christianity. I realized early on that I would never become an expert on any of them. I only ever scratched the surface. Instead I tried to learn from each and create my own set of doctrines. During this time, I discovered Tao Teh Ching, by Lao Tzu. I found it to be vague, but fascinating. The true meaning lying just outside my grasp. In all honesty it was often miles from my grasp. I want to share one of my favourite sections with you:

“Thirty spokes converge upon a single hub;

It is on the hole in the centre that its use hinges.

We make a vessel from a lump of clay;

It is the empty space within the vessel that makes it useful.

We make doors and windows for a room;

But it is these empty spaces that make the room liveable.

Thus, while the tangible has its advantages,

It is the intangible that makes it useful.”

When I applied this idea to myself, I made some realizations. We have arms and legs, we have eyes and ears, we have lungs and a heart. While these tangible aspects are what makes us live, the space between them is what makes us alive. On most days I don’t care if my hair is pretty or if my clothes are trendy. On most days I care about being true to myself, on loving and respecting those around me. What about you? Do you care more about the vessel or the space inside?