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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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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Oh boy.

This blog has mainly focused on my journey with Sophia, the challenges we have overcome, and the victories we have cherished. I also have a 2-year old son Simon. Although he does not have cystic fibrosis, he presents me with a different set of parenting challenges. He is a little boy with a lot of spunk.

This week I get to enjoy my little guy more than usual. Sophia is away for the week with grandma, so it’s just me and Simon. All day long. I get to drink in the facial expressions he shoots at me, and hum along with his constant stream of consciousness. If I didn’t get the feeling that bad things usually happen to child actors, I would sign him up with an agent. I don’t know if it’s because he has to compete with his sister for attention that he is so loud, expressive, and dramatic, or if it’s purely a consequence of temperament and genes. Either way it’s thoroughly entertaining.

Image  DSC_1856

It’s fascinating to hear what goes through the head of a very verbal 2-year old.  Just this morning: “Mommy, I made a mess with my milk.” [stirs finger in said milk] “Look, I make a picture!” [sticks milky finger in mouth] “It tastes like warm milk! Tasty.” [puts whole hand in milk and starts smearing] “Mommy, I clean it up.” [wipes hand across shirt]. “My shirt is dirty. Let’s put it in the washer.” [heads downstairs]. About ten minutes later, with a clean shirt on: “Mommy, are you paper?” [runs at me with open marker and devious smile on face]. “No? Am I paper?” [points marker at clean shirt, eyebrows raised, slowly bringing it closer]. “No, that’s silly! Can I have some paper?” You’ve gotta be on your toes at all times with this one.

The ability to sense anxiety and prey on it is one of Simon’s strengths. Much to Sophia’s dismay, it makes him the perfect little brother. Whether he’s grabbing a toy from her hand (that he really doesn’t want) and running away at warp speed, standing right in front of her while she tries to watch a show, or letting his hand hover over her favourite food, he’s got his role down pat.

Don’t get me wrong though. Simon has a nice side as well. If a child is crying he will immediately run over and ask if they’re okay. When he feels he’s taken something a little too far with Sophia he will profess his love for her and give her a hug. Driving in the car with him is more entertaining than the radio. “Look at all the trucks! There’s a green one. I want to see a dirty truck. There’s one! Look, a Canada flag. Ooo, a motorcycle. Where did the motorcycle go? Mommy, go fast. A dump truck! A garbage truck!” I get the feeling that 2-year olds have about the same attention span as puppies.

I wonder what happens if I pull this

I wonder what happens if I pull this

“The quickest way for a parent to get a child’s attention is to sit down and look comfortable.” ~ Lane Olinghouse

“A two-year old is kind of like having a blender, but you don’t have a top for it.” ~ Jerry Seinfeld


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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.