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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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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Plane Trips and Cystic Fibrosis (Update)

This post will seem familiar to those who follow my blog… because, well, I’m recycling a post with just a couple of updates.

I’m going on a trip with the kids. Just me, 4-year old Sophia, and 2-year old Simon. Even writing it makes me feel anxious. All I can hope is that the kids are too tired to cause trouble so early in the morning. It’s a slim thread of hope to be holding onto.

We are flying for this trip, not camping (thank goodness). While this makes life easier in some ways… i.e. we don’t have to sink Sophia’s medications to the bottom of the lake, it comes with new challenges as well.

As many of you know, airlines are notorious for ‘losing luggage.’ Seriously, where does it go? Is there an underground network of escapee suitcases, scurrying through tunnels under the airport, vying for the chance at a better life on the other side? Maybe it’s like the socks that escape from my dryer. I know they’re hanging on for dear life, praying I don’t see them tucked behind the rim, so that as soon as I turn my back they can hop to freedom. I didn’t understand how the airport staff could confuse Toronto with Calgary (even my 3-year old can tell the difference between those words) until I saw the space-saving short forms for the airports. YYZ vs YYC. What brilliant mind thought of making short forms that all look the same at a quick glance? But, I digress.

Now, losing a pair of underwear or a hairbrush is certainly annoying, but by no means catastrophic. Losing the compressor needed for life-sustaining chest therapy, or the enzymes that allow food to be digested can be a lot more serious. Therefore, travelling with someone who has cystic fibrosis means a LOT of carry-on. A quick list of what needs to be carried into the cabin with us: compressor, tubing, nebulizers, percussor, salbutamol, saline, syringes, pulmozyme (packed carefully on ice packs), enzymes, vitamins, you get the idea. This can really impact the number of novels I can carry (for anyone who’s travelled with small children on the plane, I can see your smirks). Seriously though, it’s a lot to think about, and it does impact how many children’s toys and books we can bring. And you need to leave a lot of time to go through security, because you can bet they’ll be swabbing every item in your bag (most of it’s on the ‘do not bring’ list- they make an exception for medical reasons, but they’ll still take their time ensuring you’re not a terrorist).

Another aspect of plane travel with a child who has cystic fibrosis is exposure to germs. Although we would all love to imagine that after we disembark from the plane, a crew enters wearing HAZMAT gear and sprays down every seat cushion and television, we know that doesn’t happen. Last year when I took the kids on the plane, I sanitized their hands repeatedly, but they still ended up sick. This year, I am forming a new plan that includes Clorox wipes, hand sanitizer, and forcible confinement in a carseat.

I feel like I could go on forever on this subject, but will end with one more consideration. Travelling any distance on the plane requires you to be at the airport 2 hours before flight time, you spend say 4 hours in the air, and then 1 hour getting your bags and finding your ride, and an hour on either end for travel to/from the airport. All in all it can take about 9 hours to get anywhere close. So, when do we do chest therapy? I’ve tried various combinations. One time I plugged in Sophia’s compressor while in the waiting area and did her therapy there. I got a few strange looks, but I didn’t care. Unfortunately, as Sophia gets older and is more aware of her surroundings, she may care. Another time I did it on the plane. There were definitely some worried people that time. Some passengers mistook the mist that escapes from the nebulizer as smoke. The flight attendants had their work cut out for them that day. This time I am trying something different. We will be on the earliest flight of the day, and will spend most of the time travelling when Sophia should still be sleeping. We will arrive at our destination in the morning, and so I will do her first round of therapy when we get there. No scenario is ideal. I’m sure I will learn some more tricks along the way.

Even with all that in mind, I am super-excited to go on a trip. I know Sophia is too. Simon has no idea what’s going on.


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If I could put it in a bottle.

The blood-curdling scream as I hold her tight,

Her legs and arms wrapped in mine,

Hold still little one,

For it’s only bloodwork, and it will be done soon.

If I could put her anxiety in a bottle,

I would throw it deep into the ocean

Never to return.

 

When something strikes that certain note,

Deep down, and tickles her mind,

Belly-shaking giggles erupting,

Lighting up her face and my heart.

If I could put her laughter in a bottle,

I would keep it under my pillow

For a rainy day.

 

The night-time cough, the hacking cough,

Seconds become minutes become hours,

Piercing through the silent night,

The sound competing with my beating heart.

If I could put her cough in a bottle,

I would give it to the researchers

To find a cure.

 

When I walk into a room and see her face,

Whether after minutes or hours or days away,

That smile, radiating from her mouth, her eyes,

Filling my soul with unconditional love.

If I could put her joy in a bottle,

I would share it with all who suffer

And save the world.


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The First of Many New Decisions

Sophia’s experience with formal public education has begun! She started Junior Kindergarten a couple of weeks ago. The first day was full of anxiety, jitters, sweaty palms, and furtive glances into the scared eyes of all those around. For me. And the other parents. Sophia was fine. Gave me a kiss and a hug (for my benefit, no doubt), and filed off after the other children, neatly in a line. All day I stared at my cell phone, as though temporary deafness would overcome me if I looked away, and I would miss a call from the school to inform me of disaster, disease, and epidemic. Sounds melodramatic, eh? For someone who prides herself on facing challenges with calmness and control, I certainly felt a bit jumpy and ‘different’ that first day.

Each day Sophia comes home with a smile on her face. When I ask her what happened that day, the responses are vague and exactly what I might expect from my four-going-on-fourteen daughter. Through sheer parental genius, I slowly gleam nuggets of information from her throughout the day. Before bedtime we like to write stories together. Sophia narrates and I write, then we read it together. I prompt her to tell me about school, and I often get a small glimpse into her day. One thing I’ve noticed: several kids in her class know her by name, but she only knows 2 kids by name. I hope this is because she’s bubbly and fun. Not because the teacher is always addressing her by name to get her attention. Being all too aware that Sophia is often operating in her own world, I think the latter might be more true. Regardless, they all refer to her as their ‘friend Sophia’. That makes me happy.

Today I had to make my first tough school decision. Sophia has been a bit stuffed up and has started coughing more in the past couple of days. Typically I just start doing 4 rounds of chest therapy until her cough stops. Because there are only so many hours in the day, she can only really get 3 rounds in if she goes to school for a full day. The tough decision: do I take her out for the full day, part of the day, or not at all? This morning I suggested to Sophia that I’d probably pick her up at her second snack break. Her response: “Not at nutrition break. That’s my favourite part of the day! I love eating snacks at the table and then playing with my friends.” So I decided to compromise. I showed up near the end of her second break and brought her home. She didn’t seem to mind at all. Yes, she’s an awesome kid, who just made her momma’s tough decision an easy one.


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A Positive Energy- Thank You Shinerama!

Last week I was honoured to be invited to speak at Wilfrid Laurier University’s Shine Time. Since 1964, university students across the country have been raising funds for Cystic Fibrosis Canada during Shinerama. Last year Shinerama raised over $1 million dollars. This year, the students at WLU alone raised over $10,000/hour on Shine Day and managed to raise over $160,000 during their campaign. There are over 60 schools across Canada that participate in Shinerama. Unbelievable.

For the past 2 years, during Orientation Week, I have spoken to small groups of first-year students in a classroom setting. I’ve told them a bit about cystic fibrosis, and have shared our story with them. This year I was asked to speak to a larger group. I had no idea what I was in for. An upper-year Shinerama leader met me at my car and walked me across campus to a very large building. It is called the Athletic Complex. It has a seating capacity of over 2000. When I walked in, the bleachers were almost full and the floor was packed. Shinerama Leaders were rallying their “colour groups” by chanting at the tops of their lungs. I honestly thought the bleachers might break with all the stomping and jumping up and down. Although I couldn’t always hear the words (it was just so loud!), I knew that the message was about fighting cystic fibrosis and finding a cure.

I was speechless. All of these students were going to raise funds for my little girl. They were excited about it. They were jumping up and down. They were cheering and singing. Most of these incredible people had no personal connection to cystic fibrosis, yet there they were shouting loudly that together we’d find a cure. As the groups settled down, Olivia Montgomery (this year’s Campaign Director) told the students a bit about Shinerama and just before introducing me, yelled “Bling Bling”, to which the masses responded “CF ain’t no thing!” Their enthusiastic applause lasted long enough for me to gather myself together, regain my capacity for speech, and share my story.

As Sophia gets older, I find that 2 things are happening. First, it’s harder to give speeches without getting emotional. Second, I feel more motivated (perhaps laced with an undertone of desperation) to inspire others to help raise funds for research. Although I know it will continue to get more difficult for me, I’m happy to know that my dedication to finding a cure is unwavering. When passion is true, it doesn’t falter.

Thank you once again Shinerama students- for listening to my story, for volunteering your time, for sharing your energy, for sharing my tears, and for raising much needed funds for research. You are AMAZING.


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Countdown to Kindergarten

As I count down the days until Sophia’s first day in Junior Kindergarten, I feel many conflicting emotions. Trepidation, Excitement, Thankfulness.

Trepidation. At home, Sophia lives within my locus of control. I know what she eats, how much she drinks, how often she uses the bathroom. I can help explain to her peers why she swallows so many pills. I can protect her. In September I will be forced to start the process of letting go. I hope that I have prepared her for some of the challenges she will face. I feel trepidation.

Excitement. My girl is growing up. Sophia is a bright little girl who loves to learn. I have no doubt that she will do just fine academically. She likes to make new friends and is quickly learning how to play cooperatively with others. I will get to watch her mind open up to new ideas, question the world around her. I can’t wait to hear about all her adventures! I feel excitement.

Thankfulness. I am so happy that Sophia was born in 2009 and not fifty years ago. In the 1960s most children with cystic fibrosis never made it to kindergarten. I can’t fathom it. My heartbreak would consume me. Sophia fills me with love I never knew possible. I am thankful.

Only 15 more sleeps!

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Sophia’s Goodnight Story

Okay, so every parent thinks their child is a prodigy. They are the most beautiful, intelligent, articulate, graceful, witty beings in existence. Somehow we manage to block out the whiny voices, grumpy faces, hitting, screaming, stubborn, arms crossed, pouting beings. It’s a good thing for the continuance of our species that we have selective amnesia when it comes to our offspring.

So, in true parent fashion, I am going to share the brilliance of my 4-year old daughter with you. Last night she decided she wanted to make up her own bedtime story. She narrated, and I wrote. Here’s what she came up with:

 

Sophia’s Goodnight Story

 

Good night, the stars are

Shining bright at night.

 

1, 2, 3, 4, 5, 6, 7, 8.

 

Big rose, little rose,

Big roses shine at night.

 

Hoppy Haddy, Hoppy Haddy,

 

How high does he jump?

Plain out of sight, and bed.

 

Every guy inside the warm night,

Sleep tight.

 

In the night, Queens are the ones that settle in,

And sleep the night.

 

Blocks are making Floppy’s bed,

1, 2, 3, 4, 5, 6, 7, 8, 9, 10.

 

One hundred days in one day.

 

Pink balloon, Haddy Hoppy box,

Trophy, twenty-three blocks.

 

The End.


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Alphabet Soup for the CF Soul

Appointments lasting half the day,

Bacterial swabs on the tray.

Compressors drone, nasal spray,

Drugs inhaled two times per day.

 

Exercise, exercise must be done,

Frisbee, soccer, bike, or run.

Gain more weight, eat a tonne,

High calorie shakes sure are fun.

 

Increased treatments when you’re sick,

Just 2 hours more, hear clock tick.

Keflex just might do the trick to

Loosen up that mucous thick.

 

Meds counted out, neat in a line.

Never forget this CF rhyme:

Oh salbutamol, saline, salt, enzyme,

Pulmicort, prednisone, pulmozyme.

 

Quietly watching her fall asleep,

Realizing that my love’s so deep,

Scary thoughts upon me creep,

Tears stream down, I silently weep.

 

Understanding risks and rules,

Vote no for hot tub, yes for pool?

What’s right or wrong when she’s at school?

Xact science needed for this fool!

 

Yet happiness and love prevail,

Zest for life on enormous scale.


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Compliance

“A disposition to yield to the will of others.” Expecting this from a child is like asking wine to flow from my taps. Excellent in theory, but improbable. The children I’ve known well, namely my own, have not been known for their disposition to yield to the will of others. To get through our days with any modicum of sanity, as parents we find ourselves becoming master negotiators. From an early age, children resist. Everything. Whether it’s changing a diaper (there’s nothing like a messy poop to inspire your infant to roll over for the first time), or getting through meal times (‘Simon, please eat your carrot’ translates to ‘Simon, squeal loudly, make funny faces, and throw your food at the dog’), kids know how to push our buttons. Sophia actually asks me where my buttons are, and what colour they are. She thinks they must be blue, because that’s my favourite colour.

One tactic that’s worked well with Sophia is offering options. Would you like to wear the pink shirt or the orange one? Happily, she often enjoys this game and our day moves along, slowly but surely. Simon, on the other hand, prefers to use humour to distract me from my request. He learned to smile when he was only 6 weeks old, and shortly thereafter perfected an endearing giggle. Recently, he had a ‘time-out’ at dinner for throwing food. For lack of a better place to put him, I turned him around to face the wall. He did not see this as a punishment. Of course. He wiggled around flapping his arms. Then he craned his neck around and yelled “I’m an angel!!” Immediately all the adults at the table threw their hands over their faces and starting silently laughing so hard that we all had tears streaming down our cheeks. Simon’s refusal to yield to the will of others has me thankful that he isn’t the one with a medical condition where compliance is necessary.

As many parents know, there are instances where Option A is the only option. For Sophia, she has to do her chest therapy twice every day (four times when she has a cold), and take enzyme pills with all her meals. These are non-negotiables in our house. From temper-tantrums to bossy refusals, Sophia’s tried several delay tactics. My secret: I’m not above ‘incentives’. And something I’ve learned: like wild dogs, children sense fear and desperation. The more frantic I seem, the harder she’ll fight back. I’m trying to work on displaying a calm demeanour, presenting rational and even-tempered requests to get therapy started. Sometimes I feel like I’m taming a black bear. At the end of the day, I do whatever works. She needs her therapy. Thankfully it always gets done. I think about what sort of circus act I might have to perform, or perhaps witness, in order to get Simon to do chest therapy. It’s a good thing that kid’s only a carrier!

As much as I get exasperated by my kid’s antics, I have to remind myself that these traits will get them far as adults. What do we look for in our leaders?  Someone who is strong-willed, assertive, decisive. With maturity comes the ability to be compliant without being a pushover. I will remind myself of this the next time Simon tells me a story about his crayon collection after peeing on the floor.


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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?