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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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.

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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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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?


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Tough Mother!

It’s been a whirlwind of a month. April and May tend to be filled with fundraising activities, public speaking engagements, and Great Strides Walk/Fun Run planning (on top of working part time and caring for 2 young children). After burning out last year, I thought I would relax a bit this year. It turns out that ‘relax’ means doing everything I did before, plus adding in several appearances on TV to launch the Mom of the Year campaign (www.momoftheyear.ca) and promote the Great Strides Walk/Fun Run AND train and compete in the Tough Mudder! Whew. I feel exhausted just writing it. Maybe someone will have to buy me a dictionary next year.

Oh yes, and I also get to watch a bunch of little kids ride their tricycles this morning! A friend of mine’s daughter goes to a local preschool. They decided to choose Cystic Fibrosis Canada as their charity for their annual Trike-A-Thon. This is special to me on a few levels. First, it’s awesome to have my friend’s support. Second, May is Cystic Fibrosis Awareness Month. What a great opportunity to tell parents in Dundas about this disease. Third, Sophia will be entering kindergarten this fall. In the 1960s, most children with cystic fibrosis didn’t live long enough to attend kindergarten. Now, half of those living with cystic fibrosis are expected to live into their 40s and beyond. What progress! I’m so thankful for all the research that has been done in the last 50 years. But I know there is so much more to be done. Sophia will still lead a life filled with chest treatments, pills, and hospital visits unless a cure or effective control is found. Thank you St Mark’s Preschool for increasing the number of tomorrows I share with Sophia!

In that mess of a first paragraph above, I mentioned completing the Tough Mudder. If you recall from my previous post (titled “Tough Mother?”), I shared my motivation for doing this race: “I am healthy. The biggest obstacle I have to face is my weak muscles. I have nothing to complain about. There are thousands of people out there with cystic fibrosis who are struggling to take each breath. I have no excuse not to do this race.” My friends Amy and Aaron Bury encouraged me to enter a team, named ‘Just Breathe,’ and we did just that last weekend. For every step of the 17 kilometres. For every gruelling second of the 22 obstacles designed by the British Special Forces. We breathed. We shivered. We sweated. We struggled. And We Completed It! Thank you Aaron and Amy for coming up with this crazy idea. Team Just Breathe raised almost $1000 for Cystic Fibrosis Canada! As Sophia gets older, I will be proud to share this accomplishment with her. Already she’s amazed by the obstacles I’ve described to her.

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Perhaps one day our whole family will enter a team!

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This weekend we are part of the Great Strides Walk/Fun Run. Our team Zoom Zoom (Just Breathe) has raised almost $32,000 so far this year, making our 5-year total over $125,000!!! Wish us luck as we aim to reach our $40,000 goal by Sunday. We’ve challenged another local team in the “Race to 40K” : http://youtu.be/9D-DMRDiUMs

 

“Volunteering is an act of heroism on a grand scale. And it matters profoundly. It does more than help people beat the odds; it changes the odds.” – Bill Clinton


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Awareness

One of the hardest things in life is remaining non-judgmental. Many of us claim to be completely open-minded in a self-righteous sort of way. “I would never judge a person…” But if we are true to ourselves and actually self-aware, we know how many disapproving thoughts fly through our heads. When a parent carries a screaming child down the grocery store aisle, we think ‘I’m glad I have better control over my own children.’ When a driver cuts us off in traffic, we pick the most salient attribute (car type, age of driver, sex of driver, etc) and make a disparaging comment under our breath. Now, thankfully, most of us keep these thoughts in our heads. Some of us even open our minds to why people behave the way they do. Perhaps that child missed a nap or is coming down with a cold. Maybe the driver is on route to the hospital to visit a sick relative, or perhaps he/she just made a mistake.

I believe that one way to cut down on prejudice is to watch how we label people. Take a few days and listen to your inner commentary. Do you tend to refer to teenagers as ‘punks’, to whiny children as ‘brats’? Do you refer to people by who they are or by what they are? On a more subtle note, is Mr B down the street a cranky old git or is he a man who has led a difficult life? Is my daughter a cystic fibrosis patient, a cystic, a cyster? Or is she a young girl with cystic fibrosis. How would you prefer to be addressed? ‘Person-first’ language is a great rule. We all have complicated lives. We all make mistakes. At some point in our lives we will all battle with illness, whether it’s the sniffles, the stomach flu, or a serious disease. We are all people first.

 

“The first step toward change is awareness…”

Nathaniel Branden


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An Ultimate Success

After a couple of months of planning, we pulled off our 2nd Annual Charity Ultimate Tournament last weekend. My friend TJ is a great ‘ideas’ kind of guy. He approached me in January and suggested we try to make this year’s tournament bigger and better. Last year we had 44 people join our overnight Ultimate tournament (11pm-4am is a tough sell). Even I wasn’t all the keen on staying awake during my prime sleeping hours. This year we decided to try for an all-day tournament. We secured our indoor location, Soccerworld, for March 30th. TJ thought it would be a good idea to try 4 vs 4, and to divide the soccer fields into smaller playing fields. Sounded great to me. Having very little tournament experience, and absolutely no experience with the 4 vs 4 format, I had no idea what I was in for.

We started spreading the word, and in no time we had teams and individuals signing up. We ended up with 14 teams from all over Ontario (London, St Catharines, Hamilton, Toronto, Kitchener-Waterloo, Kingston, Oshawa) and even some brave souls from Buffalo. 145 amazing individuals signed up for our tournament! A 3.5-fold increase from last year. We even had VC Ultimate jump on board and offer a great deal on jerseys. This was turning from a few friends gathering to play Ultimate, to a legitimate tournament!

Two weeks before the event, I found out that my ‘team of volunteers’ who were supposed to be securing grocery store gift cards to pay for the tournament food weren’t having any success. With 2 sick children, a husband organizing a conference and then away at the conference, we had to do some last-minute scrambling. Incredibly, we were able to secure over $300 in gift cards from Fortinos, Metro, Whole Foods, FreshCo, and Sobeys. More than enough to supply a lovely array of bagels, fruit, granola bars, Gatorade, etc.

Thankfully TJ knew what he was in for, and had no trouble working out playing schedules for our Competitive and Recreational divisions. After some last-minute behind-the-scenes stressful moments (timing changes, accommodating individuals and juggling a multitude of scheduling needs), tournament day arrived. It went off without a hitch. Looking at the facility from above, it was a beautiful display of organized chaos (see picture below). Our most spirited team, Inner Ninjas, even arrived with personalized jerseys, swords, bandanas, prizes, and music! I can’t speak for anyone else at the tournament, but I had a great time. I love watching good Ultimate, and I love playing mediocre Ultimate (I bet I’d love being really good at the sport too, but I’m happy where I’m at).

From registration alone, we were able to raise $5000 for Cystic Fibrosis Canada. There are more donations coming in daily from Ultimate players who weren’t able to attend the tournament. Being able to donate funds to vital research is what gives me hope for my daughter Sophia’s future. What an awesome community to be a part of. Thank you Ultimate players. We’ll see you next year for an even bigger tournament!!

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A Loose Spring

Last week, as we welcomed in the Spring season along with flurries and windchills, I felt hopeful for the promise of warmer weather. I know that where I live means that winter usually lasts closer to 6 months than 3, but I have friends who live in the far north of our country and have much chillier weather than that. I also know that come March 20th I have been given license to act like a crazy Canuck. I will wear capri’s even if there’s still snow on the ground. I have retired my winter jacket and will refuse to bring it out again, no matter how far below zero the thermometer drops. The BBQ will get used on every sunny day. I will send my husband outside in a t-shirt. He will have an ice-cold beer in his hand. We will also share this insanity with our children. Last weekend, it was 2 degrees Celsius, but my husband had our daughter out on the trails with her new bike. She looked chilly but happy when she got home. We know that warmer weather is bound to come soon.

Yay Canada (I wouldn’t wanna live anywhere else)!

Happy Spring Everyone!

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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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