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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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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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.