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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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.