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.


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!



Preschool Preparation

For the past 3.5 years I feel like I’ve been sheltering Sophia a bit, especially over the winter months. On the one hand, I would love for her to socialize with other kids all year. On the other hand, if she gets colds then her life becomes very limited. It’s a tough balance to find. Instead of 2 hours of chest therapy each day, this amount doubles.

Here’s a day in the life of Sophia is when she’s got the sniffles:

8-9am: Chest therapy

9-10am: Breakfast

10-11am: Play

11am-noon: Chest therapy

12:00-1pm: Snack/lunch

1-4pm: Nap

4-5pm: Chest therapy

5-6pm: Dinner

6-7pm: Play

7-8pm: Chest therapy

8pm: Snack/bedtime


As you can see, she only has two short play times in the day. It’s very difficult to get out of the house when Sophia is sick. During these weeks, Sophia doesn’t have time to attend any of her programs or have playdates. Neither does Simon.  I find myself wishing I was a few things…

1) Magical. Then my wand could zap the bacteria and virus’ before they reached my kids. I could also make dinner with a swish of my wand. Handy. Maybe I could also wear a cape or a pointy hat or something, and really embarrass my kids.

2) Psychic. I would know which playdates and programs had the fewest sick kids and plan my life around that. I could also win the lottery a few times before anyone got suspicious. If you were nice to me, I could help you win too.

3) Time traveler. I could just avoid winter all-together. I don’t like getting cold anyway. Also, my husband wouldn’t feel sad that he missed out on skiing for another season in a row. Sounds like a win-win.


Since I am stuck being a regular old human, I guess I just have to do what I can… like pack lots of hand sanitizer, educate the teachers/program leaders at the local community centre, talk to my friends before each playdate. Seems like good sense. Not as much fun as being magical though. That would be cool.

Sophia starts sports, art, music, and preschool next week. I’ve loaded up her schedule so we can get an idea of what she really likes doing, and I think she’s been itching to get out of the house more. Her favourite question these days is “And then where are we going?”.

I won’t give up my dreams of having super-human powers, but until I wake up with a cape under my pillow I will just keep doing my best.Image