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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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

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What a week!

As I sit here thinking about how exhausted I am, and how much I am looking forward to sleep, I also feel the need to reflect on my last 9 days. While living them I have felt overwhelmed and dazed. It’s hardly even the beginning of the cold and flu season and I’m already tired of it. I remember feeling this way last year, and the year before, and I always seem to make it through. This year will be okay too. Everyone here has taken their turn battling some sort of flu. Simon, the poor little guy, had it the worst with both a cold and strep. Everyone is now on the mend, thank goodness.

 

I find that I get very self-focused during these times of cold and flu. I endure each hour without a thought for much else. How many times should we do chest physio today? How often will the kids cough and cry during the night? How many hours until I can give them more pain medication? I forget that there’s a world out there that’s pretty awesome. Now that I’m coming out of my stupor, that world is coming into focus. Some great things have happened this week…

Simon was sitting on a rocking Tigger toy. Sophia jumped on it behind him, gave him a hug and said “Hey mommy, this would make a great picture!” I’m glad I still have a vivid memory of that because before I got back with the camera both kids had fallen off and were piled in a heap on the floor.

Today I filled a bucket with water in the backyard for Simon to play with. He was throwing rocks in it and splashing around, having a great time. Oscar, our dog, came trotting over and took a drink from the bucket. Simon clearly thought this was a stellar idea, because immediately he was on all fours with his face in the water. After he took a big breath of water he looked up at me and started laughing.

Watching Sophia and Simon play chasing games is something to behold. They are both ridiculous and brilliant in their tactics. Sophia jogs in a slow circle around the house to give Simon a chance to catch up. Very sweet. Simon, on the other hand, heads in the opposite direction to cut her off before she rounds the bend. Cunning. Sophia moves quietly to sneak up on Simon. Clever. Simon emits a constant sound so that his voice bounces as he runs, and it feels good. Adorable.

I’m ready to face tomorrow. Life is good. Goodnight.


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Thank you Shinerama!

Yesterday I spent the afternoon talking to 1st year students at Wilfrid Laurier University in Waterloo, Ontario. For many, it’s the first time they have lived away from home. This is the time in their lives when they will learn about themselves. They will discover what type of person they are. They will make important decisions about their futures. Whether they decide to remain in a Bachelor of Arts program or switch to Economics will pave the way for future careers. So early in this experience, I had the privilege to speak to them.

You see, WLU, like many universities across Canada, participates in Shinerama. This is a huge fundraiser for Cystic Fibrosis Canada. Nationally last year, they raised over $1 million for Cystic Fibrosis Canada. AMAZING. In order to both educate the 1st year students about cystic fibrosis and motivate them to spend large portions of their orientation week fundraising for us, I got to talk to several groups of students. It was a beautiful experience. The students were engaged. They were listening to my story. They were learning about my little girl- about all that she’s been through and about all that she will face. For me, it was cathartic. I got to share my fears, my hopes, my knowledge, and myself with these strangers.

One of the Shinerama leaders asked me if there was a person or a story that has stuck with me and motivated me. The question was unexpected, and I had to think about it for a bit. Then I looked up at these wonderful students and the answer was clear. It’s the people who have never experienced first-hand what cystic fibrosis means, yet are willing to spend countless hours fundraising for us, that inspire me. They could be sleeping in, getting to know their roommates, figuring out where their classes are. Instead they are running around campus cheering about how they are going to beat CF, washing cars, running BBQs, doing whatever they can for my daughter and the 4000 Canadians with cystic fibrosis. I am left speechless when I think about how awesome these young adults are. It’s easy to imagine why I’M motivated to find a cure, but what keeps THEM coming back year after year to raise funds for cystic fibrosis? In that moment I looked up and into the eyes of the students in that room, and I thanked them. From the bottom of my heart, I thanked them. Their kindness, their time, and their motivation, is what gives me HOPE. Hope for my daughter’s future is what keeps me going.

Thank you Shinerama students for making my daughter’s life longer and happier.