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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Happy Holidays

Recently my aunt went through a dramatic medical event. She experienced a “thunder clap” headache (just by the term you can imagine how that must feel), and immediately went to the ER. After a scary few hours, during which time she was sent home with Tylenol, went back to ER, was sent via ambulance to another ER 1.5 hours away, and then airlifted to a major city, she was finally diagnosed with a brain aneurysm. The neuro surgery team took her immediately into the operating room, and 6 hours later had managed to crack her head open, slow the bleeding and staple her head back together. Being no neuro surgeon myself, that’s how I imagine it all went down. I can’t even fathom how much skill and knowledge is required to perform a surgery like that.

Being from a small family, we are aware of the importance of staying together. As soon as my aunt called my mom from the ER, she had booked a flight and was on her way across the country to meet my aunt. My brother, an ER physician himself, was on the next plane to meet up with my aunt and help act as interpreter and advocate. I also managed to find childcare (thank you Jason, Elsie, Nathan, and Katie) and was on my way within a couple of days. My aunt is an incredibly strong woman, and an incredibly lucky one too. Even after getting the run-around in her home town, she still went into surgery neurologically intact. She came out of it the same way too. Nevertheless I was worried and spent my flight across the country hoping for the best. I was definitely met with the best- a smile and hug from my aunt as soon as I got to the hospital.

The next few days were spent at the hospital with my aunt and my mom. We chatted, played games, sat quietly. My aunt had good moments and not-so-good moments during that time. It’s always hard to see someone you love suffering, but we all knew that she was on the mend. I think we’ll even look back on those days with a smile… from dealing with noisy roommates (that’s putting it mildly) to dealing the cards, we were together as a family and that’s what mattered most. My aunt’s partner drove 15 hours to pick her up. He visited each day, and was ready to drive her back as soon as he got the green light from the doctors. They’ll have to take their time going home, and my aunt will need to take it easy for several weeks. Really, Auntie Janet, if you wanted to hang out with us and take a break from housework, you just had to ask!

While this might not have been the way I envisioned ‘spending the holidays with family,’ I am so happy to have had the chance to see my aunt.

Merry Christmas everyone- may you enjoy and cherish the time you spend with your families!

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Living a Legacy

Like Simon’s super-indelible-marker-scribbling on the wall, we leave permanent marks on all those that we meet. When we choose to treat someone a certain way, that choice is important.

When you have a child who lives with a fatal illness, you don’t think about what to leave them once you’re gone. Instead you focus on how you can leave an impact while you’re both living. Cystic fibrosis leaves a big question mark on Sophia’s life. With a focus on increasing our number of tomorrows spent together, I began to ponder the idea of legacy.

At the Mom of the Year weekend in Toronto, all of us moms sat down at breakfast and wrote down thoughts about where we came from- how each block built us up into the tower we are. Sometimes that tower is so strong, nothing can touch it. Other times a light breeze causes pieces to break off and come tumbling to the ground. What did we learn from our own parents, and what are we teaching our children? How do our actions impact the strength of our children’s towers?

The other day I came across the concept of living a legacy. These are the actions and values that I live “into” each day. I value hard work. I value kindness. I always want to be someone my children can come to- when they’re happy, when they’re sad, when they’re proud, when they’re scared. I want my children to be confident, yet humble. I want them not only to feel loved, but also know how to love. These values and actions are important to me. I hope they build a strong foundation for my children.

Instead of just leaving my legacy, I am living my legacy.


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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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Sibling Rivalry

When my husband and I were thinking about having a second child, there were many things we had to consider. The hardest part was deciding ‘how’ to have a child… now, no need to send me to Dr Ruth, we figured it out the first time. Unfortunately, knowing that we are both carriers for cystic fibrosis changed the playing field. For every pregnancy, there’s a 25% chance our child will be born with cystic fibrosis. To us, this seemed like a big risk- not one we wanted to take. We decided to go the route of in vitro fertilization. The experts then take one cell from each embryo and test it for cystic fibrosis, using what they call ‘pre-implantation genetic diagnosis,’ or PGD. To say that this technology blows my mind is an understatement. After figuring out the ‘how,’ we were ecstatic to welcome the ‘who,’ Simon, into our family 9 months later.

During the pregnancy I wondered if Sophia would ask why her little brother didn’t have to take enzymes or do ‘zoomies’ (our name for chest therapy). I hoped that she wouldn’t feel singled out. I didn’t want her to feel burdened by all the extra therapy she had to do. As the days and months passed I realized how wrong I was. Sophia didn’t feel burdened by her therapy. It was our time to cuddle and bond. She didn’t feel singled out. She felt loved. It was Simon who was struggling. As proficient as he has become at playing by himself, he still feels left out. ¬†Sometimes he’ll look at Sophia and I and start crying. He’ll try to pull himself up onto the couch to be with us. Sophia has become okay with having her little brother share in the cuddling part of ‘zoomies.’ I explained to her that Simon needs snuggle time too. Sophia understood.

Life always throws curve-balls, yet I was still caught off guard. I was prepared to explain to Sophia why Simon was ‘lucky’ enough not to need chest therapy. Instead I am explaining to her why he wishes he did. I know that their relationship will always be dynamic. I will try to stop building expectations, as they will probably keep tumbling down. Thank you Sophia and Simon, for keeping me on my toes, and teaching me something new every day!