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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Fears and Wishes

Day after day, we’re doing ‘just fine.’

Following routines keeps us in line.

Then one day a blip in the static,

My thoughts go awry, my emotions erratic.

 

I thought I was living far away from the ledge,

But as it turns out my toe’s on the edge.

One health scare turned my head around,

I’m shocked to find no sign of the ground.

 

Proud to be tough, resilient, and stoic,

Right now I’m feeling miles from heroic.

An errant thought leads to one small tear,

Leads to many more, and more, I fear.

 

If only I had an impenetrable shield,

A sword of immunity that I could wield.

Superhero strength to protect my young,

A hide of leather that can’t get stung.

 

But, alas, we are human, limitations and all.

The best we can do is try not to fall.

And if we do, then we try to land first,

And protect our children from getting the worst.

 

Turn ourselves around and rally our powers,

Soak in the warmth and smell the flowers.

Climb back up that hill, take a big step in,

Set up a sturdy camp for the next whirlwind.


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Let’s.

Throughout the last 7 years I have experienced many different things. I’ve worn many different hats. I’ve experienced many different emotions. I’ve been many different people.

 I believe that there’s always a balance in life. With every down-swing, there will eventually be an up-swing. Maybe I’ve watched too many episodes of Seinfeld, but I believe in Even Steven. Maybe it’s just hopeless optimism. It’s what gets me through the day.

This year I experienced new challenges trying to juggle work, volunteering, life, and happiness. With the never-ending support of my husband, who sails on my ship with me, through good weather and bad, I feel like I can face anything.

I’ve had the opportunity to do some fun things this year. I can’t say they were on my bucket list per se, but they were fun. I got to see Maestro Fresh Wes at a beer festival. I got to climb a mountain next to my kids. I got to wear a tiara (this is a big deal for a girl who climbed trees and played with M.U.S.C.L.E. Men as a child). I got to be part of a professional photo shoot. I got to go night swimming.

I wear many hats. Sometimes they wear me out, but I will continue to wear them. In life, we can control a great many things, and these are the things I will try to influence. The rest are out of our control, so I’ll try not to worry about them. Let’s stay healthy, let’s be happy, let’s be successful, let’s help find a cure.

 


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My Darling

When you were inside me, my little ladybug,

You’d roll and kick, push and tug.

When I was near others I’d always be strong,

And pray to God the statistics were wrong.

Tell me darling, that it’s gonna be alright.

Hug me darling, give me a kiss goodnight.

 

Then I’d drive around, tears falling down my face,

What’s happening inside you that I can’t replace?

I want to fix you so that you can stay,

Helplessness takes hold, takes my breath away.

Tell me darling, that it’s gonna be alright.

Hug me darling, give me a kiss goodnight.

 

‘She’s the picture of health,’ people say about you,

My heart squeezes tightly, hoping it’s true.

All I can do, is everything I can do,

And hope it’s enough to make this day through.

Tell me darling, that it’s gonna be alright.

Hug me darling, give me a kiss goodnight.

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The Space-time Continuum

The days really do seem to be passing by fast. I’m pretty sure I haven’t aged in the past 15 years, so I can’t quite believe that in that time I’ve completed an Undergrad degree, a Masters degree, met and married the man of my dreams, and had 2 kids… who are already 5 and 3. The only hint of my increasing age is a few wrinkles, a few extra pounds, a few extra months to get over injuries, and this rapidly aging family of mine.

Seriously, how do I slow down time? Sophia has a wiggly tooth. I think I’m probably the only parent EVER to have a child with her first wiggly tooth, and I’m SO excited about it. Something about shedding temporary childhood and entering permanent adulthood. Until I experienced this excitement first-hand, I would have thought that I would be, at best, a little grossed out by bloody teeth falling out and being replaced by presents under a pillow.

As if that wasn’t enough excitement, Sophia also started riding a bike without training wheels! Away she goes, independently riding down the street, wind blowing her hair, big smiles and a few scraped up knees and elbows.

As the years go by, all I can hope is that the thread of love that binds us together never gets frayed or worn.

I’m going to go and give her a big hug.


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Creature in the Night

Once upon a time, there lived a fairly unremarkable family. Mom, dad, 2 kids, and a dog. They went about their business in the usual fashion. Household chores, work, school, extracurricular activities, 3 square meals per day. The morning sun peaked through the front window, beaming onto shiny hair and sparkling eyes. The ticking clock marked the time, keeping them on schedule.

Through winter months, mom dreams of the warm breeze and green grass. Dad dreams of powder-covered slopes. The children dream of snowmen and snowball fights. Days pass and days get longer. Their imaginations occupy the drearier moments of each passing hour.

For children, imaginations can take you anywhere. Puppies are queens, ponies are princesses, and they’re going to the ball. Blankets can talk to us and give us hugs. Monkeys make funny faces and share their toys with us. Imaginations can also get carried away. To dark places with scary music. The age of 2.5 has brought creepiness into our home.

When Sophia was 2.5, she heard noises.  With her pale skin and messy hair, she would look at me with haunted eyes and whisper ‘what’s that noise coming from behind the wall?’ At night she would wake up scared and crying, eyeing the walls suspiciously. Aside from hoping that my child wasn’t possessed, I hoped she would learn to sleep through the night again. We spent several months tired and bleary-eyed.

Simon, just now 2.5, has started telling me about ‘the ghosts’ in his room. Upon further questioning, I find that they are ‘bad, not good’ ghosts, and that there are several of them travelling through his room at any given moment. Sometimes they hide in his closet, come down from the attic, and sleep under his bed. With an expansive and dramatic sweep of his arm, he says ‘don’t you see ALL the scary ghosts, mommy?’

Sigh. I guess we all have our inner demons and flights of fancy to contend with. Sometimes I think I hear sounds too. And they wake me up. In my half-lucid state, I may believe it’s a noise coming from behind the wall. I may see bad ghosts floating behind my heavy-lidded eyes. This sound makes me feel panicky. My heart races when I hear it. Anxiety stabs me awake. When I strain to hear it again, it’s gone, and I’m left with my husband’s snoring. My ‘scary sound’ is not coming from something paranormal. It’s from something strangely normal in our house. And it’s coming from the next room. Sometimes my imagination becomes my reality. And I’d rather it stay hidden behind the wall. 


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Keeping Perspective

I often get caught up in the hustle and bustle of life. I’d like to say it’s just around Christmas time, when most of the world seems to get a little frantic. In reality, I keep waiting for a break. I thought it would happen after Great Strides this year. But then the summer took hold- lots of illnesses, aging about 3 decades (got shingles and “broke” my hip), added into a full schedule of activities for the kids. Then of course Shinerama time, and passing on the Mom of the Year “torch” made the fall busy. Then the winter sneaks in and brings germs and hours of daily treatments for Sophia, sleepless nights, and worry.

But I digress. I know I’m not alone. We all feel busy. What I’m trying to say is that I think I’ve been focusing on the wrong things. I shouldn’t be waiting for a break, struggling to get through. I should be enjoying the little moments that happen each and every day. They’re there. Between cheerleading the kids to eat their breakfasts and get dressed before school, and negotiating ever-lengthening bedtime routines, there are some golden moments.

Yesterday when I was doing the dishes, I heard some (very) loud music coming from the basement. When I glanced down the stairs I saw Sophia uncontrollably giggling to Simon’s modified chicken dance, followed by “I love you Simey-doodle.” Golden.

We took the kids to see Santa and Mrs Claus a couple of weeks ago. When asked what they’d like for Christmas, Sophia said “lots of puppies” and Simon said “beautiful flowers.” At first I felt cynical about Simon’s statement. Our house has a lot more construction vehicles (at his request) than flowers. He’s a charmer, and I wouldn’t put it past him to know just what Mrs Claus needed to hear to keep her coming back each year. Upon further questioning though, he seems to truly love flowers. The simplicity and beauty of these Christmas wishes makes my heart melt. We should all wish for lots of puppies and beautiful flowers. Golden.

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For the past few days, Sophia has had a “new home.” She chose a My Little Pony tent from a table of gifts and has slept in it every night since. She gathers about 30 of her closest stuffed animals (aka “guys”), 2 pillows, 2 blankets, and crams herself in there. I think it’s meant to comfortably hold 2 small children sitting and playing. Every evening when I tiptoe in to turn off her bedside lamp, I can’t help but smile at the pile of Sophia items in the tent. Golden.

I hope that, throughout this busy and hectic season, you all take a moment to find the golden moments in your day. Happy holidays!


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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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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.