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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Motivation

What drives us? What makes us get up in the morning and accomplish things? Crawl out of bed or jump out of bed?

This is my pep talk. As I start feeling tired and burnt out, I need to remind myself of all the reasons I keep going, and going, and going.  

Love.

That’s an easy one. My love for my kids is what pushes me to keep raising funds and awareness for cystic fibrosis. I want Sophia to have the best life possible. I don’t want her to feel the burden of living with an illness. I want her to be able to do anything and everything she puts her mind to. I want Simon to live without fearing what might happen to his big sister. Love is my most positive driving force. It makes me feel like I’m riding on a big white puffy cloud. Every breath pushes me higher and closer to my goals.

Anxiety.

Not such an easy one to cope with. It can be crippling. Or it can be empowering. The heavy feeling in my chest. My heart racing. My mind buzzing. These could each have the power to stop me in my tracks. And at times, they have. Or I could harness them. What good is a racing heart, if you’re not pushing yourself? If you’re not moving forward? What good is a busy mind if it’s not coming up with new ways to motivate others, to fundraise, to be a more productive person? 

Fear.

I hate this one. It sneaks up on me. It makes me sad. If I embrace it and face it head on, it can make me a stronger person… or so people say. Sometimes I confront fear. Tell it to back off. Sometimes I escape. If I run quickly away from fear, then I can sometimes close in on the next feeling… 

Hope.

Ah, yes. Hope. Hope fills my bucket. The more support we have, the more research pushes forward, the more hope we have. I like it. But I can’t sit around waiting for hope to find me. I look for it in the news releases on breakthroughs in research. I find it in the ever-increasing median age of survival. I breathe it in when I see Sophia racing with her friends.

We all have our reasons for getting out of bed in the morning.

 


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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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Moment in Time

Peacefully asleep, dreaming of warm summer days, dreaming of the day I get to sleep in, dreaming of a hundred things that are just beyond my grasp. Thud-thud-thud-thud-thud…. “wha’s tha’?” I think groggily to myself. One heavy eyelid opens slowly to assess the situation. Little boy silently standing next to my bed, staring at me. After the “creepy, how long has he been there” thought passes through my foggy brain, I think “wow, he’s adorable,” just as he scrambles into my bed and snuggles in beside me. I can see the curl of a smile on his lips as he scrunches his eyes closed. In this moment, the “parent-y” side of me wants to march him back to bed and tell him not to get out until the sun is shining. The “human-y” side of me puts my arms around him and holds him close, curls my mouth into a smile, and scrunches my eyes closed. How many more precious moments like this will I have before he’s “too big” for snuggles? I don’t know, so I’d better hold onto this moment in time.


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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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Summer Road Map

Some people let life happen around them. They are content to sit quietly and learn from other’s mistakes. They are cautious.

Then there are those who make life happen. They need experiences to help them learn. They are not cautious.

Summer vacation started just one week ago. Already Simon has 4 large scrapes on his knees. Some were from running too fast (how do you know how fast you can run until you run too fast?). Some were from riding a 2-wheeler (yes he’s only 3, but did you think that would stop him?). He has 2 gouges on his foot from finding the only bolt sticking out of a swinging bench. He has a gash on his chin, 3 swollen fingers, and a bloody mouth from falling out of a bed (he was sure he could reach the bedside lamp switch).

Simon is a road map to our summer fun.

I’m more than a little scared to think about his teenage years.

Then there’s Sophia. She’s only legitimately worn a band-aid 3 times in her life. If she trips on something she avoids it next time (Simon will practice stepping on said item until he masters his balance and no longer trips). These two kids couldn’t be more different.

And yet they are the best of friends. They can spend hours blowing bubbles and playing at the park.

Happy Summer everyone!


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Sometimes it takes a superhero (aka Happy Mothers Day)

We have recently been inspired in our house by the appearance of a Bat Girl costume. It’s pink and shiny. It has a mask, boots, arm sleeves, and cape. Who could ask for anything more? As each piece is secured in place, you can see, and feel, the transformation- from cute little girl to fierce pink Bat Girl. It’s phenomenal. And adorable. Jumps and twirls become leaps and power kicks. Hands no longer resting by her sides. Arms reaching into the air, fingers pointed to the skies. No longer walking or jogging, but running with great purpose, out to the backyard, onto the trampoline. Sophia starts perfecting her karate-chop-bum-jump-kick. From some primal spot, deep within herself, comes a loud ‘HEE-YAH!’ We are witnessing the birth of a superhero.

As a mom, my life can become many things- hectic, loud, busy, chaotic, overwhelming. Every mom out there knows about the emotional and physical storm that brews just under the surface. In the blink of an eye my life can become sweet, peaceful, joyful. My heart nearly bursts when I overhear my kids professing their love for one another, giggling, whispering, ‘playing nicely.’ The ups and downs can be dizzying at times. Like those days when you look outside to see snow, followed by sunshine, a rainbow, a thunderstorm. It’s easy to get caught up in it all.

Then I look outside to see super Bat Girl flying through the air, and my world is a better place. Sometimes it takes a superhero.

‘HEE-YAH!’ 

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