Going the Distance

If you would have told me a year ago, 6 months ago, or even 9 weeks ago I would be lacing up my running shoes 3 times a week religiously and running, I would have laughed in utter disbelief.  Deep inside there would have been no greater wish: the wish to step outside and run.   To breathe in the air around me while one foot after another painted the pavement with steps was literally a dream.

It was something I thought was never going to happen again.  It was something my mind easily thought I could do, but my body forbid.  With any distress my my body was screaming for oxygen.  Every cell was burning with starvation, and as much as I tried to drink in oxygen my body could not take a deep enough breath to squelch its hunger.  How could I possibly think of running when just 3 months ago I could barely walk up the stairs without gasping for air?

Track Days

Life is pretty miraculous.  The moment I blew a 55% in July, I promised myself I would do even more to fight CF and its ever increasing hold on my life.  I knew again, CF would come at me with a vengeance, and when that happened my body was going to be stronger than ever.  What did I do? I dug my running shoes out of the closet.  I knew this was going to be a long road, and a difficult one.  What my mind wanted me to do and what my body would allow, would be two different things.  I also come from a family of very good track sprinters, which would be a natural tendency I have always battled.  I knew 100 meters wasn't going to build the strength or endurance I needed to fight my future battles, I needed to be able to go the distance.  I needed to start slow and remain steady.

Road Blocks
I knew this wasn't going to be easy.  There were lots of things I had to consider; the first being my blood oxygen level.  With vigorous, steady activity my oxygen level has a tendency to drop below 90 causing Hypoxia: low blood oxygen.  Side effects of Hypoxia are things such as light headedness, headaches, fatigue, nausea, and confusion.  So, what did I do? I bought an oximeter to monitor my SAT level when I would run.  I needed to know how low it was dropping and how far I could push my body before something dangerous happened. The first couple weeks of running my oxygen level would drop to around 82-84, but now in the last 2 weeks it hasn't dropped below 89. The second thing I needed to consider was just how far to push my body.  Pushing it too far would result in exhaustion which could bring on an exacerbation and start a downward spiral.  Finding the balance between pushing myself and exhaustion has always been difficult for me, and this was going to be no exception.  Especially, when I would be adding it on top of my teaching and gradate school schedules.  Third, I needed to make a plan.   With the help of a fellow CFer, I had a plan in which I could begin to tackle, one step at a time.


Now or Never. 
So, I did it.  I knew it was now or never.  I laced up my shoes, grabbed my oximeter, and charted my course.  Did my lungs and body protest with every step? Did it hurt like hell? Yes, but I knew with every labored breath I was alive.  It may have only been 30 seconds, but it felt like a marathon.  And when I finished my first day of walking 8 minutes/walking 30 seconds three times I felt like I had conquered death.  I felt as if CF had lost the battle.  Tears streamed down my face as I thought I would never experience running again.  Today, I am up to running 60 seconds straight three times, with 4 minutes of walking in between.  It's taking far longer than I ever imagined for my body to work up endurance and stamina, but it's a journey in which I must master patience. This isn't a sprint, it's about going the distance.  I continue to push myself while trying to keep from exhausting myself.  The longest I've done? 1 minute 20 seconds continuous.  I know some might be laughing at that, but to me it's utterly beautiful.  It's a miracle.  To be honest, some days feel pretty good and I feel nothing could stop me, and then some days feel pretty terrible and my body screams with every fiber of its being at me to stop. But each day is such a gift.  I am running.  With every step I am fighting.

I know there will come a day again when I won't be able to run, that my body will forbid it.  It might be tomorrow, but today is not the day.  Even while battling a terrible cold, and lungs that seem to be protesting every breath I take, I will run today.  The best part of running? The cheering squad that greets me at the door. With every breath that touches my lips and fills my lungs, I am thankful. Love to you all.

Let's go running together.  Seriously.

Endless Possibilty

Dreams. We all have them.  We have them not only for ourselves, but for others as well. There is no greater gift than having someone believe in you, I mean really, truly believe in you: for someone to know and believe in the promise that dwells within you, and to dream of all possibility.  It can be parents who first cultivate those dreams and wishes for you, even before your first cries are shared with the world.  Before they even knew you, they knew all the great wonder that lied ahead for you.  From the moment they held you in their arms, they knew your life held beautiful possibility.

Think about your own children if you have them, or just merely imagine what it would be like for a moment.  Think about that moment you held your child for the first time, that moment you cradled them in your arms and knew there was nothing more beautiful in the world to you. You were filled with insurmountable joy.  You had dreams not only for them, but for yourself as well.  Dreams of Christmas mornings, teaching them how to ride a bide, how to bake grandma's cookies, and dreams of sharing your own life experiences with them.  You knew they were going to do great things.  As you looked down at them for the first time, nothing seemed impossible. 

Two Words

But what if there were two words that changed everything?   What if those two words shattered all your dreams and hope for the future? Those two words?  Cystic Fibrosis.  Suddenly, dreams for the future were filled with doctor visits, hospitals, infection control, treatments, insurance calls, pills, and a shortened life expectancy. Worry replaced dreams, and the future was put on hold.  Suddenly, endless possibility had a shelf life. 

It's hard for even myself to imagine being a parent and having all of this happen.  It's one thing for it to be my own life and not know any better, but it's another for it to be happening to someone else.  I simply can't imagine someone telling me that my child, this tiny, fragile, beautiful, baby born of a future wrought with endless possibility, suddenly has a life's journey charted upon different stars. 

Even though that life may be charted upon different stars, it is just as beautiful.  It may be different than what had been dreamt for them, but nonetheless it is just as stunningly marvelous.  With that said, no parent should ever have to hear those two words: Cystic Fibrosis.  No parent should ever have to watch their child fight for every breath, to be a slave to pills, hospitals, and treatments, or even have to say goodbye.  

Hope for Tomorrow

These are the beautiful faces of CF.  Behind every face lies countless dreams and hopes for tomorrow.  Each beautiful life is filled with endless possibility.  These faces are someone's daughter, son, grandchild, nephew, and friend.  

Jennica, 4 years old.
Diagnosed at 12 days old.
She wants to be a "Best Friend" when she grows up.
What is CF to Jennica? "Going to the doctor."
She loves eating donuts and swinging on her swing set.

Dannika, 9 years old. 

Diagnosed at the age of 6. 

What is CF to Dannika? 

"It's a disease, but you can't catch it from me. You get it from your parents. Your mom has to have one half of the moon and your dad has to have the other part of the moon and if you have CF when you are born it means you got both halves of the moon. It's kind of like breathing through a straw. Most people with CF have to take enzymes before they eat, but I'm lucky and don't have to yet. Sometimes I cough a lot and if I catch germs from someone it's harder for me to fight it and I end up in the hospital. 

It's not so horrible to have CF. Some people say it is, but they just see it in a different way. If you have CF just know that God made you special and He doesn't make mistakes."

Tarryn, 7 years old.

Diagnosed at 4 months old.  

When asked what CF means she said, "having treatments to get the mucus out of my lungs and taking pills".  She wants to be a doctor or a dentist when she grows up.

Collins,7 months old.

Diagnosed at 12 days old. 

Likes: Carrots and peaches, Mickey Mouse Clubhouse, my binki and blankie. I'm

almost ready to crawl!

Kole, 5 years old.

Diagnosed at 2 weeks old.

Wants to be a football player when he grows up and play for the BEARS. 

He loves to ride bike, go swimming, play any ball.  He loves legos. Spending time with his brother.  

What he says about CF: "It's a disease that is on his lungs and it make it hard for me to play for a long time.  I can't wait to find a cure."   He wants to know at what age he can stop doing the vest.  

Fischer, Almost 4 years old.

Diagonised at his first well-baby care checkup.

What is cystic fibrosis?

"Cystic fibrosis is doing treatments."

Fischer likes to play, exercise, play with his friends and eat lunch at Beth's house.

He wants to be a lifeguard.  They watch people swim.

 

Spencer, 2.5 years old.

Diagnosed at 10 days via the newborn screening.

He is an active little guy who loves to run and play with his older brother. 

Reese, 5 years old 

Diagnosed at 10 day old.

She loves the color purple and is obsessed with anything Wizard of Oz. Her favorite food is edamame.  She loves being a big sister to her brother Sammy and ADORES spending time with her little friends.  Reese just started Kindergarten and wants to be a Paleontologist when she grows up. 

You can be a part of possibility.  You can help make dreams a reality.  You can believe in the beauty of a child's dreams.  Become a part of the CF family and help us fight for another breath: for those beautiful children, their families, and their friends. We are so close to a cure.  Be a part of our next big event to benefit CF drug research and development: giving each of us another chance at tomorrow and to live out our dreams. 

Corks & Kegs for CF

Friday, October 1O, 2O14

The District

Sioux Falls, SD

6 pm - midnight

Tickets available here: Corks & Kegs for CF

It's going to be a fantastic night of great wine, beer, food, and live music.  There will also be a Live and Silent Auction with fantastic items to bid upon.  Please join me!

I am living proof that there is a future, that tomorrow looks more beautiful than yesterday. That CF cannot stop me from believing in the beauty of my own dreams, nor can it extinguish the hope of those who first believed in me and continue to. For each of you, I am so thankful. Love to you all.

Tell someone you believe in them. 

A very special thank you to all the families and kids who helped make this post possible.

Brave Like YOU

[Blog entry created by Lisa Yager]

Please tell me you read/sang "brave like Ashley" to the tune of "Moves like Jagger" by Maroon 5. Oh, you didn't? Just me? Okay...

If you've been reading Ashley's blog regularly or have the pleasure to know her personally, you are aware that her journey with CF has been marked by great strength, courage, and joy. In sum, matchless bravery. She truly breathes bravely.

I have always coveted Ashley's bravery. Perhaps you have, too. I considered myself weak in comparison to her seemingly limitless courage and overwhelming power to fight CF. Bravery is her default and I envied this trait in my dear friend. Don't we all want to be brave like Ashley? (You sang it that time, didn't you? Yes!)

I assumed I would never possess such bravery and strength. I  assumed I was weak and less capable of handling life's bleaker moments and harsher challenges. I could never be brave like Ashley.

I was wrong.

Like Ashley, I have kept a secret from the world.

Infertility and the battle to conceive a child is a real and often silent struggle for many. My husband and I kept this chapter in our lives a tightly held secret . The secret first began to elicit surprise and pure joy when we told our closest friends and family that we were expecting a child. In time, the secret became a copping mechanism to hide the associated shame and frustration. The emotional toll was often unbearable. I didn't feel brave. Weakness prevailed as each passing month brought a negative pregnancy test. Strength and bravery seemed out of reach.

And then, it arrived.

A positive pregnancy test. Blessed (yet, unpleasant) pregnancy symptoms followed.

And then, it ended. Just shy of fourteen weeks pregnant, after two successful doctor's visits, I lost the baby.

The unexpected and tragic end of my pregnancy was traumatizing. Yet, through the physical pain and dreadful details, I found an unexpected amount of courage and strength. Suddenly, I was brave.

I am still processing this journey; the physical and emotional pain are still far too real. Grief has not begun. Yet, one item is for certain. I am brave. Far braver than I ever imagined. I choose to believe that this strength has always been inside of me, just waiting to be found and applied.

You are brave, too. Even when weakness prevails and the world seems dark, you can be brave.

Perhaps bravery comes when we need it most. Whether we are fighting daily to protect our body from the dangers of CF, dealing with infertility and miscarriage, or just struggling with the ups and downs of life, we are all brave. Braver than we ever dreamed possible.

When the physical and emotional wounds have healed, the journey to conceive will begin again. And I will face it with bravery. Will it be easy? No. Will this bravery always come naturally? No. Am I scared beyond belief? Yes. But, I have found an unknown strength and the bravery to tackle whatever may come.

You can too. You can be brave like.......  You.

Have you found your inner bravery?

Note: Infertility and miscarriage impact many. This experience is my own.

Fishing for Hope

Take a look around you. Really, do it.  Look at all the generosity and kindness that is happening before your very eyes.  Think about your day, your week, your year.  Think of all the generosity and kindness you have been shown, and think about all the goodness and generosity you have shown to others.  Are you a living, breathing part of that generosity?

 We often times can be so quick to observe the pessimism and hatred whirling around us, that all the generosity and good becomes hidden.  Or, we become so desensitized to continual acts of goodness and generosity that we neglect just how beautiful and impactful each of those moments continue to be.  We begin to take those moments for granted. But it's always there, it's always around us.  We have those people in our lives that show us unconditional generosity: that continually show us goodness.   They fill each and every breath of life with goodness.

Helpless
I cannot say it enough: I am so incredibly lucky to have such generous and kind people in my life: dear friends, family, caregivers, and mere strangers.   I have been shown so much kindness and selfless generosity that it still brings me to tears thinking of it.

One of the most difficult things for people to do is to stand by and watch someone they love fight for their life: to watch their body be destroyed, to have years stolen, and dreams ruined.  A person can feel so very helpless.  What is there to do when all you want is to fight the battle for them? To bear some of the load? To save them?

One of the hardest things is to see how CF has impacted my parents: what it has done to them, and how they've learned to cope with the harsh realities they've already witnessed, and the realities of their last living child's future. Their generosity and love to me have always been unconditional, and it's a gift that I will never be able to adequately repay.  They've always made sure I am well taken care of.  I am so truly lucky for that, but I know all they really want to give me is a chance at another breath, the pain free life they had dreamed for me, and ultimately a cure for CF. What can they give me?  A voice.  Hope. The strength and support to fight.  Love.


Giving Hope
Years ago my dad started a fishing tournament to benefit The Cystic Fibrosis Foundation. He had already lost one child from the devastating disease, and was determined not to lose another. That was 13 years ago.  In just 13 years, he has raised over $66,000 for the CF foundation, benefitting research for new drug development and a cure.  What an amazing thing it has become.  It started with just 20 some teams the very first year, and this year it has grown to have the potential for 70 teams.   There is nothing I love more than watching the boats go out in the morning: it is such a magnificent sight. What amazes me most about this event?  The people that come out year after year to show their support.  It has become something that so many have come to look forward to and be a part of every year. Thinking about it makes me super emotional.  These people have become an extension of my family, and I am so thankful for each of them.  It's so overwhelming to think about the army I have fighting along side of me.  What's even more overwhelming and humbling is knowing these people aren't there just for me and the fight against CF, but to support my family as well.  The generosity and kindness of people is so incredibly powerful.

So that special weekend is approaching.  Every year I am at a loss for words.  How do I thank everyone?  How can I show them how truly special their presence and support really are?  How do I put into words the impact their generosity and kindness have made on my life?   Most of all, how do I thank my dad for doing such a selfless event?  For the hours of work that go into putting an event like this together?   For showing me what an impact generosity and kindness can have?  But most of all, for tirelessly trying to save my life?  There will never be enough words, just tears of gratitude and love.

I have been shown so much generosity and kindness in my life, and I can only hope to reflect that generosity in the way I live each day: one brave breath at a time.  Love to you all.

Stop and take a moment to realize just how much generosity and kindness is in your life. 

13th Annual Cystic Fibrosis Walleye Classic

Friday, October 3, 2O14
      - 6:3O Benefit Dinner at the Eagles Club in   Bemidji, MN
      - Live Auction

Saturday, October 4, 2O14
      - Fishing Tournament at Break on the Lake Resort, Cass Lake, MN
      - Live music that evening.


For more information please click on the link: CF Walleye Classic or call 8OO-443-51O1.

Seeds

Life can change in the flash of a moment.  You close your eyes for just an instant, and awaken to a life that is unrecognizable.   What we do in those moments defines who we are, how we choose to live, how we love, and how we look at the future.

Maybe it's a diagnosis, an unexpected loss of someone you love, a divorce, a forced change of plans, or just the sudden realization that your life isn't what you had imagined it to be.   At some point in our lives we all will experience a moment that will shake us to our core, that will make us question what we believe, and the hope we have for the future.

Finding Purpose
Moments like this, whether happening to us or someone we love, stop us and force us to evaluate our lives and what is truly meaningful.  We begin to consciously live our lives to the fullest each and every day, taking every ounce of goodness life is willing to offer.  We become aware of the beauty that surrounds our lives:  the ticking of a clock on a wall, the sound of kids at recess a fews blocks away, the stillness of a late summer night. We suddenly don't have time for the trivial or the negative: we want to surround ourselves with positivity and people we care about.  We cherish every meaningful conversation, every act of kindness shown to us, each ray of sun that hits our face, and every person that fills our lives with joy. We realize that life is a gift that is far too short to be living without purpose.  That purpose?  It's something rooted in joy that is as unique and individualized as the person within whom it lives.

For all those facing any adversity, for those who awoke this morning and do not recognize the face that greets them in the mirror, for those who are missing someone they have lost, and for all those who face a battle greater than they think they are capable of fighting, life may seem riddled with despair, but I promise you that even within the darkest times there is still an ounce of joy that dwells deep within.   What do I mean? Within those moments that have changed the course of our lives, lives a small seed of joy.  It's in that joy we find the strength and purpose for life.  It's through that adversity we realize just how joyful our lives can be, and how very strong we are.  It's in that joy that we will live gratefully and love deeply, never taking a single moment for granted.

Endless Joy
I do not know what tomorrow will bring, nor can I control it, but I do know that the sun will rise.  I admit I live in fear of what tomorrow may hold, but I also choose to live in the hope it brings. I have also learned that amazing things in life can happen in moments of adversity.  One never knows where life will lead. Take this blog for example.  Never in a million years could I have imagined my life the way it is today, and the reaction my mere ramblings have caused not only in myself, but to others as well.  I am still in disbelief when looking ahead to the future and the amazing possibilities that lie ahead.  Is my life perfect?  Far from it, but it's sure a beautiful one and it holds so much joy behind every corner.  In all my life I choose to laugh freely, to love deeply, share kindness endlessly, and live gratefully in each moment.   Our lives can change in the blink of an eye, but in every moment I choose to live rooted in joy.  Love to you all.

Find your joy in every moment.