Living Memory

The Fall season is at its prime.  Everywhere I look there are hues of beautiful yellows, reds, and oranges. You can’t help but be awe struck by the beauty of the season and its ability to be so vibrant.  

The past few weeks in South Dakota have been some of the most beautiful: endless days of sun-kissed perfection bookended by cool, crisp nights and mornings.  I wish they would never end.


I am so thankful for these warm days where the sun still kisses my cheeks and I am reminded of the beauty in which surrounds me.  The explosion of Fall color is a beautiful finale to the song that is the cycle of life.  Soon, the trees will drop their leaves, left barren.   When the wind whips through their branches there will no longer be the sound of rustling leaves, but only silence.   Rays of sun upon my face will be replaced with the bite of cold air as I anxiously await the first glimpses of Spring and signs of new life.  As for today, I will be grateful for Fall's embracing beauty and the brilliance of life it represents.   

A Life Lived

Sixteen years ago, at the age of 17, my brother, Nate, died of complications associated with Cystic Fibrosis.   It’s funny how days stick in your mind no matter how many years pass between.  If I close my eyes I can suddenly become that 11 year old girl again.  I can see the color of the leaves on the trees, the faces of my parents, the frost on the ground as we stood next to his grave, the sun trying to pierce through the heavy clouds, and I can feel the crispness of the Fall wind against my face.  I am filled with the same questions, fears, and guilt 16 years later.

Those years I had with Nate seem like a completely different life: they almost don’t seem real.  For a long time I pretended those years didn’t exist.  I still do to a certain degree: always keeping memories, questions, and emotions at a safe, manageable distance.   Maybe it has always been a way for me to live conveniently in denial about my own reality, and the deep connection I will forever have with Nate and CF.  It still pains me to think about those years: what I saw, the suffering, the guilt I still have in regards to my own health/life in comparison to his, and witnessing the deep heartache of my parents.

A Living Memory

As much as I have tried to silence that part of my life, it is ever present.  Nate is ever present.  His memory and life continue to live on long after he took his last breath.   When I look in the mirror I can’t help but see him staring back at me through my own eyes.  He is alive in the way I smile, my laugh, and in each breath I feel pass through my lips.  

The memory of Nate is still alive for so many people.  He touched the lives of so many: more than I ever could have realized.  Little did I know when I was a child just how lucky I was to have all those people in my life as well.   It's been incredible to realize how those who so impacted Nate's life have also shaped my life through the years: the nurses, the respiratory therapists, child life specialists, and our doctor who became such a vital part of our family.  One of the most amazing things about this blog?  Hearing the stories of Nate and how he impacted the lives of so many people: how his memory continues to live on.  It's been incredible for me to witness another side to the life I thought I knew so well: to hear and look at his life through the eyes of those whole loved him so, and to gain an understanding other than mine as an eleven year old child.

I often find myself playing with the "ifs" of life: wondering what my life would be like if he were still alive, if CF had never entered our world.  Would we be close?  What would holidays look like?  Would he be in love?  Have children? What would our childhood have looked like without CF?  How differently would both our lives have played out?  How different would we be as people?  What if he had been given the same life saving chances that I have been given?  Would that have made any difference? Will my own journey with CF follow his same path?

The Beauty

There is beauty in every life: every breath that has been breathed.  The leaves may soon fall, exhaling their last vibrant breath as winter steals their radiance, but the memory of their colorful Fall beauty will live on, having touched each of us. The magnificence of each color is a reminder of the brilliance of our own life, lives of those we love, and the memory of those we've lost along our journey: each different, but each just as beautiful.  I am thankful for these sun stained days, the vibrant colors of Fall, its finality, the gentle reminder of just how beautiful life is,  and to passionately love every breath.  Love to you all.

Here's to you, Nate. 
Whose beautiful memory still lives on in you?

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.

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.

The Birthplace of Joy

[Blog entry created by Jayna Fitzsimmons]

Ashley and I have been friends for a really long time, and we have one of the closest, most enduring friendships I have ever experienced.  We met in high school and became instant best friends—pretty much inseparable, instant sisters.  In case you have doubts, here is a photo from an actual family picture session my family did in 2003. If you can look past the stellar posing, you’ll note the fourth sister.    

 

So foxy.  Take it all in.

I am honored to be guest blogging for AB today, and so I want to take this chance to share a little Friday gratitude for the gift that Ashley’s writing on Breathe Bravely has been to our friendship and how Ashley’s courage in embracing vulnerability has been a gift to all of us.

Ashley and I are both teaching artists.  I teach theatre at Augustana College here in Sioux Falls, and, between USD and her home studio, Ashley teaches music to many students of all ages.  It’s usually not too long into one of our frequent dinner or lunch dates that the “teacher talk” begins.  After a few whisky drinks have been consumed and our husbands have faded into the distance--they’ve become very close J--conversation usually meanders around to our shared passion, and sometimes, the attached frustrations. 

“This student has so much promise,” one of us will say, “but she’s holding back in performance!” 

“The potential is there,” the other will lament, “but he seems afraid to step outside of his comfort zone.”

When our train stops at Commiseration Station, believe me, we swap strategies.

Sorry/not sorry, gentlemen.

In the performing arts, forward progress is tricky in that it can sometimes feel an awful lot like failure.  We have to be vulnerable in order to grow, which can feel scary and unpleasant and like we need to find the nearest tub of ice cream/bottle of wine, stat. It’s gunning for that high note with no guarantee it will be reached, committing to a new audition monologue that might fall flat, or “looking stupid” in front of one’s classmates, peers, or an entire audience.  Ashley and I (and every other teacher on the planet, no doubt) toss around questions like: How do we encourage our students to try new things? To take risks with their work? To embrace the idea of productive failure? To willingly make themselves vulnerable in the face of criticism, rejection, or the threat of anything less than an A+?  How can we best teach this concept when we’re still learning it ourselves—and probably always will be?

In looking for a way to talk to my students about how vulnerability can actually be useful, I came across Brene Brown’s work.  Maybe you’re familiar with Brene Brown, a social worker and author who researches and writes about vulnerability.  If you have a spare twenty minutes, check out her engaging TED talk, “The Power of Vulnerability.”  For now, here’s the highlight reel: Brown says that vulnerability—in addition to being necessary for the human connection we all need to live purposeful lives—is “the birthplace of joy, of creativity, of belonging, of love.”  I don’t know about you, but I think that’s such an empowering message: something we’re taught to see as weakness actually gives us strength and the ability to more fully connect with ourselves and others.  According to Brown, vulnerability comes with allowing ourselves to be seen, deeply seen, for who we are and is possible only when we have the courage to embrace imperfection, express gratitude, and believe that what makes us vulnerable is what makes us beautiful.  Sound familiar?

Hint:

Oh, and in case that last question had you stumped, Brown defines courage as the willingness “to tell the story of who you are with your whole heart.”  Sound like anyone we know? 

Bonus hint:

Ashley and I shared so much growing up together, but despite our sisterly status, we rarely shared in the ups and downs of CF. I knew the basics of what it was and that she had it, but that was about it.  Ashley did an excellent job of hiding anything that might make people think she was imperfect, and even as her best friend, I would have had to adopt detective-level observation skills to see any evidence of CF’s presence. The deftly hidden PICC line on a band trip and concealed pill bottles during sleepovers were overshadowed by all of the awesome times we had together, and I was very familiar with the way Ashley would gracefully sidestep any mention of CF with practiced ease.  I understand her reasons, but it kills me now to think of how hard it must have been for CF to be a secret in Ashley’s life.  What if I had stepped outside of my comfort zone to ask questions or offer support back then? Or even a year ago? What was I afraid of?

Ashley’s blog profoundly changed our entire friendship, so much so that, in my mind, I’ve started to divide our time as friends into “Before Breathe Bravely” and “After Breathe Bravely.”  Though it’s been a shorter time, our friendship “ABB” has been so rich, it feels like years.  Ashley’s willingness to be vulnerable to her entire audience of readers unlocked an entirely new understanding of my dearest friend and brought a new depth of connection to our relationship.  It gave me a vocabulary to ask questions.  It gave me permission to get involved.  It was a key under a welcome mat.  Maybe you feel that way, too.

Two weeks ago, Ashley and I took a break from talking about teaching and raised our whiskey drinks in a toast to her 55% lung function.  A year ago, I might not have even known about that success, and now, because of Ashley’s courage, I get to celebrate it!  Thank you, Ashley!  You show us that opening up to be fully seen by others makes for a purposeful life—and you are living it.  Through every challenge and victory, what a gift it is to truly see my best friend!

What rewards could you reap by stepping outside of your comfort zone?  Try something new today.  Thank someone who has changed your life.  And, this one’s really important: call your best friend.