The Gift of Sight

Gifts come in many different forms and often by means we do not expect. But, in everything there is beauty – we just have to see it.

As I looked down at you, beneath my breath was an abundance of tears I dare note let overtake me.  Within every tiny breath I saw the most perfect grace. A grace I could only hope to share with you through my loving arms that held you. I love you already because you are a mere tiny reflection of the dearest people who fill my heart.

I take a long and slow breath as to keep the tears and torrent of emotion from overwhelming me. I think to myself, “I thought I might never get to see this day.” And I close my eyes and whisper the words, “thank you” – stitching them upon the breath of a silent prayer.

This scenario and these words have resonated within me many times in the past year, each time with even more gratitude to be present and alive.  Each time, wanting more desperately to hold that moment and its beauty in my hands forever. Each time realizing what a true gift I’ve been given.  There are few more cherished and treasured moments in my life than these occasions. I relish in these moments and my heart and mind wander down a path of remembrance. A place where the deepest appreciation lives for the beauty that fills my life and the grace that has brought me to this very moment. A place in which I know could be so very different or cease to even exist at all.  

A Priceless Gift

Cystic Fibrosis may remind me daily of the things it has stolen and dares to rip from my life, but CF has also given me something so very priceless. It’s given me the gift of sight – an awareness that grounds me to the beauty that lives within every breath and fills every moment. The gift of sight that opens me to a world many do not take the time to see and appreciate. It’s hidden beneath the fullness and chaos of our busy lives. It gets lost beneath what seems ordinary.

But I truly see so very much – and it is a gift. 

What I See

In this life I may not have been given the gift and title of being called, “mom” (at least by something that’s not covered in fur, barks, and walks on four legs), but I’ve been given a gift so very beautiful in its own right. I have watched my dearest of friends become mothers. I’ve watched my friends grow in the most beautiful and honest of ways. There were several times in the past couple of years that I feared I would not be here to witness such a thing – making each of these moments more special beyond words. 

As I look down at you, I see your tiny delicate fingers and hands – so full of unassuming possibility. I see the gift you are to all those who will love you. I think of your beautiful mom and the irreplaceable gift she is in my own life and what a gift it is to see her be your mom. The world is yours, little one - breathe bravely.

Love to all the beautiful and impactful women who have shaped each of us into the people we are today.

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.

Definition of Family

Kalvin & Cooper

Meet Cooper and Kalvin, my boys.  There is no greater joy I get than coming home to them.  Sure, they drive me crazy at times, but they also can be the sweetest part to my day. 

My "family" doesn't look like the usual definition, but it is the one I know and love.  Take a moment and think about your family.   What is your definition of family? A dog? 3 kids? 5 cats? Your spouse or life partner?

The Question

I am at the prime age when people ask: "Do you have children?" or "When are you and Mark having a baby?"  I honestly don't mind being asked these questions, but in my mind the answers are so much more complex than the simple response they are expecting.  The answers are deeply buried in guilt, remorse, and heartache. 

"Family" Photo

The thick mucus caused by Cystic Fibrosis also affects the reproductive system: making it difficult for women with CF to become pregnant, and nearly impossible for men with CF to father a child.  Even if a woman with CF does become pregnant, the pregnancy itself, and the high risks involved with CF for both mom and baby are always of great concern. Infection, lung function, and nutrition for mom and baby are serious matters.  The exhaustion that also comes along with having a baby and caring for its constant needs can put the health of the person with CF at great risk as well.  

Heartache

Have I thought about having a baby? Giving Mark a family? Leaving a part of me behind for when I am gone? Yes, lots.  Especially in the last year and half when the realities of CF have hit me so hard and made me face the future.  I am stubborn and driven as they come when I am challenged, but I know deep inside that I can't have a baby. I know physically these lungs will not let me and the extreme toll it would take on my body.  Also, I think about the future and the reality of leaving Mark as a single parent and a child without a mother.  My heart breaks when I am checking myself in at the hospital and I see a couple checking in to have their baby.  I often think, "they're going to leave the hospital as a new family; how excited they must be for the future" My heart also breaks when I am laying in a hospital bed having a PICC line inserted and the "lullaby" song plays over the PA system to announce a baby has been born. I lay there and think about how different life could be, I think of Mark, I think of never experiencing that joy with him, and how he would be a great dad.

I am surrounded by the most beautiful of friends and their growing families.  I am so lucky to be a part of their lives and to experience having a baby and raising children through them: from the excitement of being pregnant, to their first soccer game.  Being a part of their lives means more than they'll ever know.  Thank you for making Mark and I a part of each of your families.

My "family" may not look like the usual definition, but that's what makes it so beautiful: each of you.  I will live gratefully for the "family" I have been given.   Love to you all. 

What is your definition of "family?"