Sunday, April 13, 2014

This Is For You

It's Spring, my favorite time of the year.  Vibrant green shoots begin to emerge from the earth as the last of the snow melts away.  The snows of the Winter have given way for new life to spring forth.
Soon, Tulips and Daffodils will embellish the landscape with their beauty.

Many of you have asked what my sudden motivation was for starting the blog, and why now?  I started this blog not for me, but for all the amazing people in my life.

For 27 years I have pretended there's nothing wrong: never wanting to worry anyone or draw attention to myself.  Friends and family would always ask me how I was feeling or how my doctor's appointments went.  I would always reply with the words, "fine" and a big smile, in hopes that it would put them at ease and make them move on from the subject.  I thought it was easier for us both to pretend CF didn't exist.  I never wanted to be someone's pity party or again, draw focus to myself.  I thought I was protecting everyone from those difficult moments when words are lost.  There is no worse feeling than telling your friends and family negative news or information. You see their heart sink as well as yours with every percent of decline in lung function, infection, and IV treatment.   Most of all though, I thought I was protecting myself from the possibility of people seeing me as different, weak, or sick.  I have never wanted CF to define who I am.  I have wanted everyone to see me first and foremost for who I was, not what I had.

What has changed?
I still do not want to be someone's pity party, and I still have a very hard time dealing with the conversation being solely on me, especially when it comes to CF.  I know completely shutting people out of my life isn't the right thing anymore. I am not protecting anyone: I am just being selfish.  As I have had to face some harsh realities with CF in the last year and a half, the amount of love and genuine support is overwhelming.  People truly care: they want to be a part of my life, CF and all.  I have never been more humbled in my life.

The landscape of my life is filled with beautiful flowers: some just budding, some just sprouting from the earth, and others in full bloom.  I am so thankful for each beautiful one.

Immeasurable Gratitude.
What motivated me to do this blog? Some very dear people in my life during these past months came to me wanting to raise money and awareness for CF.  I was shocked and overcome with emotion. I thought I had hidden that part of my life so well, and to have people say through actions, "we know and it's ok, Ashley. We love ALL of you, and we want to fight for your tomorrow."

I wondered how I could ever repay them.  How could I ever show them how much their kindness and support means to me?

By putting that which I have hidden for so long out for the world to see.  To be me.  Love to you all.

What is blooming in the landscape of your life?

"Let us be grateful to the people who make us happy, they are the charming gardeners who make our souls blossom." - Marcel Proust


  1. This is a great post and blog. I recommended your blog to the readers of my blog today, I hope you don't mind. (If you do, let me know and I will take the post down.) Here's the link for you to check it out:


  2. Ahhh, Dear Ashley. Tears are rolling down my cheeks as I type this. You are so beautiful...inside and out. It was your friendliness, outgoingness, warm smile and an empty chair next to me at a baby shower that brought us together. I had no idea what it takes for you to stay healthy and remain healthy until I started reading your blog. I didn't know what CF really was and had never met anyone with CF. CF by no means defines who you are. I look forward to piano lesson days because I want to see what you and Mark have been up to, to learn how school is going, to see your warm smile and hear your encouraging words for my son and me, too. Your outlook on life is inspiring and being around you doesn't make me feel sorry for you it makes me want to be a better person, to not take things for granted like sleep, deep breaths, eating, friendships, spouses, etc. CF sucks, I'm pissed that you have it, but if you can keep smiling, encouraging, believing, helping, loving....then we all can. Thanks for being "real" and for all of your talents. Suzy