We have made it through another amazingly short hospital visit. Sutton was released to come home for her protection from other illnesses lurking at the hospital. She still has some junk inside her, but we are able to manage the treatments at home for now. There is some good and bad to it all though. Sutton and Hiatt have to be separated for a few days and with a house built for a mouse, we had the challenge of sending Hiatt off to “Pop’s House” for a few days. Good news is that I will get to spend some great one on one time with Sutton as we prepare for her One Year Birthday Party this weekend. All in all she seems to be doing better every day and we will again stop at nothing to help her get to her best.
This year for our Cycle for Life fundraising, we are focusing on two people, as well as keeping up the pace for all of those with CF. As we fight each day to help cure CF for Sutton, we also fight to end the disease for all CFers. (Warning:Kleenex Alert)
Earlier this year, Brittany and I were led to know of a girl fighting CF to live… Here is her story:
“My name is Rosie, and I am 24-years-old. Raised in a very large and loving family, I was fortunate to always be surrounded by warmth and laughter. After four years of university, I graduated with an Undergraduate degree in Education. My dream was always to teach preschool. For the last three years, however, my career has been postponed. And perhaps it is gone forever. The reason being, I also face health challenges: I was born with a genetic lung disease, Cystic Fibrosis (CF). And after graduating, my lungs began to decline…
…I am now on the list for a double-lung transplant. And every day is beautiful.
I have known for over a year that this was my fate. And I have had many dark moments because of it. But through the darkness, one thing has always helped me to rise above.
And now, though my health is just as unstable and my fate more uncertain every day, my spirit and heart is stronger than ever. I feel love in the faces of my family, friends, and strangers. I feel love in the wind and the trees and the setting sun. I feel love in the grass beneath my feet and the sound of my nephews’ laughs and the touch of my loved one’s hand. I feel love in everything. Especially the brief moments that I share with new beautiful strangers. Every hello, every smile, could change the course of someone’s day. And I thrive on those everyday beauties.” -Rosie Alma
Brittany and I took a chance to connect with her and discussed meeting Rosie and visiting her through her recovery. We got busy, things got hectic and we just never had time. Time is an important lesson that Rosie taught us as well as love. We learned later that Rosie had her new lungs but they didn’t agree with her body. Rosie’s body was defeated by CF, but her heart and soul defeated the disease with compassion. Rosie passed on June 17, 2013, almost a week before her 26th birthday.
You are probably wondering why I am sharing such a sad story, but that’s not the case at all. Rosie, though we never met her, was a beautiful, positive, caring, loving and giving individual. For her 26th birthday, she asked for friends to give 26 Acts of Kindness. She wanted to spread love through the world. Rosie said “All I want for my birthday, and every day, is to spread love. Please help me in doing just that. I could not ask for anything more”. Rosie’s wish was held true and the random acts go above and beyond 700. She shared her gifts with everybody and while her reports of acts stopped at 718 on her blog, I see from the countless notes on facebook from friends and strangers alike, that her acts of kindness will go on forever.
This year we are riding in Honor of Sutton, but also in Memory of Rosie Alma. We are asking that each of you that give to our ride in Honor of Sutton, Ask one friend, family member, co-worker or even stranger to give another donation in memory of Rosie. We also ask that each of you give one random act of kindness in memory of Rosie. We can end this disease, we have to end it. We are reminded of its harshness every day, all day as we take care of Sutton. It is our wish for Sutton to tell her grandkids about the horrible disease that used to exist, but that we fought it down to nothing, and that if we put our minds and energy into something, we can do our best to make it happen.
“Something that I personally find helps to increase my feeling of love: rather than focusing on how much love I am receiving (whether from family, friends, a significant other, or the universe in general), I try to focus on the love I can give. To those I hold close, to strangers I meet, to the nature and existence and whole world around me. I try to treat all of existence with love and compassion. And I find, ultimately, that projecting love outwardly returns an unimaginable wealth of love to its original source: i.e. you or I.”- Rosie Alma
Help us show Rosie’s love for this years Cycle for Life. We are on the edge of something that can cure CF for everybody. Through all of the struggles of our country, we are afraid of the medical struggles that might lie ahead, but we can’t wait on others. We have to move ahead. We will fight to add every tomorrow we can for Sutton and continue to pass of Rosie’s love for all.
Will you help us?
You can read more about Rosie at the following links: