May You Never Take One Single Breath For Granted.

May you never take one single breath for granted.

To be grateful for each breath, is something we should practice every day. Not everyone has the ability to fill their lungs with ease. I’ve grown up knowing that. It is because of Cystic Fibrosis, that I feel so vastly that my lungs should never be taken for granted. Every breath, every inhale and every exhale. The way my respiratory system is so intricately and beautifully made. My body, for being healthy and carrying me throughout my journey of life. I refuse to not practice gratitude. To be grateful, every second, for another breath, every day for another day to experience life. I am grateful.

We should not take moments for granted. We should not take our time here, on this earth, for granted. We should not take our bodies for granted. We should embrace every second. We should inhale the goodness and the grace we have of another day of life.

Today, I will bask in the goodness of another day. I will be grateful. I will not take a single breath for granted. I will take my body as high and low as it can go. These moments, this life and my body- are not forever. I will make every second as beautiful as I possibly can- however I choose to.

Today, I am grateful for each breath.

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18 year old Madison Ivey never got to grow up with her cousin Cody, who passed away from Cystic Fibrosis, but she holds her close to her heart. From a very young age, Madison would see a butterfly or hear a song and would know that it was Cody making herself known.  She says that, “I feel that Cody is always giving me a sign, leading me to believe that I am on the right path”. ” Madison says that “Cody is her angel on this earth, always dancing to her own beat of the drum”.

Team Cody

It takes a team and The Office of Gallatin County in Bozeman, MT. formed a softball team and played with hearts full of love in hopes to draw awareness of Cystic Fibrosis.  Being strong supporters of The Cody Dieruf Benefit Foundation, Gallatin County Softball Team would like to stike out Cystic Fibrosis.

Whether you make a donation, spread awareness, become an organ donor, or just simply believe in hope for a cure, CDBF hopes that the kindness of others, will inspire you to always try and help people in need and to truly make a difference in the life of those with this disease called cystic fibrosis.

65 Wellness Wishes

A special Thank you to Meghan’s Light Inc.  Sometimes people are brought into our world for a reason.  Meghans Light was formed by Meghan’s family after cystic fibrosis took her life at the age of 39.  
The Cody Dieruf Benefit Foundation is in the planning stages for their 2nd annual Mothers Retreat and Meghan’s Light Inc. is sending a mother from the New York area to this retreat in beautiful Big Sky Montana.
We are forever touched by the goodness of others in this fight against cystic fibrosis.  From near and far we help each other.  Words can not describe how incredible and compasionate Meghan’s Light portrays.  From Boston to Montana, our journey begins to get to know each other better.
 
Meghan’s Light, whose mission is to support finding a cure for cystic fibrosis and to inspire hope and courage in patients, families and communities impacted by cystic fibrosis. Meghan’s Light remembers the light without and the light within that radiated from Meghan during her earthly journey and the continued presence of her light that shines brightly today.

Being a CF Mom

 

Robin Modlin, mother of Anna with CF and Sara without CF 

I always wanted to be a mom. My first child was my entry into a special type of  motherhood. At 18 months old and being kept alive with a ventilator in the ICU Anna was diagnosed with cystic fibrosis. I was devastated. My whole sense of self, my identity as a mother, as a woman wanting a family, changed. Anna survived that bout and came home. I became a mom of a CF child. There was so much to get used to. Our routines revolved around treatments and eating and avoiding illness. This is the way it is in a household with a CF child. I had to decide how I was going to do this job, this job of motherhood that was so very different then I imagined it to be. How would I mother a child whose life expectancy was so unsure? Right away I realized that if her life was to be short there would be many blessings for us and if she should break the odds and live a longer life there also would be blessings. Who was I to say or know what it was to be? This was Anna’s path and I was to be the best mother I could be to help her realize who she was in whatever length of time she had. I had to let go into the unknowable. 

It has been that letting go into the unknowable that has been such a significant part of my life as Anna’s mom. I have come to understand that even with all of the statistics of life expectancy and the real fear and reasonable expectation of death right around the corner we really don’t know what is to become of our children with this disease. Each CF child has his/her own story to be lived. There are trends and there are dear children who still die much to young in spite of the better care available today and there are those who do not get sick until long into adulthood. And there are miraculous treatments like lung transplants that totally change the experience of this disease. It is just that when we begin this journey we don’t know which it will be. As CF moms we all begin on that same ground and in order to survive we must befriend the unknown. 

We have to take each day as it comes. Good days bring relief and difficult days bring tears, tension, fear and pain. Taking care of our selves as mothers is crucial. We want to meet each day as the best mom we can be. We also need to know ourselves as people with other talents and wants. We need to carve out time for our healing and personal expression. This can be difficult at best when our children are struggling, but we must. I did this for myself as I raised Anna. First of all I had a strong CF community in CFRI and I made sure that I got away on my own, that I had quiet time and did things I loved to do. Sometimes I did not do it until I was almost ready to pull my hair out, but I did it. Self care, meditation, exercise, private retreat and art work saved me.

My daughter is about to turn 37 years old! How did that happen? She received new lungs 7 ½ years ago and our lives totally changed again. Her life is still uncertain, as is mine and yours but she has lived hers to the fullest. I still have the pain of being a CF mom. I don’t think that ever leaves. Because of that, 4 years ago I started CFRI’s original CF mom’s retreat called Embrace. Last year I also helped to design and implement the Cody Dieruf Benefit Foundation’s CF mom’s retreat, We Walk Together. We have welcomed CF moms from around the country to develop a community, learn about self care, and have a respite. The amount of healing that happens from the moment the moms enter and then must go home back to their lives is remarkable and such a gift. Magic happens when moms can be part of their tribe with others who “get” what their life is about. We have watched them to continue to support each other between retreats as well. This has been the missing piece for us moms. What has been missing in CF care is the recognition of the caregiver’s need for well being. Moms need to learn that it is OK to take care of themselves and be offered permission and ways to do so. I am so heartened by the tremendous success of Embrace and now We Walk Together. CF moms need each other, need to tell their stories, need to listen and need to be heard.

Register Now for 2018 Mothers Retreat in Montana

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We are excited in our planning stages of 2018 Mothers Retreat to be held in beautiful Big Sky Montana at the 320 Ranch.  Register online at http://www.breathinisbelievin.org.

Prepare for an enlightening weekend as all of us mothers Walk Together in our journey of Cystic Fibrosis.

The CDBF 2018 Mother’s Retreat will provide participants with a restful weekend, free from the daily

responsibilities of caring for a child with CF. Participating mothers will find support with one another, learn

new approaches to caring for themselves and return home renewed.