Mother of the Month

Meet Lanor, our Mother of the Month of December.
 
What is in a name? Well be it told, Adaira is specially named with a story. In her moms words, “I never had a boy so I could use the middle name of Adair, after my dad and my grandfather. So I gave her the name Adaira. Needless to say, my dad was touched.”  Her name goes back to the 1800’s in family history.
 
We decided on the name after I talked to my grandfather before she was born. Shortly after we found out she had Cystic Fibrosis he told me that she was not the only baby it in the family born with CF. And he died before I had a chance to ask him any more about the family history of CF.
 
Adaira is the youngest of 5 in a blended family. Our pediatrician ran the test 7 times. In that same appointment we were introduced to our CF team and we were told that we will be going to the doctors office a lot.
 
Adaira’s Cystic Fibrosis Mutations has 2 rare mutations 621+1G>T and 2585delT.
 
Currently there is no miracle drug or therapy out there for Adaira. Adaira is now 8 years old and in 2nd grade.
 
Adaira loves being part of her Girl Scout Troop where she sold over 500 boxes of Girl Scout Cookies while sick. Adaira also loves to go camping with her family.
 
Adaira’s special friend Sydnee, encourages Adaira to to take all her medications and treatments. Adaira would much rather play than do all her treatments.

Saving Bridget

 

Sierra has Cystic Fibrosis. She is 12 years old and is on day 7 of her hospitalization due to a drop in lung functions. Sierra lives in Boise, Id. To make good use of her time, Sierra decided to make bracelets.  The hospital staff started to purchase them.   Sierra learned of our “Saving Bridget” campaign. 14 year old Bridget Mallo from Butte, MT is going to Houston Children’s Hospital for an initial evaluation for a lung transplant on January 6, 2019 and returning on January 12, 2019.  Sierra has decided to sell her bracelets to help Bridget.  All funds raised through the purchase of her bracelets will be used for Bridget.  They come in all shapes and sizes, adult/child, and you choose your color. They are $5.00 plus $1.00 for shipping.

Place your order and help Bridget.  Click the donate button on our web page and be sure to type in message, Sierra’s bracelets. Your size, and your color.

Sierra is an amazing young gal who wants to be a part of doing something good.  She says, ” We need to help each other, as a teen we don’t get the Normal Life”.

If you don’t want a necklace, you can still donate to our “Saving Bridget” campaign.

From Idaho to Montana, Sierra says, “you are not alone, Bridget.”

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Saving Bridget Campaign

 

George and I know to well what it was like when we had to have a lung transplant evaluation for our daughter, Cody.  The transplant wait list was to long and Cystic Fibrosis took her life.

14 year old Bridget has a chance.

The transplant decision is a complicated one and involves input from a lot of people. Not always after an initial evaluation,  are you put on the list, and if you are, you wait, wait for a donor.

The evaluation process is carefully coordinated to meet the specific needs of Bridget’s health history. Bridget will meet with a team of doctors and auxiliary staff.

Bridget leaves on January, 6, 2019 for her initial evaluation.  The Cody Dieruf Benefit Foundation asks that you gift a donation to help Bridget in her travels.    We have set up an emergency fund so that we are prepared as we never want to deny anyone a chance at life.

You may mail in a donation to P O Box 6044 Bozeman, MT  59771 or donate online at www.breathinisbelievin.org

CDBF welcomes Robin Modlin-Presenter for “We Walk Together”

Introducing beautiful Robin Modlin, MA

I am a mother of a Cystic Fibrosis child.  My daughter, Anna is 37 and had a double lung transplant 8 years ago. My life changed when she received this miracle. Having been actively involved with the Cystic Fibrosis Research Inc,(CFRI) community for so many years I wanted to give back by designing a CF mother’s retreat called Embrace. I am honored to also be included in The Cody Dieruf Benefit Foundation Mothers Retreat held in Montana, We Walk Together. It is my passion to see CF moms come together in community and learn to care for themselves.

I am also a mosaic artist and a SoulCollage® facilitator. I believe we can create beauty and art out of our most difficult times. With an inward eye and creative bent I enjoy sharing collage and other participatory projects with others for personal healing. 

Life has been very generous to me. I also have a beautiful daughter, Sara who is now a physician and a wonderful husband, Doug. I am so grateful and I know that CF has shaped me and my entire family by teaching us so many valuable lessons of love and compassion. 

Thank you, Robin for being a part of our We Walk Together Mothers Retreat.

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.

on

https://barefootbabysite.wordpress.com

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”.

Meet Mike and Kat Porco with Attain Health.

 

 

Attain Health was created in 2016 through the collaborative efforts of Mike and Kat Porco from Red Lodge, Montana.

Attain Health empowers patients with cystic fibrosis by partnering with them to develop the skills necessary

to optimize daily care and regain control over their health. Attain’s platform of Integrative  Health

and Physical Performance Coaching offers clients the opportunity to set personal health goals,

develop implementation plans, establish positive habits and overcome inevitable setbacks to

achieve their vision of health.

Attain Health has served over 125 members of the cystic fibrosis community.

Together, we can make a world a better place.

http://attainhealth.today

 

 

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.

A Mom Shares her Story! We Love You Jeremy.

 
Jeremy is the younger of my two children with Cystic Fibrosis. He was born two months after my daughter’s diagnosis. He was a loving little boy, making people laugh, incredibly sensitive to others with “ imperfections.” Teachers and professors adored him, peers flocked to be with him.
He was always the more ill of the kids, but he took everything in stride, entertaining nurses and doctors at the hospital- he quickly became the nursing staff favorite.
He began drawing at an early age, becoming an incredibly talented artist by his teens- he had one of his pieces chosen for a local museum when he was in high school. He graduated with a dance in his step, and a PICC line in his arm.
Jeremy went on to study art/ graphic design for three years. The summer of his third year he got an infection his body couldnt fight off. He held on and fought for three long weeks in the ICU until the end. He turned 21 on life support and earned his wings just 11 days after that birthday.
Now, my daughter fights for both of them, continuing to enroll in the clinical trials they did together…and we are left with rooms full of his art and pictures of him with his beautiful smile.. I often wonder what he would be doing now, had he beat that last infection, and I miss him with every beat of my heart💔💔

A Mom Tells her Story. We Love you Jeremy.

Lauri says: Jeremy is the younger of my two children with Cystic Fibrosis. He was born two months after my daughter’s diagnosis. He was a loving little boy, making people laugh, incredibly sensitive to others with “ imperfections.” Teachers and professors adored him, peers flocked to be with him.
He was always the more ill of the kids, but he took everything in stride, entertaining nurses and doctors at the hospital- he quickly became the nursing staff favorite.
He began drawing at an early age, becoming an incredibly talented artist by his teens- he had one of his pieces chosen for a local museum when he was in high school. He graduated with a dance in his step, and a PICC line in his arm.
Jeremy went on to study art/ graphic design for three years. The summer of his third year he got an infection his body couldnt fight off. He held on and fought for three long weeks in the ICU until the end. He turned 21 on life support and earned his wings just 11 days after that birthday.
Now, my daughter fights for both of them, continuing to enroll in the clinical trials they did together…and we are left with rooms full of his art and pictures of him with his beautiful smile.. I often wonder what he would be doing now, had he beat that last infection, and I miss him with every beat of my heart💔💔