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.

Welcome Mothers

The mothers’ retreat for moms of cystic fibrosis children is one way in which The Cody Dieruf Benefit Foundation
supports CF families. Our foundation, created in memory of our daughter, Cody,
honors Cody’s final request which was for us to help other families with Cystic Fibrosis.

We are on the countdown to September 28th, 2018. Our retreat will be held at 320 Ranch in beautiful Big Sky, Montana.

 

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.

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💔💔

We Walk Together

Our Mothers of Cystic Fibrosis Children need you.

Become a fundraising Hero for The Cody Dieruf Benefit Foundation during Give Big 

https://www.givebiggv.org  
May 3-4, 6pm-6pm  The Biggest online giving day of the year

“We Walk Together” Mothers Retreat

Our top Fundraising Hero will receive a
$100.00 gift card to Rib & Chop House 

With your help we can send a mom of a cystic fibrosis child to our three day mothers retreat 

 Name: We Walk Together

https://www.givebiggv.org
Date:  May 3-4, 6pm-6pm

You can introduce a friend and let them know of our important work that we do.

You can let our famiilies with cystic fibrosis know that they are not alone.

Moms we are here for you!