We Walk Together
A Retreat for Mothers of Children with Cystic Fibrosis
The Cody Dieruf Benefit Foundation for Cystic Fibrosis
September 28-30, 2018
320 Ranch, Big Sky Montana
At We Walk Together you will find companionship, support, understanding,
resources, wonderful lodging, food, scenery, community, and time for yourself.
There is no cost for your participation in the Mothers’ Retreat
thanks to the generosity of our sponsors.
You will be responsible for your travel.
Reserve your space at the retreat with a $100 deposit.
Your deposit will be returned to you at the retreat unless you choose to donate your deposit to CDBF
Please Join Us!
The retreat is limited to 20 mothers – register by August 15th. If registration is full we will notify you and place you on a waitlist.
For more information contact: Laura Mentch – email@example.com – (406) 600-9867
- Horseback Trail Ride (optional)
- Opening and introductions
- The Journey of a CF Mom
- Staring into the Sun: Looking at Loss
- Walking the Labyrinth
- Soul Collage®
- Meditation and Yoga for Everyday Life
- Mother’s Heartbeat Drum Circle
- Yoga practice
- The Road to Resilience
- Closing Ceremony
New this year- Online Registration!
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.
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.