Meet Elaina Pyke. Elaina is one of our special mothers who has attended our “We Walk Together” Mother’s Retreat. It is always so inspiring to read the stories of our mothers as time passes. This is not only Mothers Day month but also CF Awareness Month. Happy Mothers Day to all of our moms of CF children.
My name is Elaina, I’m a single parent of 3 incredible children Lillyan 15, Olivia 8 and Mario (aka Baby Mario) 4 years old. Mario has Cystic Fibrosis (CF).
Mario’s father and I found out we are CF carriers after prenatal screening during my pregnancy with Olivia. She does not have CF, but inherited a CF trait. Baby Mario was diagnosed prenatally at 26 weeks via amniocentesis results came back positive down to his genetic mutation Homozygous Delta F508 which affects the digestive and respiratory system. The diagnosis was later confirmed with both new born screens and sweat test.
Life with CF for us isn’t black and white, we have 2 crazy households that seem to function at their best. We’re living and learning our way of life with CF along the way. Hell yes our routines can be hectic, treatments don’t always occur at the same time of day, but hey, they get done.
Reminding ourselves to have grace is often forgotten but so important for us to move forward. I learned the importance of giving myself grace during the 2017 Montana We Walk Together Mothers retreat. I’ve also sparked a passion to become more involved with the CF community, but I wasn’t sure how and when…
Once 2019 came around, multiple opportunities arose and I decided to take advantage of them. I’m extremely excited to be a member of the Mary Bridge CF Parent Advisory Board and looking to joining the Mary Bridge Hospital Parent Advisory Council as well. I find fulfillment in advocacy and I’m looking forward to undertake these positions as a CF mother and representing our community the best way I can.
With all these opportunities evolving in my life I’m proud to say I’m still connected to the best group of women I ever met on our Montana Mothers Retreat FB group. It’s reassuring to know I’m not alone and we’re all traveling one hell of a journey with CF together.
My name is Martha I have 2 daughters with Cystic Fibrosis(CF) and a son who is a carrier. I have been married for 14 years to my hubby Colt who is a Nurse.
About me….wow a lot I can say, let’s start with my journey of the CF world.
I had my oldest very young and then my second soon after, they where Not diagnosed at birth, they where diagnosed after years of questions. Sierra was almost three years old and Maddie was 18 months. They where so small and looked okayish… When they were diagnosed Colt and I just felt like our world was crumbling at our feet. I became a addict, Colt withdrawn.
Finally we got it together and now we stand firm together but it took us coming together. I have since become a Yoga teacher, & yoga therapist. I bring the healing of Yoga to my family and then to the CF community.
I LOVE sharing my love of healing through Yoga at the Mother retreats, one in California and one in Montana.
I have been blessed with two daughters to teach me the importance of being present and knowing how love truly is the most healing power for the heart and soul.
I now teach yoga for CF mothers retreats, online for the CF community, & I do a Podcast for CF moms with Paige Dunn from Utah. I travel to CFRI conference in California to teach yoga to those attending. I love this CF community. We are tiny but so mighty, and to be part of it….it’s Magical! You truly see the darkest of times and because of it, we see the Brightest of light and love.
The Cody Dieruf Benefit Foundation receives $2,000.00 to help mothers of Cystic Fibrosis children attend We Walk Together Mothers Retreat. It takes a village to make a retreat happen and we were lucky enough to have Genentech join our team for our 2nd Annual Mothers Retreat. Cystic Fibrosis affects many families and CDBF likes to reach out to mothers to join in solace and do some soul searching as we walk with cystic fibrosis together. We are grateful for this grant. With the help of Genentech, we had a successful and memorable weekend.
A $10,000 grant was awarded to The Cody Dieruf Benefit Foundation for its program We Walk Together Mothers Retreat. A retreat for mothers of Cystic Fibrosis children. We are touched and honored by this CFF Impact grant award. CDBF feels it is an important aspect of their foundation. A way that we can continue to honor Cody Dieruf and all the mothers of cystic fibrosis children. Our 2nd annual event was truly inspiring, emotional and brought a sense of freedom as the mothers poured out their hearts regarding life with this disease of cystic fibrosis. CFF Impact Award was our title sponsor for this event. We are grateful to know that CFF believes in our cause, and we will continue to strive to make this event an available each year to mothers.
The Cody Dieruf Benefit Foundation offers a three-day We Walk Together Mother’s Retreat for the mothers of children with CF, providing them with valuable education, self-care, and mutual support. The retreat aims to improve the wellbeing of mothers and in turn, improve the health and happiness of their entire families.
Martha Modawell RYT 200
Martha is the mother of two daughters with Cystic Fibrosis. She studied Yoga and Reiki at Yoga For Healthy Living LLC in Brighton MI, where she received her RYT 200 Sivananda Style Yoga. Martha brings her authenticity and love for Yoga to each class. Her classes are humorous and yet grounding; she helps her students to feel empowered and to develop a true connection with themselves. Having found personal healing in yoga, Martha loves to teach from the heart and serve those around her with passion and love. At her former studio in Troy, MI., called Yoga For Healing, Martha worked with those overcoming addictions, PTSD, anxiety, depression, and trauma. Martha now lives with her family in Boise ID. She uses her innate ability to connect with people to create a comfortable relaxing and fun Yoga practice that empowers and enriches her students.
The Cody Dieruf Benefit Foundation welcomes Martha to our 2018 annual Mothers Retreat.
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.
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.
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.