How I Finally Found the Community I Needed

An Impact Grant from the CF Foundation allowed my program, the Mothers' Retreat Program, to provide a space for moms of children with CF to get together and learn new approaches for addressing self-care, anxiety, and depression.

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Ginny Dieruf
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Every day, I am amazed at how many people have touched my life in so many ways.

Perhaps one of the most powerful examples is The Cody Dieruf Benefit Foundation's Mothers' Retreat, which began after my daughter, Cody, passed away from cystic fibrosis in 2005. Although the retreat is just one way in which The Cody Dieruf Benefit Foundation supports CF families, we wanted to create an opportunity that I did not have -- for mothers of children with CF to come together and form a community.

With the help of the Cystic Fibrosis Foundation's Impact Grants program, I was able to accomplish this in September 2017, during our most recent retreat in Montana. Over the course of three days, the women who participated created a community as we shared our journeys as mothers and learned how the stress of caregiving affects our children, our families, and ourselves.

But how, you might ask?

Nestled in the mountains on the Gallatin River, 20 women came together for a weekend away from the responsibilities of work, family, and caring for a child with CF. Upon arriving, mothers rode horses through the beautiful trails of Big Sky, Montana. Then, that evening, each mother brought something that represented a significant aspect of their child and introduced themselves. It was heartwarming and surreal.

We hung onto every word as each mother bonded with each story that was told. After introductions, we sat by the fire and laughed and cried and continued to get to know one another.

We expressed ourselves by designing our own jewelry, writing, dancing, singing, practicing yoga, and using a method of self-discovery that involves the creation and intuitive analysis of pictures. These different activities helped moms open up about their own walk with cystic fibrosis, whether it involved challenges related to siblings, teenagers, doctor visitsfinancial hardshipsdepression, or relationship issues.

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As we closed the retreat, mothers affirmed the value of the experience by sharing how the program had helped them as individual:

  • “I felt alone until this retreat. I now have what I believe to be lifelong friendships and bonds with these mothers.”
  • “I must have cried all weekend. Seriously ... all weekend. But, it started as sad/painful crying, then became healing crying and, finally, grateful crying once I finally realized I was not alone in this battle.”
  • “I was hoping to gain insight in coping with this disease. I was blown away by the emotional connection and community I have experienced.”
  • “The drum circle gave us a way to process the many intense emotions that were opened from the very beginning of the retreat. Finding rhythm together created a tremendous sense of community and, at the same time, a deep, personal release. The energy was bold, dynamic, and strong -- exactly what we mothers needed.”
  • “I was so nervous to come to the retreat, but I have learned so much more than I expected. I gained a new sense of strength.”
  • “For years, I felt like I was stuck alone on an island fighting this disease.”
  • “[Since the retreat,] I have tried to let go a little and not be so controlling, and to let people help me out more. It's okay to let others help me.”
  • “Because of the attention to more self-care, I am less depressed. I can see that has had a positive impact on the whole house and my ability to care for all three of our kids.”

The support and community we created has continued past our time together last September.

We share the highs and lows of our lives and support one another in our social media group. When a child is sick, we support each other; when a mother is feeling lost, we find her; when a mother does something for themselves, we show praise. Sometimes, it takes many years for a mom to realize that she is important in the caregiver world.

Although our journey with CF had been stressful and lonely, I would do it over again. Cody's life has touched mine beyond words, as she lived it with such joy and determination. By providing such an important outlet for hope and support, I know I was able to honor her legacy and make her proud.

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And as for me, I am finally connecting with the community of mothers I needed for so long.

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Ginny is the founder of The Cody Dieruf Benefit Foundation. Although she lost her daughter, Cody, to cystic fibrosis at the age of 23, she and her family have indeed found a new perspective on life and turned tragedy into a legacy of love. A longtime resident of Bozeman, Mont., Ginny continues, even after the death of her daughter, to offer hope, passion, and strength to those with CF and their families through her foundation. She hangs on to the belief that one day, a cure will be found.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.