Caregiver

Life with CF is hard

Well at least I imagine it is. Managing the day to day aspects of this disease involves hours of respiratory treatments, mountains of medication, doctors visits, procedures, tests and time spent in the hospital. All of the effort necessary to live with cystic fibrosis can take a toll.

hanging @ the CF clinic getting vitals taken

Fortunately, most fighting CF have a fabulous and extensive network of caregivers to help them manage the challenges that come with this diagnosis. This network of caregivers starts with spouses, parents, siblings and other family members, but also includes friends, teammates and other members of the community. In this podcast, Gunnar Esiason highlights some of his caregivers, and talks about the role of his college roommies at BC and how they supported him during that crucial time in his life. Search blogs and YouTube channels and you turn up several accounts of  caregivers that help CFers manage life so they can thrive. These caregivers provide love and support and among other things, they listen, provide transportation to appointments, nag give gentle reminders about meds and offer companionship during long hours of treatments or time in the hospital.

For a child with CF, the most recognized of these caregivers are parents and often the most visible caregiver is Mom. Courtney Schmidt reminds us in a column she wrote a couple of years ago for Mother's Day to remember the mothers of sick children. Her words eloquently describe the reality of supporting a child who is fighting for their life. When reflecting on these moms we consider not just the challenges they are faced with but also their strength and endless love. We admire them and feel drawn to help.

Moms Moving Forward

Last fall, right around the time it clicked for us that we needed to get more involved with advocating and spreading awareness for cystic fibrosis, I met Denise, a mom on a mission very complimentary to ours.

Exercise, running specifically, became a lifeline for her to manage the routine, challenges and stress that come with supporting a child with type 1 diabetes who also happens to be on the autism spectrum. Her time hitting the pavement and exploring the trails brought balance and peace and she knew that she needed to share this feeling with moms experiencing similar situations.

From there, Heart Strides was born. The mission is simply to help moms at a time when they are least likely to take care of themselves. Moms are the first to put their needs aside when caring for their children - especially if their child has an acute medical challenge, chronic illness or special need. Heart Strides exists to support that mom - who gives so much of herself - so that she can continue to be a caregiver and a leader of their child's fight.

Proud to be a Heart Strides Advocate

One of the simplest forms of self care a mom can do is take time for a few minutes of exercise - that is where Heart Strides lends a hand. By providing the appropriate gear - proper running shoes, socks and technical attire, and a bit of encouragement, Heart Strides helps moms get moving. Having found the balance I need to support Colin's fight with CF through exercise, I am excited to be able to support the Heart Strides mission as an Advocate.

Exercise is one of the most powerful therapies a person with cystic fibrosis has at their disposal and I suspect it is vital for the well being of children battling other medical conditions as well. A parent is often the most influential role model in a child's life - they have the greatest opportunity to encourage a child to make exercise a habit. It is because of this, I feel especially drawn to advocate for these moms. She is the heart of the family, support Mom, everyone benefits.


Do you know a mom in need of support from Heart Strides? If so, you can pass along her name to me or you can nominate her to receive a care package by filling out the form here. You can also help by donating new or gently used active wear and running shoes to Heart Strides.


Connect with Denise at the Heart Strides Facebook Page.


To that mom with the sick child, let's go for a walk or run sometime. ~ Kim

From the bottom of my heart thank you to all of the caregivers who help support Colin: Brian, Taryn, Grandparents, Aunts, Uncles, Cousins, Friends, Teachers, School Administrators, School Nurses, Coaches and his Medical Team. We are so fortunate to have such a wonderful network.