Caregiver coaching is essential to my wellbeing. Having a child with Fanconi anemia can be isolating, even with a large and steadfast support system and a loving partner. As much as our family, friends, neighbors, and coworkers try to understand, they simply can’t comprehend what it’s truly like. That’s where Allison from The Negative Space comes in. She genuinely knows what it’s like to love and care for someone with a rare disease.
I reached out to FARF and Allison when my son’s counts were low. I felt overwhelmed with loneliness and the fear of what was to come. My 9-year- old-son was on the verge of his bone marrow transplant. We had spent the past 2+ years in isolation due to the pandemic, and the thought of enduring this monumental challenge and more isolation was daunting to say the least. I’m forever grateful that Allison was with me every step of the way – before, during, and after my son’s transplant – offering guidance and useful tools when needed, but also just being there to listen and make me feel seen, heard, and validated.
Allison and I connect virtually for the most part, but she was also there for me in person while I was in Minneapolis with my son. She braved the cold Minnesota winter to walk with me, help me process my feelings, and provide some respite from the long, demanding days in the hospital. Allison’s presence is calm and refreshing. She’s a bright ray of light who guides me through the maze of emotions that comes with navigating this disease. I look forward to our conversations and leave feeling lighter and ready to take on the next challenge that will inevitably come my way.
Caregiver coaching has changed my life (and my family’s lives) for the better. I’m thankful I have another person to lean on. I’m thankful my family doesn’t have to take on this disease alone. And I’m thankful that FARF recognizes the importance of supporting caregivers like me, so that we can fully and wholeheartedly support our loved ones in return.
Sarah (left) with Allison
How to apply for caregiver coaching
At FARF, we see and honor caregivers and all that they do each day for the person in their life living with FA. We recognize that this role is hard and can feel lonely and overwhelming. Our partner, Allison Breininger, offers one-on-one peer coaching to caregivers who are looking for someone who has been in their shoes, and who can provide a safe place to talk along with practical support. FARF is pleased to offer a limited number of scholarships for FA caregivers interested in receiving coaching but for whom cost is prohibitive. Contact Allison for more information.
