FARF continues to grow the support we provide caregivers, including in how to return to in-person events. During the recent Retreat for Adults with FA, one of the ways we sought to help caregivers feel seen and important was through partnering with the founder of the Negative Space – and spouse to an adult with FA – Allison Breininger. Allison held caregiver-specific support groups and provided tools especially for caregivers.

Kayla Letham, a partner of an adult with FA and a first-time attendee to the meeting, shared a little about her experience as a caregiver at this event.

My first experience at a Fanconi Anemia meeting as the partner of someone with FA

This was my first time going to the Adult Retreat and as you can probably imagine, I felt overwhelmed. I remember having this sort of ‘lost’ feeling. The struggles that I saw all these FA adults going through and the strength with which most of them were handling it was inspiring. It was so inspiring that it made my overwhelming anxieties look petty in comparison. Up until this conference, FA wasn’t something that had been in the forefront of my relationship with Will (my partner with FA). As a couple, we haven’t been through as many of the hardships that I saw others going through. 

Before this conference, I hadn’t even categorized myself as a caregiver. It was a title I felt I hadn’t truly earned. It felt silly to tell anyone I was drowning. At the start of the event, I isolated myself in a corner writing cards and coloring some random picture of a flower. How could I ask for help? I wasn’t even sure what I needed.

Perhaps in casual passing or maybe because he knew, Will asked how I was doing. I guess it was an expected question, but I wasn’t prepared to answer. Again, all I could think of was how much more difficult this must be for him and how my experience couldn’t possibly compare. I told him it was a lot of information and was a little overwhelming but stopped short of voicing my internal screams. Somewhere in the conversation he mentioned how I am the first person he has ever brought to one of these conferences – not even his parents. Without realizing it, his words put an enormous pressure on me to be perfect and not disappoint him. 

Just then, the caregiver group was starting. I walked in a bundle of nerves, shaking and already holding back tears. I forced myself to sit in the circle of chairs, watching the door, ready to bolt. This looming thought in my head told me I was about to embarrass myself and run out of here crying. 

We started with some breathing exercises which suppressed the pit in my throat. Maybe I wouldn’t cry immediately after all. We talked about the labels for our name badges (this was the first year a ‘caregiver’ ribbon was offered) and the different meanings of being a caregiver. In this group, I found a place I could be heard and understood without feeling like I was diminishing my partner’s struggles. There was so much I had been pushing down that I could’ve stayed in that meeting for hours. Breathing exercises again. Near the end, I got ready to put on a brave face to go back out into the hall.

I went up to thank Allison on the way out. I finally felt seen, and I was okay with that instead of feeling guilty about it. We talked a bit more and she asked some deep questions, maybe things I was trying to hide even from myself. I have a tendency to push things down and mask my feelings. I wrestled with the idea of how to go back out into the hallway. A hug from Allison and her encouraging words were priceless to me.

Will and I went upstairs to our room to rest before the next thing on our agenda. At this point I was physically, mentally, and emotionally drained. Allison’s words rattled around in my brain, and I found myself sharing these overwhelming feelings I had been battling with Will. He made it so easy to talk. Allison helped me break down those barriers with him and with myself.

It’s weird to think that before we even attended, I didn’t think the caregiver meeting would be something I needed yet. I couldn’t be happier that I went. I can’t thank FARF and Allison enough for this kind of support.