Dear Friends of Feeding Matters,

At our recent board meeting, our Family Advisory Council (FAC) chair Amber described to board leadership how our council members were feeling. Our FAC is comprised of families of children with pediatric feeding disorder (PFD) who offer feedback, guidance, and support to ensure we are meeting the needs of our community. This council is integral to our work. But what Amber recounted was a feeling that I found to be highly relatable: One of treading water. One of a plateau. One of chronic fatigue.

Amber shared how so many of our families were doing everything they could to simply get through what life was throwing at them at the moment. And not all of it was feeding-related. As a group, the FAC decided what they needed was to be with each other. They scrapped the agenda and were able to support one another where they were and what they needed in that moment, letting go of the guilt that often shows up for us when we say no to what we are “supposed” to do.

Our families are faced with challenges in various forms: appealing for insurance, serving as the medical care coordinator, communicating with several specialists, tracking calories and medication, and implementing feeding strategies at every meal. Our healthcare professionals, advocates, leaders, and community members are doing what they can to show up too.

At times, all of that is too much – for parents, siblings, doctors, therapists, sometimes no one has the bandwidth.

A feeding journey is often long. It’s something we try share with parents the first time they reach out to us. We know it’s not what they want to hear. But if we can normalize that plateaus happen and accept the length of the journey, it may make the marathon a bit less stressful. I learned a big lesson in listening to Amber. I learned it’s important to simply recognize where you’re at, not beat yourself up, and give yourself permission to say no. Sometimes taking a breath is just what’s needed to be ok in the moment.

All the best,

Jaclyn Pederson, MHI
Feeding Matters CEO