Challenging the Status Quo

PARENTS AS RARE - EPISODE 073

Challenging The Status Quo - Robin Powers

Robin Powers is a mother who has a rare disease and she's raising a son who has a rare disease. She's a single parent going to school, yet she still manages to knock out important advocacy-related work and projects, all while supporting others. We discuss navigating parenting as parents with rare diseases.

EPISODE HIGHLIGHTS

Can you share what your connection to Ehlers-Danlos syndromeIt is an inherited condition that affects the connective tissue of the body. Connective tissues are responsible for structuring and supporting the skin, blood vessels, bones and organs. Connective tis (EDS) is?

As a teen, I dislocated my knee in my sleep. I did my research and proposed to my physician that I had EDS. I saw a geneticist to get diagnosed and subsequently found support in the rare community.

What is the importance of having perseverance through the diagnostic odyssey?

I like to challenge the status quo because if you don't do it, no one else is going to do it after you. I've seen my son stand up for himself and advocate for himself many times and it wasn't because I taught him to do it-- he saw me doing it. I personally took the statistics and changed the odds by changing the factors and becoming more perseverant, not taking n for an answer, taking every opportunity I could find, and never being too afraid to ask. I knew that would turn my hope into action and would make things very possible.

What is your experience parenting while having a rare disease?

It's challenging to not have a caregiver and need a caregiver and then care for someone else and be their rare champion of hope. It's taxing and emotional because I always feel like I'm failing and I feel guilt when I need to rest or something that takes away from my son and our time together. I worry about him in the future and hope that what I'm adding to his life isn't going to be a deficit.

How do you manage being a parent with a rare disease and parenting a child with a rare disease?

I'm a single parent and I am the only raregiver. When managing our conditions, I always address any concerns for him first because he's depending on me. Even though I should put my oxygen mask on first, I know I can probably hold my breath for a little while. I remember suffering at his age and not having help and I won't have the same for my son. So I hold my breath, take care of my son and do the best I can to take care of myself.

What tips do you have for parents in a similar situation, having a rare disease and parenting a child with rare disease?

I came up with the terms rareabilty and rareativity. Rareativity is accepting what you can do for the day. If you have ten things to do, but you can only do three, postpone the remaining seven things for the next day. I accept that I can only do what I can do. Rareability is the idea of bracing the things that you're good at and fostering the skills you're good at. I use mindfulness to stay ahead in the game, to be mindful of the fact that I shouldn't be hard on myself for something and that I'm doing the best I can. Mindfulness of reality makes me feel lucky to have life, despite how hard it is.

LINKS & RESOURCES MENTIONED

The Disorder Channel

https://www.thedisordercollection.com/

Beyond Limits: Rare Men Talking Mental Health