By Effie Parks, Special to the Mercer Island Reporter
You know how it is on social media, right? It’s like you’ve got to pledge allegiance to a particular school of thought. Some are pretty narrow, negative and even toxic.
But here’s a radical idea: What about embracing non-toxic positivity? It’s a thing, I promise!
I’m talking about finding that sweet spot where we’re not just being blasted with sunshine rays all day. Because let’s face it, some days are more like a hurricane than a sunny picnic. We need a balance, a mix of “I get it, this is tough” and “Hey, we’ve got this, I’m here to help!”
As the mother of a disabled child with a rare genetic disorder called CTNNB1 Syndrome, this is a daily challenge for me, my husband and our whole family. Our son Ford is now nearly 8 years old. He cannot walk, speak, or feed himself. See effieparks.com for more details.
Our journey as caregivers to a medically complex kid is lifelong. And yes, a bazillion things about it absolutely, positively suck. It messes with your head, your heart, your sleep. But there’s more than one way to tackle this beast.
We don’t need a chorus of validation 24/7. Our load is heavy, that’s a fact. But let’s flip the script. Let’s talk about lifting each other out of that “special needs hole” instead of just nodding along at its edge.
It’s easy for people at the top of the hole to shout, “Yeah, Effie, it’s rough down there! Get a cozy blanket cause that’s your home now.” Nope, not helpful. We need to extend a hand, pull each other up, dust each other off, and take another step.
Speaking of steps, I recently started the “Once Upon a Gene Therapy Walking Club.” We get together regularly to walk and talk. It’s open to caregivers who want to share in a community that uplifts, not drains.
Our first three walks were in Bellevue’s downtown park, around Green Lake, and at Gene Coulon Park. If you’re a caregiver and want to join our next walk, email me at hello@onceuponagene.com.
I live on Mercer Island, but we can meet up anywhere. Walks in parks and forests, and around water, are especially healing.
As we walk, we remind ourselves that not everyone will understand our journey, and that’s okay. We don’t need to carry the weight of others’ misunderstandings. Our focus is to embrace the positive energy of those who truly get it.
We want to grow in an environment free from unnecessary negativity, toxic validation and all the other stuff that can contribute to you feeling stuck.
Our mantra: “Find Strength in Every Step.”
Caregivers, join us on a path where your struggles are recognized, your efforts are celebrated, and your well-being is paramount. Let’s share our stories and walk together towards a brighter, more supportive future.
This isn’t about ignoring the hard stuff. It’s about acknowledging it and then giving each other a boost to rise above it and learn from it. It’s about kindness, laughter, and a whole lot of love. And that, my friends, is the kind of positivity we need more of in 2024.
Let’s be the light for each other. Because together, we’re unstoppable. Walk with us.
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Effie Parks is the mother of two and lives on Mercer Island with her husband Casey. She hosts a podcast, Once Upon A Gene, and is on the board of a national nonprofit, CTNNB1 Connect & Cure.
