On KJZZ's SOAPBOX, The Show turns over the the mic to listeners. For the fall 2022, writers tackled the theme SORRY.
My husband and I help our son get out of his wheelchair and into the specialized harness.
Soliz’s legs are long and lanky and he needs help scooting back into the contraption that will carry him up to the top of the 60-foot wall. This climbing wall looks just like any ordinary wall you would see at a gym except on one side the kids are scampering up like little mountain goats and on the other side, kids are being pulled up in a harness-type-chair.
Two guys strap him into the harness and Soliz tips his body back and smiles, his way of saying, “I am digging this!”
They begin to belay him up, pulling ropes and keeping a close eye on the chair — and my son, as both rise higher.
The crowd below cheers him on as if he were in a competition. Once Soliz makes it to the top a kid from below yells up, “Ring the bell!”
Soliz can’t ring the bell on his own so one of the climbing assistants helps him out. The crowd cheers. He’s up so high that I can’t even see the expression on his face, but I see his legs kicking and I know he’s loving it.
Our daughter, Camila, takes her turn next.
Both of our babies — now 15 and 13 — were born with the same rare genetic syndrome. Early on, the role of caregiver became intertwined with being a mom. Both of my kids use g-tubes to eat and eye gaze devices to communicate. Hearing and vision challenges make everyday learning hard.
Being a caregiver has been lonely and at times I have felt misunderstood. The level of expectation for parents of children with disabilities to “just handle things” weighs heavy. When we walk out into the world with our children who use wheelchairs, we often feel invisible. The burden is not about the caregiving itself, it’s about the isolation created by a society that has little value for people with disabilities.
But not this day. On this day, we proudly pushed our kids into a Phoenix venue designed specifically for people with disabilities. Instead of being ignored, our children received invitations to try a unique stroller that transforms into a bike trailer, and even to come to Flagstaff for an adaptive ski trip where the skis are controlled by sipping and puffing into a straw. For the first time ever, my husband and I envisioned taking a winter vacation up north as a family, or biking around the neighborhood with our kids.
When we saw that the climbing wall was labeled accessible we were skeptical; often when something is considered accessible our kids are still not able to participate successfully. We decided to try anyway. They did it — and the crowd went wild. The climbing assistants even asked to take a photo with our family!
The truth is, none of this has been easy. But the greatest peace comes in knowing there is a space where our children have the freedom to be themselves, just as they are, no apologies needed.
Heather Joy Magdelano is a full-time caregiver for her two biological children born with the same rare genetic syndrome — both of whom are currently teenagers! Joy is a yoga teacher and loves facilitating groups for parents who also have children with disabilities. When she’s not advocating for her kids, she loves exploring the local urban desert terrain near her home in Phoenix.