As parents, we all learn pretty quickly that there’s no instruction manual for raising kids. We figure it out as we go, pray we don’t screw it up too badly, and try our very best. But parents whose children have serious illnesses are in a category all their own. They live a life of pain and fear that those of us with healthy kids cannot imagine. Their kids cry, begging Mom and Dad to make it better. Sometimes they can’t, but they won’t stop trying.
And then, as if life isn’t hard enough, many of these parents have to face the occasional stares or silent judgments of strangers. Such is the reality for Amy, a mom from Kansas City whose daughter has a severe, yet often invisible illness.
Amy’s 6-year-old daughter Vivie suffers from Leg-Calve Perthes Disease. Some days, you’ll see Vivie bouncing around her yard, riding her scooter, and playing with her brothers. But make no mistake, this child has been through struggles most adults can’t even fathom. Amy, who wishes to withhold her last name, described Vivie’s struggles in a recent Facebook post that has since been made private to protect her daughter’s identity:
“In the last two-and-a-half years our Vivie has been through surgery, Petrie casting, was wheelchair bound for 11 months, has endured tons of physical therapy, A-frame bracing (which she still wears at night), and chronic pain. Lots … and lots of pain. Oh, and stomach issues from time to time because of all the medicine she takes for the pain … And even so, she still has days where the pain is so severe she is unable to stand let alone walk.”
So why did Amy choose to describe Vivie’s journey in such detail, and share it publicly? As a personal friend of Amy’s, I can tell you she doesn’t ever do this. She doesn’t complain, and she doesn’t get angry. She is, in fact, the most positive, uplifting person I know, in spite of all she and Vivie have endured. But recently, she was shocked by the treatment she and her daughter received from a complete stranger — all because Vivie’s illness is sometimes invisible to those who don’t know her.
“Vivie’s orthopedic surgeon issues us a handicap parking placard for her,” Amy continued in the post. “The more steps she takes on any given day, the more pain she has and the more damage she can cause to her hip. Therefore, the more we limit her walking, the better.
We were out to dinner as a family the other night and when we came out we found this (pictured below) on our windshield. Our handicap parking placard was hanging from our rear view mirror in plain sight. We did not do anything wrong. But still, it felt like a punch to the gut.”
The photo Amy shared was that of a simple napkin note, with a message scrawled across it that devastated her:
“Don’t park here,” it reads. “U [sic] are not handicapped. My mother is and you took our place. I watched you walk out!!!”
Amy tells Babble that she wishes the person who wrote this note had spoken with her, to learn the truth about Vivie’s disability before judging. She wishes she could say this to him:
“I would love for him to know that later that very night I was in my daughter’s room rubbing her hip as she was wincing and saying, ‘Mama it hurts. Make it stop hurting’ for what feels like the millionth night. And that she hasn’t been able to fall asleep without pain medication in almost 2 weeks straight. That every step she takes even though she looks ‘fine,’ could mean she’ll have more pain later. That she is often exhausted through the days due to the fact that it is difficult to sleep in an a-frame brace that is hot, itchy and keeps her legs in an abducted state. An a-frame brace that she’s had to sleep in for 2 years and in 2 years … has rarely slept through the night. That it is SO HARD to limit a 6-year-old who wants to run and play with her friends so if that means a shorter walk into the restaurant, then so be it. That although we’ve come a long way with this disease, we still have a long ways to go.”
Amy also stated in her Facebook post that she didn’t write this to gain sympathy for her daughter, but rather to raise awareness and promote understanding for those who battle invisible illnesses like Vivie’s every day.
“She is a strong girl with a lot of grit,” she explains. “She is making her way through this one day at a time with perseverance and determination. We typically don’t talk about all the ‘bad’ aspects of the disease that she experiences because we don’t want her to see herself as a victim. We want to focus on all the things she CAN do. (By the way, she is an incredible swimmer!!)”
Far too often, unkind notes like these are left on cars using handicapped spots, simply because the person inside didn’t “look disabled.” But what does “being disabled” even look like, anyway? Does a person have to be in a wheelchair to be deemed worthy of the spot? What about using a cane? Just like Vivie, a child may look healthy on the outside, but cry herself to sleep at night in her mother’s arms because she took a few too many steps that day. Maybe you saw her walk into the restaurant, but you don’t know she spent all of preschool in a wheelchair.
The bottom line? It’s not our job to decide whether or not a person deserves that handicapped placard or special license plate.
“I promise you,” Amy says, “they would likely give that placard back in a heartbeat if it meant a normal, pain-free life.”
After seeing firsthand what this loving, devoted mother has been through the past few years with her child, I believe she would. I believe she’d give anything up if it meant that her daughter could take a gymnastics class. Or play soccer. Or have a pain-free day and sleep without leg braces at night.There’s nothing she can do but mother her child and protect her from harsh, unfair judgments from strangers.
Amy’s hope in sharing her story with others? It’s pretty simple: The next time you see someone using a handicapped parking spot who doesn’t overtly appear to be sick or disabled, just remember that you don’t know the life he or she is truly living. And be especially grateful if you don’t have to hang one in your own rearview mirror.