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Photo: personal photos provided by Amy

“Reserved parking @*#hole  Did your welfare check come today?”

“You should be ashamed!”

“That girl is too old for a stroller!”

Comments like these, whether spoken loudly, whispered behind parents’ backs, or even written and left on car windshields, are spoken out of ignorance and rash judgment. They are hurtful words said to parents who often have endured more heartache than the world realizes. These are the parents who, despite facing immeasurable challenges, smile through their days, get up, get dressed, and keep going. Because they have to—for themselves and for their children. It’s because of this sheer courage and determination to go out and experience life, that they attract attention—and cruel judgment from others.

These are the parents of children with invisible illnesses. These are the parents with handicapped tags hanging from their mirrors, yet their children unload from their mini-vans, fully able to walk on foot. These are the mothers and fathers pushing their six, seven, and eight year old children—children who look perfectly healthy— in strollers.

My very good friend Amy is one of these parents, an she has a vibrant five-year-old daughter named Vivie. I’d like to tell to their story.

Two years ago, Vivie was a healthy, energetic little sister trying to keep up with two active older brothers. Then one day, her world stopped. Vivie began experiencing severe pain and was soon unable to walk without pain medication. After an unfortunate misdiagnosis of juvenile arthritis, the true cause of Vivie’s pain was discovered. At four years old, she was showing signs of a rare condition called Perthes Disease, a childhood hip disorder caused by a disruption of blood flow to the ball (called femoral head) of the hip joint. The lack of blood flow causes the bone to deteriorate, which leads to severe pain and loss of mobility.

Over the past two years, this once active little girl has watched many of her favorite things slip away. Her brothers play soccer, while she sits on the sidelines. They attended the all-school roller skating party; Vivie stayed home. Gymnastics, running, jumping, dancing, and playing in a bounce house or on a trampoline are all off limits. Even recess can be too much for her some days.

Vivie and her mom Amy (a pillar of strength and patience) have not yet received a rude note on their windshield, or heard a judgmental comment from a stranger. But Amy has felt icy stares and disapproving looks in parking lots, as she and Vivie “look normal” yet park in the handicapped space. Amy says that it used to bothered her, but now that she’s been fighting Perthes with Vivie for two years, she doesn’t care anymore. She’s too tired and has too many thoughts in her mind of how to get Vivie better, what the next treatment will be, when she’ll see the doctor next, if he’ll have good or bad news after viewing the latest scans, and if Vivie will be able to go to school tomorrow. There’s no room left in her brain to worry about strangers judging her for where she parks her car.

I understand why Amy cannot possibly worry about such frivolity, but I care. I care because I see her. I see her carry her daughter piggy-back at our son’s soccer games to minimize her walking. I see the excitement in Vivie’s face when our daughters attend Girl Scouts meetings—as this is the one activity she can do, and on one or two evenings a month, she can leave her wheelchair at home and do crafts, sing songs, and make friends. She can feel normal again for a couple hours, until she gets home, takes her next dose of pain medication, slips into her leg brace, and falls asleep from the exhaustion of living with Perthes Disease.

Next time you see a child use the handicapped parking spot, please remember that there is so much you don’t know. You don’t know that Vivie has good days and bad. On a good day, Vivie may be able to ride her bike or walk for short distances. She can usually keep up with friends if they walk, and she may be able to skip a dose of pain medication. It is on these coveted good days that Vivie has no pain putting on her brace at night—the A-frame brace she wears every single night, keeping her feet 32 inches apart and her legs abducted in a “V.” You don’t know that even on “good days”, Vivie wears compression socks under her brace, causing her skin to become hot and itchy, leading to painful rashes and the need for prescription steroid cream.

The bad days, you cannot fathom. Amy describes them in her own words:

The bad days hit like a mac truck. Vivie might wake up screaming in pain during the night and require an immediate Epsom salt bath. On bad days, for the first hour or so of the day she does not even attempt to walk. If she does, her leg will buckle under her and she will fall to the ground. She either crawls or we carry her through that first hour or so. Eventually she might be able to walk. If not, she will ask for her wheelchair. She does not like using her wheelchair so if she asks for it, we know she is really hurting. Some days she will just use the wheelchair for a few hours, other times, the entire day. There is usually a noticeable limp on these days. We give her pain medication at morning and night which is not pleasant because it tastes awful. Another way we can tell how bad she is hurting is by how willingly she takes her medicine. If she is really hurting, she begs for the medicine and takes it willingly and quickly. On days that she is hurting she is rather grumpy and will lash out angrily off and on. By nighttime she is exhausted and we give her pain medication in hopes she will sleep through the night. When she is going through a string of bad days she will be up frequently through the night with hip pain. At first we try to rub her hip and keep her brace on. If the pain is too severe, we allow her to take the brace off. On her worst nights she will cry out over and over, “Mama, call the doctor! Make it stop! Why is this happening to me?” These are the hardest nights for her and for us. 

The future for Vivie is uncertain. The most recent challenge was that during a setback, Vivie’s stomach could no longer tolerate the high medication dosage that she needed to manage the pain. She began vomiting during the night, and Amy is now forced to consider other options that she isn’t ready for—such as narcotics and/or steroid injections. Just so her little girl can go to kindergarten and try to enjoy her childhood. This innocent child and her tough-as-nails mother have a long road ahead of them, but they are fighters. And they are determined to be stronger than this disease.

So if you see Vivie emerge from the handicapped parking spot, she might be walking and look perfectly healthy to you. But what you don’t realize when you see her sweet face smiling up at you is that this short walk is all she’s allowed for today. Because today was a bad day. But she hopes tomorrow will be better. You might even see her skip a step or two, as the simple act of walking, of exerting all the energy that five-year-old little girls have, is thrilling to a child who spends hours every day in pain, in a wheelchair, watching her friends and brothers do all the things she cannot. The best thing you can do for Vivie is to say hi and smile. She’ll smile back, I promise.

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