When pondering my life as the mother of a child with a rare disorder, I smugly think I’ll be able to share thoughtful insight with people who have not walked my path, or new parents who are starting out on a similar journey. Instead, I end up with many more questions than answers or wisdom.
During the holidays there was much discussion on social media about the egregious misuse of handicapped parking spaces. I have problems with these complaints. To begin with, if you don’t have the legal tags don’t park in the spots. Secondly, if you see someone get out of a car and walk into a store it doesn’t mean they don’t need the accommodation of a close parking space. You don’t know their circumstances. Not all needs are visible.
When my daughter was young, she used a wheelchair due to extremely low muscle tone caused by Prader-Willi syndrome. She had an adorable pink ethafoam chair that fit in an umbrella stroller frame by being held into place with PVC pipes. By disconnecting the PVC, I could collapse the stroller to easily toss it into my car trunk. It had a large tray covered in pink rosebuds and an apparatus which allowed us to hang toys and books in front of her face. The makers of her wheelchair were excited because it didn’t look like a typical wheelchair. But why shouldn’t it look like a wheelchair? If a wheelchair helps a person, why consider it a negative or shameful thing? Why try to make it look like what it is not?
Maybe their reasoning wasn’t because they thought using a wheelchair was a negative thing, but making it pretty might allay some of the stress, grief, and angst we were feeling about her cruel, confusing diagnosis. Did having a pretty pink wheelchair instead of a pretty pink tricycle make life seem more normal?
Some parents of children with challenging abilities don’t want the child to be labeled. As much as I didn’t want her to have the syndrome, I wanted others to know about it. Hers was not a condition that was recognizable. This was before medical awareness ribbons were common, and I always wished I had some sort of button I could wear that pointed out our differences. I think if others have a clue about what the needs of a person are, they might help to meet those needs. If we try to hide the needs how can we expect others to accommodate us in a helpful manner?
I remember taking her in her chair to see a dinosaur exhibit at a museum. We were told we could not use the elevator because it was only for wheelchairs and the museum staff didn’t believe that hers was a wheelchair instead of a stroller. Seriously? They thought we would pretend to have a child with a rare disorder? My heart broke anew that day, and I wished I could have handed them a card stating, "Hey, we’re not making this up! This is our life." We carried her in the chair up and down completely crowded staircases while other parents looked at us with exasperation wondering why we would attempt a stroller in the stairwell during such a crowded event.
Taking children to any crowded event, or some days taking them anywhere, can be tough. Let’s agree to champion each other. Let’s acknowledge that we don’t have a clue what is happening in the life of another person. Not all needs are visible. Let’s do what we can to make life easier for each other; share wipes, tissues, or an encouraging word, smile, hold a door open, judge less. Provide the bandage a broken heart might need at any particular moment.
Anne VandeMoortel is a Moline school nurse, blogger, grandmother of five, Prader-Willi mother, serial hobbyist, and collector of people and their stories.
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