All too often, we walk and roll into a store, event or any establishment for that matter and do whatever we need to. Without Maddie, it tends to be a simple process, in and out with little fuss. But with Maddie in tow, we have a lot more to worry about. I'm getting used to it, but it always makes me anxious as soon as we get out of the car and work on getting the wheelchair out. Will someone comment that we're parked in a handicap spot before we even get Maddie out? It has happened before. How many stares/awkward comments will we get this time? Will people just stare or will they be kind and compassionate and offer a smile or a hello? Will people overcompensate because they pity us? The wheelchair is like a special attraction that says, hey, look at me! Only we don't want any attention. We just want to do what every other person is there to do, go about our business without a constant reminder that our child is "different." As I walk through the store, I wonder what Maddie thinks about the people staring at her with abnormal looks on their face. I wonder how I should respond. Should I stop myself from saying the things I'm thinking (which usually aren't very nice) or should I be calm, and educate the other person? Maybe I should just let it go...again, because I don't have the energy for this. Or maybe, I should stand up for Maddie and be her voice since she can't do it herself. After all, we are her voice.
I was walking through Walmart one day with Maddie not too long ago and a couple of older kids totally stopped and turned around and stared. No, wait, they gawked at her. For more than a few seconds. Mouth open and everything. Let me enlighten you with Google's definition of gawking - "stare openly and stupidly". This is not uncommon for us to experience. So, in that moment, my way of being Maddie's "voice" was to choose to stare back at them and hopefully make them realize how uncomfortable it feels. I know a kid in a wheelchair is different. I know it's odd. But staring...I mean...gawking (because, yes you look stupid), is not kind, helpful, compassionate or even a way to better understand. Yes, they were kids and I can cut them some slack because of that, but unfortunately this doesn't just happen with kids and in this instance, their parents didn't take the opportunity in the moment to teach acceptance and/or educate on how others might have different ways of getting around. I believe kids are inherently compassionate and loving and learn to be mean, judgmental and unaccepting by watching those around them. This is very apparent when a curious kid sees Maddie in her wheelchair and makes a loud, unknowing comment. Parents often quiet their kid and keep on moving. Yet, there are the parents who will respond by teaching them about differences. Who will invite them to say hi and talk with Maddie and who model compassion and acceptance by acknowledging her and being friendly. It makes me sad that this will likely always be a struggle for Maddie in one way or another and that her behaviors will be surprising to many which will elicit unkind or uncomfortable responses. For the past couple months, I've been trying to think of a good Halloween costume for Maddie. Unfortunately, she can't choose what she wants to be and I want it to be fun for her. She has been a pumpkin, a little lamb, and a cabbage patch kid in the past. We're not super into Halloween, specifically, but I do love holidays and opportunities to make memories and have fun. This year, Halloween was about so much more than the costume. The costume was fun to select and make, but the costume meant so much more. There really isn't anything exciting about getting a child a wheelchair, except one thing. Google wheelchair Halloween costumes and you'll find the one positive I found from it. Tell me they aren't the best costumes you've ever seen. Last year, we got Maddie's wheelchair too late to incorporate into her costume, so we incorporated her stroller. But this is the first year we got to make a wheelchair costume! Since Maddie's diagnosis, holidays have been hard. Yet, we're slowly finding ways to make them work for us to show Maddie the joy of the holidays. So this year, Maddie was Dorothy from the Wizard of Oz with a yellow brick road attached to the wheelchair and the Emerald City behind her, also attached to her wheelchair. And it created a lot of positive attention. Maddie received a lot of compliments, smiles and warm, friendly greetings from others about her costume, a welcoming change from the gawking. There were stares, but they were because they were checking out the costume. The beauty of a wheelchair costume is that the costume distracts from the wheelchair. For a few hours, Maddie got to have a really cool costume which meant she got to be a part of what everyone else was doing and she got a lot of positive attention for something other than the way she gets around. For a few hours, kids got to see her for more than a kid in a wheelchair and saw her as a kid with a neat costume. She got to participate in an inclusive way rather than sitting on the sidelines, which is more often the case. And this year, we even were able to feed her a Reeses cup by mouth which she has never had the luxury of enjoying! I take pride in trying to give Maddie a meaningful life. We received many comments about her costume and how much time and effort we must have put into it. To the average person, it might seem extreme or that we love Halloween. But, to our family, making a costume was no big deal compared to what we do for her on a daily basis (it really didn't take that long). And to know that she can be involved like other peers her age, motivated me to create a cool costume, even if it took some effort. It's meaningful. It's something I can do in a world where I often have no control of the things she experiences. And for just a few hours, she gets to be acknowledged for something other than being the kid in the wheelchair. What a treat!
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AuthorHi, I'm Kristen! I'm a mother of a beautiful, but rare little girl and the wife of my best friend. I have decided to share my experiences on this journey in hopes to help others understand or help others in similar situations. :) Archives
October 2017
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