As I drive home after drop off and sit in the pick up line (anxiously waiting for my little Wiggles to come out in the "Zebra Express" wagon I look at some of the kids and wonder what is their special "thing" or what similar life experiences have we had with that mom? I'm trying to fit in. I'm trying to avoid those awkward moments when people don't know what to say or do when they find out about Will's diagnosis. I'm trying to see if we fit in. I keep trying to figure out what "box" he / we fit in.
It probably sounds weird or discouraging to say this but- It almost would be easier to find our box if Will was in a wheelchair... Almost.... I don't want him in one, nor does he need one, but it's an easier visual explanation of what's going on in his body.
Recently, two times in one grocery shopping trip I was asked about his leg braces. One person totally receives a "pass" on this one. He probably had never seen something like that before - though I would think working as a grocery store sacker you would see a lot of really weird stuff. The other person does not receive a pass.
Grocery shopping with Will involves putting him in the cart and piling all the food around him and him attempting to open, crush, or make a tower usually out of glass baby food jars - sounds really productive huh? My bribe for good behavior is that he's allowed to get out of the cart after check out and can push the cart with me to the car. This is a long, slow, hot process and I usually circle the lot A LOT to find a close spot for this purpose. I also do not return the cart if it's too far from the car because Will is sitting in it with the AC running trying to cool him down after his five minute walk. I suppose I could use the handicap parking sticker we have, but where's the fun in that?
Anyways, this woman literally followed me from check out to my car. Will and I stopped in the cart area in the front of the store to let some people pass us so we could go at our own pace. She stopped as well and started asking me questions about his braces.
Perhaps one would say that she too had some issues and I shouldn't be so judgmental. Okay, fine. But in the moment I really wanted to take one of Will's leg braces and shove it up her you know what. I still feel rage now weeks later about this.
It's one thing if you're our friend or we are in a normal social environment and we're meeting each other and you ask me a question say for example at a birthday party. I welcome that. We both need that. It helps us to share our lives with our friends and family and it helps you know what's going on. But strange woman in the grocery store? GO AWAY. Would she follow someone in a wheelchair out and ask them what's wrong with them too?
I can handle the stares and odd looks or the extra long glances at Will in public. I just assume they are so taken with how beautiful my child is or how sweet he is acting. I just can't handle it when someone asks me this in front of Will. It breaks my heart actually. Then I get mad because what they don't realize is that they have just made my sweet boy uncomfortable. You are the adult, act like one. This really doesn't fly with me.
Oh well. She was probably just trying to be nice. I tried being nice back because I wanted to set a good example for Will and I didn't want to further cement the idea that there's something wrong with leg braces. So we smile, we slowly walk. I cuss her out in my head. She offers to take my cart to the cart return. I remove the image in my head of me slowly rolling over her legs with my cart. I go home thinking about what box we fit in.
I guess the answer I've come to is that it's okay not to fit in a box. As long as we surround ourselves with people who are willing to help us build a new box around Will's needs we're good to go.
I offered to send out an email to Will's new class parents explaining what Leigh syndrome is and how it affects Will. After doing so, we have received nothing but kindness. This is a new corner of our box I'm thankful to be in right now.
Will in his new classroom updating the calendar. His amazing teachers just came up with the idea to have Will use a chair while on circle. This means he doesn't have to use as much energy and effort to get up and down and participate. I saw this and knew he was in good hands.
Using some of the outdoor creative play. Cooling is on!
The Zebra Express - this is Will's primary mode of transportation around campus. The campus is similar to a camp and very open. The classrooms are set apart like cabins, there is a lot of time spent outdoors.
He also has a special "driver" with the Zebra Express to class, I'll call him D to protect his privacy. D is one of the older, big kids who was asked to meet Will at carpool every morning and takes Will to class in the wagon. D and Will seem to like each other. That or D is just relieved to see Will so he can go inside
Little does D know, he's saving me and Will from a massive meltdown every morning. Will does not want to be late for D at all. He starts looking for him the minute we pull up into carpool. D is a very sweet boy and actually reminds me of an older version of my nephew.