When you have a child who can’t walk, has the odd seizure, eats through a g-tube, takes meds every couple of hours, has auditory defensiveness, and is susceptible to colds that could land them in the hospital, you tend to stay in a bit more than if you had a child that had none of that. At least that has been my response to it. Especially when she was really little and hooked up to the feeding pump and constantly vomiting. Not a good recipe for nice outings.
But before you know it life changes and I am behind in my adaptation to it. This warm season I am on a quest to go out. I want all of us to be out in life more. I want to think more broadly in pursuit of all life has to offer – like I used to before any of this happened. I will need to bring Ellie’s wheelchair/Kid Kart Express to do this. I have been slow to use it outside our home or school. There are a number of reasons for this. One, it’s damn heavy. Two, we only recently purchased a car that it would fit in. Three, in the winter it’s cold. There is no protective back like a stroller. Ellie is literally open to all the elements though Ellie’s lovely teacher, Kristen let us borrow a fleece poncho that goes over the child and wheelchair alike. One of the bus drivers for the other kids in her class made a few to keep the kids warm in their wheelchairs. Does that just make you tear up or what? Small kindnesses always make me leak tears as well as the fact that I envy anyone handy with the sewing machine.
The last reason I have not brought her out in her chair much is that there is nothing that will immediately denote disability like special seating/wheelchairs. Sometimes I feel like I fake it a bit. I pass Ellie off as a nondisabled child. Usually only people who work in the disability community really get that she has issues. And they are great. They ask thoughtful respectful questions, help us with doors, and offer resources as well as communicate with Ellie well. I have no problem with all of that. I think most people looking at her in passing may or may not intuitively sense she is different but her cuteness usually wins them over and they ask, “How old, two?” Ah no, four. “Oh” puzzled expression runs across their face and back to oooing and aaaing the pigtails. Jacqui you are sooo not alone there. ;-) I mean let’s face it; the child has an amazing head of hair inherited from both sides.
Trying to “pass” has not been such a conscious thing. I have only realized it recently when relatives ask me why we don’t bring her out in her chair. Not bringing her out in her chair saves on questions and stares though people wonder why we use the handicap spaces to park. When Ellie is in her stroller people come up and oooooh and ahhh at her beauty and I get treated like any other mom. I worried if she were in her wheelchair if it would change this. Would people still oooo and aaa and tell her she was adorable or would they hold back? Also, some of my anonymity, which I find comforting and safe, disappears when we appear different. And for the H.H.’s out there – do not mistake these sentiments for shame but more avoidance of people’s ignorance.
There is a practical reason as well to start using her chair. Access. I have been frowned at and almost denied access to certain places because they don’t accept strollers. The Isabella Stewart Gardner Museum in Boston did that. They admitted us and then as we were walking around with Ellie in her stroller a guard stopped us and said you can’t use that stroller. (Would have been good of them to tell us this before taking our money.) We said, ah she can’t walk, she has cerebral palsy and is too heavy to carry. The young security guy said back to us, well we still can’t allow the stroller. I don’t think it dawned on him what I was saying. I think people just think I am lazy bringing Ellie round everywhere always in her stroller. Dave was disgusted and said, let’s leave. I said, no way. Then I upped the ante really quickly and said, so you are denying access to this museum to the disabled? My daughter is handicapped and should be able to see this museum like everyone else. I want to see your manager now. The poor guy turned a bit pale and radioed his manager straight away. There were a bunch of innocent museumgoers witnessing this whole thing. Dave was like, ah honey, it’s ok, let’s go; translation: my attempts to fade into the woodwork and fall through the floor have failed. The boss man came and after I explained the situation he back peddled furiously and said, of course it was ok to bring that stroller, his guard mistook it for another kind of stroller that is too big to fit into many of the narrow rooms.
It was then I decided that to museums and places it is not bumpy or boggy, like most indoor spaces, I would bring Ellie out in her chair. It wasn’t entirely fair to put the museum guards in a position to look like idiots. Not that we intended that at all. But the frowning disapproval of Ellie’s stroller happens whenever I bring her to the library and the bookstore and other small spaces like restaurants. The truth is, unless we are going on a trail or beach or somewhere where the road is bumpy like our street and the surrounding streets of our neighborhood, Ellie is more comfortable in her chair. It gives her loads of support and is sized perfectly for her. This is the most important reason of all to use it. So far we have taken Ellie out in it to a restaurant once. Dave and I actually got to eat sans squirmy four-year old in arms. We actually tasted our food versus rushing to finish so we could trade off holding Ellie and the other could eat a lukewarm meal.
This weekend last we took Ellie and her chair to the New England Horticultural Show. We were there for at least 3 hours and we had forgotten Ellie’s toy phone that we usually attach to her harness so we were very happily surprised when instead of whining the whole time and being bored to tears, Ellie loved it. And I mean LOVE. We wheeled her around the entire place checking out amazing indoor fairy tale landscapes. She learned about grasses, smelled flowers, looked through glades and laughed and giggled, and charmed all around her.
I did notice that no one came up to admire her pigtails, but that’s ok. She had a great time with us and I don’t think she noticed. There was also an artisan component to the show and as we were wheeling through it Ellie started laughing and squealing in delight. I took her in the direction she was looking and discovered a bunch of these unique whimsical bird houses that as it turned out double as homes for house ghosts according to Norwegian tradition. And whom doesn’t need a good house ghost? Especially since they are reported to protect old houses from faulty wiring and other potential problems and danger, quite perfect for our beloved ramshackle abode. As I brought her closer to the source of hilarity I asked her which one she liked best. It turned out to be this one. We have taken to calling it, via our dear friend Linda’s lead, “Irish guy”. It had to be the Irish one. Ellie was so impressed with him we knew he must be ours. Of course we took him home. Every time she sees him she cracks up and launches on a long babble which I am sure he understands perfectly. All of this makes him worth every penny. It was the last day of the show, which is a good day for purchases as all the vendors dreading having to schlep all their wares home drop their prices by 30 or more percent.
We also checked out a booth of imported bronze garden sculptures when this beautiful woman who was running it came up to Ellie and squatted to get lower and began to have a chat. She asked if Ellie liked rabbits. Dave translated and said, “Ellie, do you like the bunny’s who go squeak, squeak?” (Because that is what they do in one of her beloved books.) Ellie laughed and the woman produced this bronze leaping rabbit sculpture just for Ellie. She insisted on it being a gift. She spent a little more time connecting with Ellie. It’s odd being the guardian of another soul in this life. I have to step back sometimes and let that beloved soul connect with old friends who outwardly are strangers even if it means accepting gifts from them that on the surface feel a little like pity. The woman was so intent on connecting with her I put my discomfort aside and thanked her for the gift. It was also one of those rare moments when you sense that something special has happened that you don’t understand. I still don’t understand it but mysterious strangers giving gifts like a bronze leaping rabbit sculpture is a cool experience to have. Ellie seemed totally down with it, so who am I to judge? Ellie has this amazing presence and people with open hearts always respond to it. Maybe this woman was repaying that gift?
Anyone know what leaping rabbit means? It was an Asian store. In Native American Indian Medicine Rabbit symbolizes fear. Does a leaping one mean overcoming that fear? Are you thinking poor Dave at this point? You see how my mind wanders? It’s the philosophy background, I can’t help but wonder at the symbols in life as they appear. Any thoughts on that would be appreciated. I asked Ellie but she just laughed at me.
We all had a great time. I couldn’t believe what a great show attendee she was and I can’t help but attribute it to proper support, the added height her chair gives her, and me conquering my fears of people’s reactions to our differences.