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October 29, 2013

“Once you can accept the universe as matter expanding into nothing that is something, wearing stripes with plaid comes easy.” ― Albert Einstein

This should be a small thing. In the scheme of things, it is a small thing. After everything we’ve been through, this should be easy. And truthfully, I am enormously grateful for the team we are working with who are doing their best to not only make it easy, but to make it a little bit fun.

We ordered a wheelchair for Mary yesterday. A wheelchair. That thing I had been afraid of getting for her since she was nine months old, and it looked very uncertain that she would ever walk independently. She has come so far. So very far, and I couldn’t be more proud. In fact, just last week, I was boasting with no shortage of maternal pride on how strong she has become. But it takes all she has, and while that is great during a 45 minute PT session, it’s not very useful for daily outings when she should be able to put some of that precious energy towards actually experiencing the places we are visiting – the zoo, the mall, the park…

She has a stroller. But she is four and rapidly growing out of it. She has never had good positioning in the stroller either – an issue since not only does she spend a fair amount of time there, but she snacks on the go, and given her current feeding concerns, proper positioning is important. Her doctors and therapists have been talking to me about pediatric strollers for a while now. It’s a familiar conversation, but I kept putting it off – she still fits in the newest stroller I purchased. Well, I think she fits…. Her new team of physical therapists would beg to differ. 😉 So, at their urging, I quit procrastinating. I scheduled an assistive technology evaluation.

I can’t tell you how grateful I am for this community during times like these. Before our evaluation I was able to talk to many other special needs parents about what kind of stroller would be best. I got a lot of suggestions. But mixed in with the stroller suggestions were more than a few brave mothers urging me to consider the wheelchair. They pointed out that it would give her a bit of independence and that it would be more age appropriate. I flinched at the idea at first. But these women made good points, and I was forced to listen. And I am grateful. Grateful that they would take the initiative to offer a bit of advice that in any other circle might have been taken as insult. But, here in this safe space it could be quietly considered. And the more I rolled the idea around in my head, the more I thought about how the children in Joyce’s Daisy Girl Scout troop respond to Mary when she shows up in her stroller. She is less than a year younger than some of them, but they refer to her as a baby. The children at the mall look at her as a baby. Even today, one little girl who looked to be about two and was walking with her grandmother asked Mary why she was sitting in a stroller. It’s just not age appropriate for her anymore. I’m not sure why I had thought that a larger stroller would change that.

I mentioned the idea to my husband. He bristled at the idea of putting Mary in a wheelchair. In fact, I heard the same sentiment repeated by one of her physical therapists – “She can walk, I can’t put her in a chair…” And her pediatrician even echoed the idea of a “chair” being extreme. So I backpedaled and decided we would get the stroller. Something that she could sit in comfortably to pushed around in. Something simple and functional. So I went in thinking stroller.

The PT doing the eval cautiously looked at Mary and asked if I had given any consideration to a wheelchair instead of a stroller, especially given her unknown diagnosis. I could tell she was feeling us out, weighing her words carefully searching for a response, an opening…. I shared with her the ideas given to me by these other parents. I told her that no matter what we decided, my priority was independence as much as possible, and that as much as possible, this would be Mary’s decision.

Well, the PT immediately agreed with this suggestion. She hurried out of the room and came back with three sample chairs to try. She also got a few strollers for comparison. The representative from the medical supply company agreed with the PT. In fact he said insurance would be more likely to pick up the tab for a wheelchair even if it is more expensive because they often view a stroller as a stopgap purchase until the parents are ready for a chair. All this made sense. But I was still skeptical about putting her in “a chair.” I wrestled with the voices in my head, the faulty notion that putting her in a wheelchair would somehow make her more disabled… I mean, she can walk, right? I forced myself to take a step back and look at her objectively. In the stroller, she sits back and is largely sheltered from what is going on around her – “safe” I thought, “withdrawn” remarked the PT…..

Then they moved her into the first of the three itty bitty wheelchairs. She sat up so straight with the support of the chair. But it was the smile on her face did me in…

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She has never been in a wheelchair before, so of course teaching her to push one herself would be a big undertaking, right? Wrong. She put her tiny little hands on those wheels and smiled. And then she started moving herself back and forth around the room as I stood in awe.

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We tried her in couple of strollers. It wasn’t worth photographing. About halfway through the appointment, I stood her in front of a stroller and a wheelchair and asked her to choose. She studied them both thoughtfully for a moment. I sat silently next to her and waited. I asked the evaluators in the room to do the same. Quietly, a smile spread across her face as she zeroed in on the wheelchair and flapped her hands at it, asking, in her own way, to get back in.

Next we were on to picking out the details – the type of brakes, the type of foot rest, armrests, etc. And, of course, the color. Since the color had nothing to do with positioning, I was free to give this choice directly to Mary. The PT thought bubblegum pink would be perfect. I thought we would be between that and the lovely purple color they offered. I put the color samples in front of Mary. I told her we were picking the color for her new chair. After looking at them for a moment, she selected the green. Granny Smith green. I smiled and asked her if she was sure. Didn’t she want that purple? Or the pink? I would swear to you she scrunched her little nose at me as she defiantly grabbed the green and shook it at me. Purple hearing aids…..Purple glasses….Pink shoes… Butterfly braces…. I thought of all the accessories when I had chosen for her because I didn’t think she could understand to make a decision like that and then have to wait a month to see the results…. I chatted with the evaluators for a few more minutes and then asked her again, what color would you like? Again she chose green, and in hindsight, if I had been in her shoes I would not have been so gracious with me. And of course, just to be sure, before we left, I asked her on her iPad. Green. Yes, I asked her four times, and she must think that her mama doesn’t know her colors very well. I am still learning. Not just about colors but about learning to trust my little girl who’s not at all a baby anymore. Rather, she is growing into a self-assured young lady who knows what she wants and I need to learn to back up and just listen to her.

We ordered the wheelchair. She should have it just after Christmas. At the end of the day, the only reason to order anything else would have been the stigma attached to the wheelchair. A stigma that is held by us, by the grownups, but not by her. To Mary this chair is simply another way for her to engage and explore her world while preserving her precious energy reserves. To her, it is simple, as it should be.


This is the model we settled on. In green, of course. 😉

6 Comments leave one →
  1. Life&Ink permalink
    October 30, 2013 5:30 pm

    Ah, she is breaking down walls and that is good. When you get to begin watching that little busy brain thinking about what she wants to do and getting to do it for herself, by herself, you won’t ever think of a wheelchair as anything but a device that provides independence. Yay Mary (and of course, Mom)! 🙂 Such a thoughtful post, as always.

    • October 30, 2013 9:02 pm

      Thanks Charlotte. I am oddly excited about getting the chair the more I think about it. Right now, when we’re on an outing she walks about ten yards and then flops and I have trouble figuring out if she wants to go into different stores or exhibits, etc. I’m thinking this will not only be a mobility aid, but also a communication aid as well. 🙂

      • Life&Ink permalink
        October 30, 2013 9:17 pm

        I think it will. She will discover an independence through a mobility she might not have ever known. A family friend was in a car accident when she was 20 and is a paraplegic and well, maybe it’s because I got so used to seeing her in her chair, I just never thought of the chair as a negative, rather, I saw it as her lifeline. I admire greatly your honesty and your rawness and of course your strength. You my blogging friend are an inspiration.

      • October 30, 2013 9:53 pm

        Thank you Charlotte. xoxo

  2. November 20, 2013 4:44 pm

    I agree with Charlotte that the independence the chair will afford her is going to make a huge difference in all your lives. It’s all about making her more comfortable and happier and if that means enlisting the help of a wheel chair then so be it. Nothing negative there. 🙂

    • November 20, 2013 5:46 pm

      Thanks! The more I think about it, I am actually getting excited about finally receiving it (waiting on the whole insurance thing right now). I do think it will really help her engage more when we’re out without wearing her out so much. 🙂

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