"Suffering the Slings and Arrows of Outrageous Fortune"

Decision Delayed

We had Em’s wheel chair eval on Thursday. We met with the PT and wheel chair rep and had a long discussion about what are the best options for Em. They started off from the assumption that a power chair is the only logical option (and, just between you and me, it really is. It just isn’t so easy to accept that when you are 13. Or at any age, for that matter.) So, when I saw Em shutting down a little, I made sure they understood that she wasn’t sold on the idea of a power chair. I was relieved that they took her feelings on board and encouraged her to share what she was thinking.

That led to a discussion about other options, chiefly ‘powered’ wheels – the rep was suitably impressed that we knew something about them and recommended e-motion as the best option. Unfortunately, even e-motion wheels probably will not be enough to make a manual chair feasible for Em. They are not a magic solution.

After a long discussion, Em agreed to give the power chair the rep had with her a whirl. The world actually didn’t end and Em was even almost enjoying the chance to ‘drive’. But, it still sucks and nothing will take that away. Bottom line, I think Em knows that a power chair is the best (only, really) option and hates that truth.

So, as a quite brilliant young lady, she made the decision to schedule another appointment with this rep, at which time Em will be able to try every option the rep has to offer: a manual chair, a manual chair with e-motion wheels, a power chair and a scooter. She will be able to try them outside on different surfaces to see how each does for her. It was a totally reasonable and wise request on her part. If she ends up with a power chair, she will have not have to wonder if it really was necessary because she will have actually tried out all of her options.

We will be meeting later in September – probably the 10th but will have to wait for the rep to confirm that date. Of course, Em is the one who set this all in motion and it is right that the terms are dictated by her – on one hand, we would like the perfect chair in her possession today, but on the other hand, taking our time and making the right decision is the best course of action.

So, no decision has been made and won’t be made for a while. It gives us all time to adjust to the idea of a power chair and get our minds around it.

Once that all happens, the battle with insurance will begin. Sigh. Something this difficult just couldn’t be made a tad bit easier, could it? I am assured that between the efforts of wheelchair rep, the PT, the pain doctor and the new geneticist we will be seeing, it will probably happen. But, I am not holding my breath that the path will be smooth!


Comments on: "Decision Delayed" (2)

  1. Wow. Go Em! I’m twenty and I’m still tearing up when I want to do stuff and can’t…I probably wouldn’t be nearly this adult about being in this sort of situation. Heck, I get grumbly when I have to use my cane, even. You are raising an amazing, incredibly mature young lady.

    • Thanks! 😀 She is pretty amazing, if I may say so. But, this stuff is not easy. This is a monumentally hard decision for her to make, but I think she is going about it exactly right. It still sucks though and I think she would be the first to say so. In fact, she has several times! But, I think having so many people reaching out to her and supporting her with kind, encouraging words makes it a little more bearable!

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