Shoeless Joe

 "I felt bad because I had no shoes until I met a man with no feet.*"

This is one of my favorite sayings. It's sums up my attitude toward life pretty well.

 Let's face it, we are shoeless here.  We have a tough assignment in life keeping Maggie happy and healthy, but we have the ability, the support and the desire to pull it off. Others have it so much harder that we have to stop sometimes and be thankful for the soft sand under our bare feet.

It's all a question of perspective. If I can find a positive way you look at things, it becomes so much easier to handle.Take my career for example. For a couple of years I really mourned that loss. Then Maggie's needs required more advocacy.  Perhaps instead of losing my career as an attorney I was supposed to acquire the skills I need to help Maggie (and others) live the best life they can. Whether true or not, it is certainly more comforting to consider there was some method to the madness.

My greatest lesson in perspective has come from working at the hospital. Every day I see parents dealing with as much or more than I do with additional complicating factors. Some are far from home, some don't speak English, some are losing their children. Most are walking their paths with grace, thankful their situation isn't as bad as that of someone else. As I walk home after working, I find myself thankful that we live so close to a major medical center and thankful that I have the tools to navigate the complicated systems we find ourselves part of.

Our life is not a bed of roses, certainly, but it is not all thorns either. We have found a place in our shoeless life that works for all of us. Yesterday I was thinking about all of this as I put Maggie in her chair. She gave me a huge grin and all was right with the world.

My moment of philosophical stasis was quickly interrupted, though. As I pulled the shoulder harness over the top of the chair to secure Maggie, I knocked the pole off the back of her chair. The pole, which weighs at least ten pounds, is the one used to hold the dynavox in place on the front of her chair.
It fell straight down onto my big toe. I cannot tell you how much that hurt. I screeched and probably let out a string of expletives. Steve came running in from the front room to see what had happened.

Though I snapped at him choosing to lecture me at that moment,  the irony of his comment wasn't lost on me. He looked at the bruise forming on my toe and said,
 "Maybe you should wear shoes."

Maybe I should.  Life would be easier.



*author unknown but according to answers.com it is attributed to poetry from the Gulistan of Sa'di published in 1259

Supporting communication

Maggie communicates with her Dynavox Maestro, a communication device that she operates using a two switch system. The two switches work sort of like a computer mouse. She moves through the screen with one switch and when she gets where she wants she uses the other switch to select. It's quite amazing to watch her, she can fly through the pages when she really gets going.

Maggie's abilities on the Dynavox are the result of years of hard work by numerous therapists and teachers. Professionals recognized her intellect and abilities early and started the building blocks long before I understood where it was all heading. Maggie is smart and motivated to communicate, and she had excellent instruction and support. All of that is necessary.

In addition we need the practical pieces of the puzzle or she cannot use the device. In order for Maggie to work her magic, she needs the dynavox itself to be charged and in good working order, the tray with the two switches on it so she can navigate through the pages and the pole which attaches to the chair and mounts to the dynavox.  . With all the pieces she can take her dynavox anywhere and have her say. It should look like this:

When she arrived home from school on Friday she did not have the pole. Arrrgh. We were looking at an entire weekend of little or no communication which is very frustrating for her and by extension, for all of us. I will say, though, that of the three needed components, forgetting the pole is the easiest to work around. Without the device, forget it. Without the tray, she can't maneuver around the device, but we can and did MacGyver something for the pole.

We put Maggie at the dining room table and put the dynavox there. It's not perfect because the talker cannot come with her, but ti's better than nothing. We have to prop up the dynavox so she can see it. The design of the dynavox is frustratingly flawed, though, as it does not stand up by itself. (The "stand" is part of the case, but you can't use the case if there is a mount on the device for a wheelchair - it's like they forgot the users are sitting in wheelchairs). First I balanced the dynavox against a pillow. Not perfect. Not terribly steady, but serviceable. Of course the angle" wasn't right and she couldn't really see what she was doing. Maggie depends mostly on sound because of her vision, but she does look at the screen and it was bugging her that she couldn't see it right..

Steve came home and messed with it and when I looked the dynavox was sitting perfectly upright and steady. Maggie's face looked like she wasn't buying it.

Thank GOD for Giant Wine bottles! I believe that is called a jeroboam and holds (or held) the equivalent of four bottles of wine. And one dynavox.

Better, but she was still stuck at the dining room table. She couldn't use her talker in the bedroom or in the front room or anywhere else.


Steve disappeared into the basement - his workshop, his sanctuary. He can build just about anything and is at work on Maggie's Halloween get up now. After a while I asked what he was doing and he said  I'm making a new pole for Maggie. I wondered what it would be. The possibilities were endless. Steve saves every thing in that shop - every scrap of wood, old toy wheels, even broomsticks, because they make good dowels. Forget the dowels, it turns out broomsticks also make excellent poles to hold a dynavox.  He made it the right size to slip into the mount on the side of the wheelchair and used a screw to hand the dynavox from the broomstick. Maggie could now communicate on the move - but we had to move very slowly because it was held up by only one screw and it is an expensive thing to drop. (We didn't drop it).

Steve (visible in the background wearing his Giants hat) feels justified in his broomstick hoarding now. However, one broomstick to the rescue every 26+ years does not justify the pile we have down there. I admire his ingenuity, but it is my duty to keep up the nagging.

Maggie might have something else to say about that, though.