Wednesday, July 1, 2015

Things I have learned this week

My Facebook posts tell the story of a boy who had surgery a week ago last Monday and was out on the town yesterday, getting his hair cut, renting video games, and shopping with Mom and her friend, Andrea. It all seems like a victorious example of life continuing, unscathed, after a major surgery.

What my posts don't tell is the reality of Nathan having to adjust to life in a wheelchair. They don't tell about my struggles as the mother of a 14 year old boy who is basically a full-grown man, helping him adjust to life in a wheelchair, and feeling terribly inadequate to really help him. My posts don't tell of our triumphs - figuring out how to wash his hair, Nathan being able to get himself out of his chair and into his walker to use the bathroom, and this morning the realization that a whole night had passed without waking up in the middle of the night.

This week, I have learned that, although the Americans with Disabilities Ace (ADA) was passed 15 years ago, most of the places we visit do not have any way for a person in a wheelchair to open the door to enter. They also do not have doorbells to ring to request assistance. I have learned that when stores are being renovated, they don't consider their disabled customers when they scrunch all their inventory into rows so close that an adult would have to walk sideways to navigate and a person in a wheelchair will have to feel closed in, with clothing in his face and unable to see past the next pair of trousers on a rack.

Nathan and I have both learned to scan parking lots as we enter, looking for the handicap parking that has space next to the right side of the car. Some of them don't have spaces like that. We also look for the ramp that he needs to get into the store, since they all have curbs. Nathan, in his chair, is constantly scanning for those places where the concrete has broken and not been repaired, so I have learned that some stores that are "ADA compliant" haven't maintained their ramps so that a person in a wheelchair has to hope the bumps and gouges in the concrete aren't enough to topple the chair and a person who just had his hip sawed into pieces has to hope those bumps won't hurt as much as he rolls over them as he thinks they will.

I have learned that what used to be errands are now day-long, significant efforts, as Nathan and I still haven't quite come up with the easiest way to get him in and out of the car or for me to lift the heavy wheelchair into and out of our trunk or back seat. I now measure the amount of time errands will take by the amount of stops - each stop means a lengthy exit from the vehicle and equally long reentry. With each stop, Nathan's strength diminishes significantly. I am learning to find "one-stop-shops" where I can get everything we need, even if it means spending more money.

I have learned that people don't visit. When Nathan was battling cancer, nobody visited, but it didn't bother me all that much because it was me they were shunning. My infant son didn't have any idea that nobody was visiting us during the long days we spent in the hospital. He didn't realize that people could have been helping with the lawn, cooking, or just giving mom a break.

This time, when there was only one person who visited him during his five days in the hospital who wasn't either related or had to visit because of their job, he knew. Now that we are home and nobody is stopping by or calling to ask how he is doing, he knows.

I've always been fascinated by perspective. I am thankful for the opportunity to spend my days with the incredible young man that is my son. If I could choose any life I wanted, I would choose this one. I am thankful to be able to experience our world through this new lens and I am sure Nathan and I have a lot left to discover.

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