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Adventures in camping.

I have always been very adventurous. One of the things I missed the most after having a child with special needs was the pleasure of camping. Michelle seemed healthy when she was born. But at two months of age she had acute encephalitis, and at five months old she quit breathing on her own. She ended up having a mass at the first vertebra in her spine.

After several major surgeries and much therapy, Michelle still depends on a ventilator to breathe and is considered an incomplete quadriplegic. She has had fairly good return of function to her hands, but they remain weak. She has had no brain damage, so she is intelligent and able to learn.

After many months of hospitalization, my first goal was to get Michelle home. As a single parent, this required getting her nursing care at home so I could work. Following a short period of adjustment, I knew I wanted to make our lives as normal as possible within our limitations.

First Outings

Our first outings were to church. This became, and still is, a weekly routine. Soon we also began going out to the mall for short strolls. Michelle is a very happy, outgoing child and she thrived on the additional stimuli. All my friends commented on how much we were able to do.

I enjoyed being able to get out, but I was not satisfied. All this time I was struggling with lifting a safety travel wheelchair into and out of the car, while having to move the ventilator and battery as well. I realized that I needed something easier before I could enjoy frequent trips. I traded my car in for a slightly used minivan but couldn't afford a lift. The next best thing was a collapsible ramp I had to put out and take in at every stop. I took out the middle and front passenger seats and had tie-downs installed so I could reach Michelle while driving if I needed to.

The change was dramatic. I no longer had to plan ahead of time before I went out. I put together a bag with anything we might need to go out. Also, the respiratory company made a power cord that plugged into the cigarette lighter in the car so we could run off the car battery. It gave me some peace of mind to know we wouldn't run out of power.

Camping Trips

We made a couple of overnight trips to my grandmother's house about 50 miles away. The trips went well and I enjoyed the freedom immensely. But my urge to go camping became stronger.

In May 1991, I made plans with my parents to go to northern Wyoming in their motor home. With the help of one of the nurses, I made a detailed list of what would be needed, what might be needed and what could possibly happen. Then with my van fully loaded, we headed to Casper where my parents live. After spending the night in Casper, we loaded the motor home with all the supplies and drove to the campground. With the generator in the motor home and the batteries, we had no problems running the ventilator.

The weekened was a big success. Michelle enjoyed the walks we took and sitting outside. She was able to see a horse for the first time. I was delighted but wanted more. So I began planning a trip for just the two of us and a tent. With the help of family assistance funds, I was able to buy a spare battery so we could spend more time out camping. But I still had to make plans with the ventilator's power needs in mind. The answer came in a special camp called Wilderness on Wheels, designed for people in wheelchairs. A call ahead took care of the power needs. It was a very enjoyable experience. We made a couple of other trips with my parents that summer.

This summer we are already planning several weekend camping trips. As Michelle gets older, she enjoys the experience more and is able to learn more about nature. I hope that Michelle will be able to get off the ventilator in the future, but in the meantime, I am trying to make our life as "normal" as possible.
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Author:Coe, Ellen
Publication:The Exceptional Parent
Date:Apr 1, 1993
Words:717
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