A year ago, the will to bring Britt to the mainland for Tom's graduation started as a timid, almost hollow promise to ourselves that we would go. It slowly assumed likelihood when the time drew nearer.
A. PLANNING AHEAD. In February, I started imagining step by step how I would bring Britt from the house to the airport to the boarding area, etc., etc.... and everything that each step would require.
What to bring. Although I had a mental checklist of the steps to take in preparation, I actually made a physical checklist of the things to bring. And even then, I STILL managed to forget some – flashlight with batteries, my in-flight reading material, among them. Thank God, all the essentials for his care were in my 2 ½ boxes! Bringing the generator nibbled at my mind but, nah, I said, maybe overkill.
Where to ask for help. Linda Dullin, our HMSA case manager, was an indispensable source of sage advice. She was the sounding board for my doubts and second guesses, particularly those relating to equipment I thought I needed to bring. Remember, this trip is self-financed so she helped me rethink the stuff I wanted to have vs. the stuff I had to have. She hooked me up with Apria for the rentals that I would need: lift, hospital bed, overbed table.
Jennifer Li-Dotson, our MDA Health Care Services coordinator referred me to Andi Sass, MDA Health Care Services Coordinator (Los Angeles) for a commode. I emailed Andi a picture of what we had at home and she got that in our rental house even before we arrived from Oahu! Talk about speed, efficiency, know-how, concern! Now, I can never look at a commode without thinking of Andi (thanks to her sense of humor, she took this as a compliment, which was my intention.)
Fig.1. Britt’s commode. I padded the cover of the seat because of the ridges that form the edge of the cover, which pose a danger to his fragile skin. Manufacturers should rethink this design. Notice the different “legs” of this commode. The original legs were too short so I took off the legs from his older one and switched them. I took these precious legs to LA with me, in case Andi’s loaner was a Danny de Vito!
Check important websites especially those regarding travel for the disabled. Because we were traveling at mid- spring, I was concerned about the kind of clothing I needed to bring for Britt. He tends to get cold very easily not having much bodily insulation from the muscle and fat loss. Of course, no matter what, Britt would be wearing his signature aloha shirt and shorts but I would need to know which sweaters and lap blankets to take along. (I have always wanted to buy him ponchos to wear instead of sweaters as the latter are hard to put on and actually creep up his torso as the day wears on, but that could be the subject of another blogpost.) I started monitoring
for 15-day forecasts and historical data. (Talk about obsessive-compulsive! I was NOT going to give up my sweater if it turned out to be a cold trip, as I have thin blood to begin with.) Fortunately, it was a sunny 5-day trip with nippy mid-50’s at night but minus the humidity that our skins and lungs were familiar with in balmy Hawaii. Having (many) relatives in LA meant we could borrow warm blankets as needed.
As for travel websites, the one that gave me the most information was http://www.globalaccessnews.com/tipsandresources.htm
It gave specific as well as general info and led to links (although some didn’t work) that could be explored further. It confirmed some of the misgivings I had, for example, about checking in wheelchairs (It lost a lever sponge cover. Minor, but still…) This site was worth the quick read I gave it. I also took a quick look at
http://www.faa.gov/acr/dat.htm and searched for “air travel for people with disabilities”. Interesting read. If you have the time and interest, this is a great site to peruse regarding rights of traveling people with disabilities.
(To be continued : The sine qua non– wheels, airlines, housing.)
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