We're having severe winter storms today. Again. Still.
Yesterday the power went out about 1 am & didn't return until 6:45 in the morning, just in time for my morning IPV treatment. Boy, was Mom ticked! Sam keeps forgetting to fix our generator & of course, we only remember that vital fact when we need it. The storm blew hard all day, sometimes dimming the lights (which is why I couldn't post my semi-daily/weekly journal) & yet amongst thebrownoutsthere was an hour of sunshine. When my respite worker Tessa came in at 8:30am, she said the car next to hers at her apartment had been hit by a large branch. Glad she never parks under the trees.
All in all, I enjoyed the day. I'm the only one I know who thrives on these kinds of storms. Mom says it's because I was born so close to the airport you could see the rivets on the jumbo jets. It could explain my affinity for loud, deep sounds like roaring lions & waterfalls.
Around 5:30pm the power began to flicker & finally went out by 6:30, so we brought Nana over to spend the night because our heater still worked. While the erstwhile Sam did buy the needed sparkplug for the generator, he was too exhausted (insert Scarlett O'Hara gesture) to install it.

Today, I got disconcerted, & as usual it brought tears to my eyes. Why, oh why, do I cry when I get frustrated? Argh! :-! It's so irritating--especially when an important matter is at hand. Thank goodness it was over the phone.
What happened was I was trying to get either more mileage, or more hours approved by Regional Center so I could bring a respite care worker with me on vacation this summer. I was denied, which didn't upset me as much the lame excuse.:-P

It doesn't matter anyway, because Shannan & I found a way around that. I'll just pay with hours! 70 hours will pay over $700, but that will only work as long Gov. Arnold doesn't do away with respite alltogether.

When I was born, Father thought I was perfectly normal & Mom felt I was just slow to walk, but when my grandparents saw me for the first time at age 7 months, they suspected something was wrong. I didn't move about like other babies. Grandad once told me he thought at the time that it was odd how well my legs flopped out froglike & how relunctant I was to sit up by myself.

Of course, it didn't help matters that a polio plague broke out in our area when I was 1&1/2. Like all the other kids in town, I too got polio. Only I never recovered. I seemed to, at first (I spent 1 entire day running around). A couple days later Mom saw me breathing with only my diaphram & saw my back curve into severe scoliosis within hours. It has since been speculated that the polio may have triggered the SMA to do its dirty deed in such a sudden way. 3-4 weeks later I was a quadriplegic.

Mom believed there was no reason for me to die if I got the proper assistance, so she moved us to her hometown in the US. Then, when most doctors said I was going to die by age 4 or 8, she did things her own way. Obviously, this was the right way because I am here.

In 2003 a genetic test 100% confirmed that I have SMA. The genetics counselor & I assumed that I have Type 2 since Type 1s are said to all die. Many months later I underwent an EEG conducted by a Dr. Yuen So, a leading researcher in SMA, who told me that everything pointed to me being a Type 1. He said he'd never heard of a Type 1 living as long me, let alone with as strong a phrenic nerve as mine.

I guess you can see why there are no words to properly express my gratitude & appreciation of Mom & to God for getting me this far. & it's no wonder that some deaf brothers gave me the sign-name "Stubborn" with the letter L. :)