It is very hot today--probably in the 90's. Yesterday it was 84. Mom had a dentist appointment, so Eva stayed with me, or actually, I stayed with her because she needed to put away her laundry. (Sam & Eva always have tons of laundry; so much that they can hardly finish it in the 3 days they can use Mom's machines. Hmm, I wonder why it's more affordable for them to go to concerts, restraunts & not the laundromat.) It was suffocatingly hot at Nana's. But what was worse were the flies. Yuck. Especially in the kitchen. So Mom got that sticky paper, you know the ugly but effective kind, & put some by the freezer on the enclosed porch, & in the kitchen since they were buzzing by Nana while she was eating. Eva moved them to hang below the edge of the counter where the tacky paper won't be in the way or catch flies. So I'm going to stop now because if I can't say something nice, I shouldn't say anything at all. :)

After the meeting last night, Nancy Hermans came up to me & said, "Lilyan, we've been talking about you."

"Who?" I asked, feeling nervous/cautious. Nancy loves me, but still! She is so flat-footed & sometimes surprisingly insightful.

"Rashawn." (Rashawn & Esther Hricziscse had stayed with the Hermans for Mae Henry's memorial.)

"Oh . . . ok." Now I was curious, but didn't know what to say. Just really wished I could've been a fly on the wall for that conversation.

"We were talking about everything you do & Rashawn suggested that we ought to make a special effort & find some door-to-door territory for you to work during the special campaign."

Mom started to state all these conditions that would have to be met for me to go out, but I wasn't listening. I was too excited. Do you realize it's been at least 5 years since I've gone out door-to-door?

Marquette and I were talking about guys and how when you're seriously thinking of marriage, you need to know what you want before you look. Especially when you're hispanic chicas like us, there's certain qualities in men you really, really want to avoid. However, if these points aren't firm in your heart and mind, a crush can send them flying right out of your thoughts and land you in real trouble.
"So how do you make sure you remember what to look for when you're feeling . . . twitterpaited?" Marquette asked.
"Easy," I said. "You make a list and look at it regularly."
"Does it work?"
"If you have the self-discipline to look at it when you feel the first twinge of affection, and are honest and strong enough to stick to the list--then yes, it works."
Here's my list. I first wrote it when I was 11. Since then, some things have changed—for example, I no longer require Him to be 6 ft plus, red headed, or have violet eyes. *grins* There's no real logic to the order of this list, but some things are obviously of more importance than others.

My Future Husband…
… loves Jehovah more than He loves anybody else on earth, including me.
… is a longtime pillar in the congregation, serving as a well-respected pioneer/ministerial servant/elder.
… is somewhere between my age and fourteen years older than me.
… either is/was a Bethelite, or is reaching out to some kind of full-time service.
… is genuinely kind and loving to all; a sincere people person.
… is a man: self-confident, not arrogant; commanding, protective, tenderly loving.
… has a level head, even during emergencies.
… is strong physically, mentally and spiritually.
… admonishes and corrects in a kind and gentle manner.
… is patient and calm.
… is an explorer, always wanting to learn more.
… loves kids and is good with them.
… gives me such a sense of trust and safety that He can do things like look over my shoulder while I work and I will not freak out.
… understands and accepts the fact that I have issues with my parents.
… protects me even from myself.
… lets me, and others, know He is proud of me.
… enjoys me and everything about me.
… trusts me with His heart and his tears.
… shows and tells me He loves me every day.
… takes my wellbeing very seriously.
… takes over when I am too upset or too tired to do anything, even make simple decisions.
… likes to cuddle.
… has big, strong hands.
… thinks I'm hot.
… enjoys quiet.
… appreciates art and music.
… likes to read.
… likes animals.
… has a sense of humor and can tease, but not in a mean way.
… is either my height (5' 8") or taller because I am willing to admit, I'm too shallow to be with someone shorter than me.
… is at least willing to dance with me. That means no lame excuses, groans, or rolling of the eyes.
… shares the cooking and cleaning duties.

Perhaps I've set myself up to fail, listing things only a perfect man can fulfill. All I can say to that is Marquette made her own list and is now happily married. If some of the things I list seem too much, even for a perfect man, … well, it's not impossible because Sarah Broden found Mac. If I have to wait 1,000 years, it will be worth it. Jehovah will send him my way.

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. :)

My mouse/trackball died yesterday. That's why this morning we went to the doctor for my second chickenpox vaccine as it was on the way to all the computer stores. However, not one store had an acceptable mouse/trackball. The buttons were too far away from the ball. So we are going to order one online. What will I do if Logitech ever stops making the Trackman?

This afternoon I worked and struggled to print out my scriptures for tonight, but I succeeded!

I must remember to get ready for the writers group next Tuesday.