What Happened to Nani

Emma could tell this story in only eight words.  By doing so, h0wever, she would most likely omit some of the more hilarious details of this sordid tale.  I will use her exact verbiage to sum-up each part of the narrative.

Fehmeen, Emma, and I picked up Maheen (Emma’s Nani) in the East Bay for a shopping excursion several months ago.  As we drove our Big Red Van onto 880, Fehmeen reminded Nani to buckle her seat belt.  Maheen shrugged off her daughter’s warning, choosing instead to focus all of her attention on her only grandchild.  As the freeway traffic came to a grinding halt, so too did the Rolling with ALS Boy van.

Now before we go any further in this story you should probably know one thing about our van.  In order to make it wheelchair accessible we had to remove the center section of seats.  So basically we have a driver’s seat, a spot for my power chair, and a bench in the far back of the van.

When our ride came to its abrupt stop, the un-seat belted Maheen kept right on accelerating.  She came to rest in the fetal position under Fehmeen’s driver’s seat.  To quote Emma, “Nani fell.”

Once we had confirmed that she was not seriously hurt, Fehmeen and I laughed until we cried.  Nani picked herself up, strapped herself in, and began to say how she would never again set foot in this van as long as she lived.  Our hysterical laughter from the front seats continued unabated.  To quote Emma again, “Mommy and Daddy laughed.”

About five minutes later we arrived at our destination, Red Lobster.  After we had all piled out of the van, Maheen noticed that she was a little bit damp around the umm, you know, umm, umm, you know where.  Before I dig this hole any deeper, I am going to allow Emma to do the honors by saying, “Nani peed.”

Typed by Michele one of Jason’s many belles

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Teacher Becomes Student

Even though it has been almost two years since I’ve stood in the front of a classroom, I still can’t stop thinking of time in 43 minute increments. Why 43 minutes you ask? Well, that is the length of time for a class period at school. For example, if I happen to glance at a clock at 9:30, I automatically think that there are about four minutes left in second period.

Based on that statement you might assume that I am still pining for my old day job. Sure, I would love to be able to teach again, but I am currently quite happy with my new job. I love the hours, the commute is way shorter and my boss is cute and adorable. It’s good work if you can get it.

Every morning I watch the boss eat her breakfast. She usually offers me some and of course, I always accept. She never forgets to feed me my gummies, but only after she makes sure that I’ve finished all of my oatmeal. When it comes time to pour an Ensure down my tube, she is right there taking mental notes for when this task becomes hers.

The boss lady is constantly pointing out her observations to me, and I always give her the courtesy of my undivided attention. On the occasion that she expects a verbal response, I do my best to indulge her. She asks each question in such a way as to require only a yes or no answer. Once in a while she will have my answer for me — like when she asks me if I want some pudding, she inevitably knows that I will say yes so she saves me the trouble.

I love to hear her speak. The next thing she says is better than the last thing she said. I hang on her every word –and as you know she has a lot of them.

I am so fortunate to have this opportunity to watch my little girl grow up on a daily basis, I almost forget the reason why I have all this time to spend with her. ALS may have forced me out of the classroom as a teacher, but my days as a student under the tutelage of Miss Emma are only just beginning.

RING! That’s the bell. Time for third period.

Typed by Blue Eyes and Leannie “Comma Happy” Oakley

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Look Ma, No Hands

This is my blog.   This is my blog on Eye Max.

I’ve been tinkering with this thing in the proverbial woodshed for about a week now and I do like what I see.   The learning curve isn’t as steep as I had dreaded.   Go figure.   Now if I could just get my wireless card to work properly so I don’t have to steal the signal from my neighbor.   Arf arf Cody!

I promise to write more next time but the girls are coming home and I don’t want to be typing when they get here.   Bye.

Typed sans hands by Blue Eyes

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Moving Violation

Over the years, I managed to earn five tickets for various moving violations. Two of them were for speeding in the Sacramento/Davis area. I remember singing along to a tape at the top of my lungs as I pushed the needle north of 80 mph and then seeing the black and white flash the blue and red. I was more annoyed at having to stop singing because my voice was in excellent form that day than actually getting the ticket. The other three were for rolling though red lights and stop signs. The stop sign one was on my bicycle in college and it was especially aggravating when I found out an hour later that this girl I knew got stopped for the same thing and she got out of it because she looked better in a tight t-shirt than I did.

By far the worst experience in getting pulled over happened when I was about nine years old. My mom blew through a stop sign in her VW Bug at the entrance of San Bruno Park. It must have been a slow morning for crime in the city of my youth because the cop that pulled us over was joined by no less than four of his police officer friends. It was the height of embarrassment for a kid of that particular age. Ask my mom about it someday, I am sure she remembers it as well.

Typing and Gagazi by Lhito

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Great SCOTS

Southern Culture on the Skids is the coolest band you’ve never heard of.  I discovered them by accident when I purchased some compilation CD from (of all places) Hot Topic.  It was love at first listen.  I even went to see them in San Francisco several years back.

The obligatory marquee shot.

Not only are their tunes catchy and full of energy, the guitarist absolutely shreds, the bassist lays down a fat groove, and the drummer even stands the whole time that he plays.

My friend Dooms and I scored primo balcony seats.

I love set list pictures.

Click here to get a little SCOTS in your life.

Typed by Marci.

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Emma Being Emma

One thing you should know about Fehmeen is that she doesn’t like messes. That’s not exactly accurate. She hates, despises, and loathes a mess. So you could only imagine what was going through her mind when she witnessed Emma accidentally spilling  some of her chocolate milk on our dresser the other night. At this point in the anecdote you may be wondering why Fehmeen didn’t just clean up the pooling liquid. Under normal circumstances she would have been on it like white on rice but at this particular moment  she was pouring an Ensure down my feeding tube. For all intents and purposes she was tethered to me by a thin piece of rubber tubing and could only watch helplessly as the spill grew to BP-like proportions. Amidst the chaos and subsequent panic Emma had beat a hasty retreat. She returned with her grandma who had a fistful of paper towels. Grandma told us that Emma told her that “Emma spilled some chocky milk and could you bring some towels.” The mess was contained and everybody was able to return to their everyday lives.

Chalk another one up to Emma being Emma.

Typing and GDing by Lhito

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An Ode

Fehmeen asked me to write a little poem for her open house at school tonight. I wrote it before and after my Eye Max training session yesterday. The Eye Max btw is friggin’ fabulous. I want to drive it around the neighborhood for a while before I turn it loose on Al Gore’s information super highway. I just thought that you’d want to know.

Now, on to the ode.

An Ode to Old LE

Do you remember middle school

Was it scary or was it fun?

Were you a straight A student

Or did you like to play in the sun?

For me it was a combo

Of frightening and nice

I guess I really liked it

Because I attended twice.

Once as a student in the 80’s

When I wanted to be Erik Estrada

And then as a teacher

At good old La Entrada.

I recall my first day teaching

Sixth and seventh grade math

It was as if I’d found my way

I’d finally found my path.

Parents, teachers, bosses

Support staff and the rest

Everyone was more than great

But I liked the kids the best.

We laughed a lot as we learned

We had an amazing time

Years flew by in minutes

The biggest smile was mine.

Without a doubt the hugest

Highlight of my life

Was that here I met a teacher

Who soon became my wife.

Every lesson planned

And delivered to a T

Paled in comparison

To the arrival of EZP.

If you were to ask me

What my proudest moment will be

I would have to say

The day that Emma goes to old LE.

Typed  in Tandem by Italian Man Servant and Bobble Mom

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Permagrin

My Top Five Most Recent Grins

1. This is my 200th post to this blog. Another 8800 more and I hit my goal.
2. The look on Fehmeen’s face as she discovered the wonder of iTunes. Better late than never.
3. You-know-what from last Thursday is scheduled for tomorrow.
4. There is a new episode of Glee on tonight.
5. I purchased a bean bag chair for Fehmeen last week.  It arrived yesterday.  Too bad for my wife Emma got first dibs on the chair. Looks like they will be sharing it.

/Typed by Lhito and Bobble Mom.

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What’s Eating ALS Boy

Appealing options for my continued safe mastication have been dwindling these past few months thanks to diminishing function in my tongue and swallowing muscles.  Gone are the days of chewing on a juicy steak, a double double (animal style), and even chicken parm. Say hello to more meals that include such staples as a tortilla-less burrito, applesauce, mashed potatoes, and ice cream.

My intentions for bringing this topic to the table (hee hee) is not to solicit any sympathy, it is merely my way of saying that I am one hundred percent okay with this particular aspect of my post-ALS reality.  This has not always been the case however.  It took a weekend of not being tempted to the point of uncontrollable salivation by my peeps enjoying pizza and chocolate chip cookies for me to know that I was completely cool with it.  Especially if it means that I could potentially spend more time with the fam and friends because I haven’t had a repeat performance of the quesadilla incident.  That would be something to get choked up about.

Typed by Bobble  Mom

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A Quick Update

This morning while Emma and I were watching Super Why on tv there was a knock on the door. Lo and behold, it was my missing mount. Yay!!!

Hopefully the wireless internet flashcard that I just ordered (and we need for the device) arrives before my eye gaze guru Amy R does on Wednesday.

If I could I would cross my fingers.

Typing and pudding feeding by Lhito

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