Why did you lose 80 pounds?

Because I want to be able to do things like this:

Two Years of Surfing

I made this movie for my son's teacher because she's never seen Javy surf. Javy has now been surfing for two years.  The music is "Free" by Donavon Frankenreiter with Jack Johnson.  

A Couple of Movie Recommendations!

     First, I just want to recommend the documentary, "The Horse Boy" to everyone, whether you know a person with disabilities or not.  Even if you don't know someone, there's a great chance that you will meet a person with disabilities and this movie gives a neat perspective from the vantage point of the parents.  Its actually about a boy with autism, but I can totally relate with his parents.

     One of the points that it brings up is the fact that autism is becoming more and more common and we need to find a place for everyone in our society.  I love that.  No more hiding them away in an institution.  We should embrace their differences and see their value.  And I have proof that everyone, no matter their abilities, has a place in society.

  

     The picture above is a card that Javy's class made for him for his birthday.  The teacher gave them the heart cut outs and told them to write whatever they wanted for Javy.  These kids are physically able,  but have other issues that cause them to be in a Special Education classroom.  Javy's teacher explained to me that the student who wrote that Javy taught him how to smile, literally never smiled but he lights up with Javy.  Another student wouldn't write their letters, but when asked to write for Javy, began writing.  I like to think that maybe because they met Javy, these kids will overcome their adversities and be able to follow their dreams.  Javy can't walk or talk, like most people, but he does have a way of inspiring people.  

     The other movie I want to recommend is "Step into Liquid".  This movie explained something to me that I had no way of understanding, why surfers are the way they are.  It made me realize why Javy lights up when he is surfing.  It doesn't matter that he can't do it by himself or stand up by himself, just the whole experience has him stoked.  

     Originally, I said that I wanted to lose weight and be healthy so that I could surf with Javy.  I realize now that is not really my dream and Javy doesn't really need me there.  He's got the bug, with or without me.  That is pretty cool.  

     Javy still has taught me how to surf, though, metaphorically speaking. I've overcome a lot of my fears and learned to ride whatever comes my way. 

 "I'm not afraid to die.  I'm not afraid to live."- U2

Perspective....

A thought occurred to me.  I have a lost 77 pounds, so far, since last January.  Javy is about 75 pounds, therefore, I have lost one Javy-sized person.  Just to put this in perspective, here is a photo montage:

This is me plus one Javy

This is me plus two Javies!

This is me plus one Javy!

The magical ipad!

I decided to merge both my blogs.  The truth is that I am a member of Javyland and there's no reason for me to have a separate blog just about me.  All of my goals and aspirations are because of Javy.  So there you go.......

Javy got his iPad.  I'm not sure if I've ranted about this before, last year, Javy's speech therapist started using an iPad at school for communication.  Instead of Javy using a picture board to make decisions, he can use an iPad.  It's actually perfect for him.  They're not as cumbersome as most Assistive Devices that have small buttons to push.  He can swipe and touch, no matter how tight his hands are.  But the problem is that the school won't let him bring it home.  But its for communication,  you say.  I felt like it needed to be used consistently, at home and school.  This was a great worry of mine for a few months.

It just so happens that someone who happens to work for Hawaiian Airlines, asked me how Javy was doing.  She has known Javy since we moved to Kauai, because we fly out so much going to doctors on Oahu.  I guess, since this was the foremost worry in my head, the conversation turned to the subject iPads and me ranting about the school not letting him take it home.  I explained how I was trying to save for one, even collecting cans and bottles that I find on the road while I walk my dog.  It was almost like I was praying-my heart bursting, laying out my greatest desire.  Work distracted us and we went about our business.

Later, that day, this dear person approached me and said that a few of the ladies who work together for Hawaiian Airlines would like to buy Javy an iPad.  I started to cry, it was such an unexpected blessing. I never imagined, coming to work that morning that such a great relief could happen,  just talking to a friend.  So they did, they bought Javy an iPad.

IPads are really an amazing piece of technology.  Javy responds to it, instantly.  He has been able to tell me what he's wanted when he's fussy and I can't figure out what is going on.  He can also read stories by himself.  Well, he's not reading it, but he can touch the screen and the iPad magical voice reads it to him.

Also, I found this app called Pictello.  I can create picture stories for him.   I think that this is really good for stimulating his mind.  I plan on making stories of everything.  I'm working on one of all of his friends and family.  More than that, this app will relieve another worry of mine.  This may seem silly to some, but I often think what if something happened to everyone who really knows Javy.  I mean truly knows how to read Javy, knows how really funny and lovable he is.  What he likes, doesn't like.  What his faces mean.  This app can create a legacy for Javy to carry on in the future without me.  Hey, I'm not trying to be depressing, it's a reality of life.  Think about it, most people are able to communicate their history and heritage.  Javy won't be able to and I will not be around forever to do it.  I want everyone to know how wonderful he is and not to take him for granted.

Thank you to the ladies at Hawaiian Airlines and thank you, Steve Jobs!  May you rest in peace.  

Lesson #3: Hold your head high!

Try this!  Whatever you're doing- laundry, cooking supper, walking through the grocery story, hold your shoulders back with back straight and saunter, with your hips swinging and your head held high.  Don't worry about people watching you or if you look like a fool.  It feels good, doesn't it.

Whatever Javy does, he has no shame.  He doesn't care what people around him think.  If he thinks something is funny then he will let out a deep belly laugh, even if its at the most inappropriate moment ever. He enjoys life and if he's not then he doesn't hesitate to let someone know, until he's happy, again.      In order, to accomplish anything, Javy has to work really hard, whether its pushing himself up to standing, crawling across the floor.  To move his body, he has to overcome a lot of muscle tone but I've never seen him look embarrassed or ashamed, once.

I made two personal benchmarks in July.  First, I made it to under 200 pounds.  And I ran for 30 minutes straight.  I don't feel like I could have made these benchmarks if I cared what other people think about me.  When you start making transformations in your self, everyone is watching you.  "They" wonder what you're eating and what you're doing.  I believe most have genuine interest, sometimes, perhaps, some aren't so respectful.  It's funny but as soon as I started eating a little healthier, a lot of people automatically started making comments, like ewwww, brown rice, why are you eating brown rice.  Or just a salad, that's all your eating.  I just simply had to blow it off and remember-this is personal, it's not about them.  All I can do is hold my head up high and say, "Yes, brown rice, it's awesome!"

As far as running and exercising are concerned, its tough.  First of all, I really don't have proper exercise wear.  I have a pair of Sketcher's that I got cheap at Ross and baggy shorts and shirts.  I live in Hawaii and I see a lot of people running and walking in my neighborhood.  There's some pretty good looking people-the girls wearing their cute little sports bras and the guys with their nice tank tops and all muscles.  I started running in June and I had already lost a lot of weight, but I still have to wear two bras just to keep from giving myself two black eyes.  In fact, everything jiggles-thighs, arms, belly.  But I know that the only way to stop them from wiggling is to move.  It's the only way.

So besides surfing, which I still feel scared to do, I'm gonna add two more personal benchmarks.  I'm going to run the Kauai marathon (next year, because I can't afford the fees for this year) and wear a bikini by next summer.

Success is Sweet!

I survived my first week of vacation!!!!

And what did I do on my first week of vacation?  I did this:

My shed!

Yes, I put up a rust-infested, dilapidated old shed!  Okay, it's not pretty, but the key word in that last sentence was "I" and (maybe a little help from mom).  This became my first WTF? project, in other words, WTF did I get myself into, project.

The shed in it's original location

A little background: I love my house.  It's my favorite all time place that we've ever lived, I love it that much.  But the yard is lacking, well, it looks like it has been napalmed.  It has some great trees and plants but it wasn't taken care of properly, probably since the husband of the previous owner passed away.  

About a month ago, I decided that it was crucial for us to have a nice cool spot to relax with a cold or hot beverage.  The only good shade tree, a nice big avocado tree, had this rusty old shed underneath it, rusty, albeit intact.  My inner thrifty person struggled with my chillaxin person- tear down a perfectly good shed for a place to sit and be lazy, hmmmm.  Late at night, in the wee hours of the morning, when I do my best thinking, I devised a plan. 

I would just simply move the shed to a more suitable locale in my yard, not the landfill.  In the wee hours of the morning it seemed really, really simple.  

I began by detaching it from it's base.  Except for trying not to get stung by scorpions, that part was easy.  According to my plan, I would simply lift the aluminum walls and roof to the new location.  That part of the plan turned out to be right out!  Who knew that aluminum could be so heavy?  During the light of day, I came up with a new plan.  Take it apart in sections and put it back up in sections.  For a few weeks the individual pieces of the shed were spread all over the napalmed yard-the walls, the roof and the frame.

Finally, S-Day came.  I dropped Javy off at school.  (I forgot to mention that I could only work on this project while Javy was at school.)  I came home and had another cup of coffee.  I couldn't procrastinate any longer.  I grabbed a few tools, mom followed behind me.  She threw out a few "You shoulds" and "I woulds".  I just stared blankly at the ground.  My mood was so foul and I came really close to scrapping the whole project, it really seemed impossible and worthless.  But something wouldn't let me stop.  That first day, we managed to get one side of the wall up and I promised mom that my attitude would be better.  

And I did, I kept going, whatever wouldn't let me stop, continuously gave me the inner strength to keep going.  I won't lie, a few tools were thrown across the yard and the neighbors probably heard one or two curse words.  But we got it done.  And I learned a lot about myself in the process.  First of all, not only am I physically stronger being 60 pounds lighter, but quite literally, mentally.  I really believe that one year ago, that shed would've been scrapped after the first five minutes of that project.  When I got stuck with one thing, I just told myself to keep moving until it was all done.  

Secondly, I was faced my weaknesses head on.  I never realized how inflexible I am, especially when it comes to stuff I don't really want to do.  The mental preparation that I put into things that I'm not whole-heartedly into is so immense that when I get side tracked, it throws me into a tailspin.  That's how it was working with mom, we'd start with one particular plan and then she'd throw in a "why don't we try this" and I would freak.  But once I realized it, I actually started listening to her and that's one of the reasons we finished by Wednesday.  

And this is what I learned:  Losing weight and getting stronger is not about looking pretty and fitting into smaller clothes.  For me, personally, it's about not running away from hard things.  

  

NORMALCY! A good thing?

Mr. Cool!

Well, my two week vacation started Sunday.  I've been home since Friday, but Friday/Saturday are my regular days off.  No work for four days and ten more to go.  I've got to say.....I'm exhausted.  The easy-going-Javy days seem to have gone away.  He seems to have become......(insert eery music) a normal 10 years old.

Let's take dinner tonight (I work the night shift, so I'm not normally around for dinner.  I cook it and leave it up to my mom to make sure Javy eats it.)  I cooked a lovely pot roast with homemade mashed potatoes and steamed cabbage, yummy!  Well, Javy, who appeared to be about to burst into tears at any moment, did not agree it was that lovely.  In fact, he acted as if it was tasteless.  He refused to pick up the fork to put it in his mouth so I poked the food into his mouth.  He let it hang there, even poking his lip out a few times.  I'll be honest, I was getting a little frustrated, until my mom offered, "Javy, do you want a peanut butter sandwich?"  He immediately perked up and gave out a little laugh, which in his world is an affirmation.  But I refused to relent after working so hard to create a five star meal.  Instead, I got out the good old Heinz ketchup and squeezed it all over the plate.  He ate every bite after that, freakin' stinkers.  

A meal fit for a Javy

Engrossed!

But wait there's more:  After dinner, his grandma had a television show that she wanted to watch.  Well, Javy who is an avid fan of Nick Jr. wasn't too agreeable about letting grandma watch her show.  He started whining and shrieking at the television- Sorry, Kyra Sedgewick, he doesn't like The Closer.  But, again, I refused to let him have his way and tried to distract him with other games.  It didn't really work.  So after The Closer, Yo Gabba Gabba came on the television, as if by magic.  His face cleared up and the laughter, dancing and singing began.  No more fussing!  

Javy using me as a recliner.  He watched Yo Gabba Gabba like this.
It's a 30 minute show.  Who needs pilates?

Leg Massages

To give Javy credit, he's actually still a pretty good guy and fun to hang out with.  Who else would swim with me for an hour at Salt Pond and jam out with me on the way to school and give me a leg massage.  And he does work hard.  He spent half the day at school and he walked to his bed this evening (with the help of a walker).  I may be exhausted at the end of my vacation, but I wouldn't give it up for nothin'!      

Vacation!

Fat girl in a skinnier girl's body

It's hard taking whole body pictures of yourself, but here's an updated photo-waist is about 34 inches, hips about 39 inches.

People are starting to notice, especially, the ones who don't know me well enough to know what I've been doing for the last five months.  Except for the Starbuck's chicks who have noticed my absence.  People who are just meeting me, probably just see me as another overweight American, because I've still got a long ways to go.  But if they're perceptive, they  may notice some muscle definition and my stellar posture.

But I've encountered an interesting phenomenon that I really didn't think about.  Before, I had thought of myself as a skinny girl in a fat girl's body.  I would forget sometimes that I was as big as I was, until I looked in the mirror.  I've always been athletic and loved playing sports, but I've also always been big. I was the cute little chubby kid, and then the stout, curvy teenager and finally, the blubbery middle aged woman.  It didn't bother me until I noticed that my body didn't work the way it used to.  So I never thought being skinnier would bother me.

What I've noticed is that a lot of people who never paid me any attention are now starting to pay attention to me.  I find myself asking, "Who the hell is that guy looking at?"  I forget because I'm used to being looked over.  I'm not very comfortable with it.  But it's not just guys, women, too, like now I'm worthy to be talked to.  It really brings awareness to me how physical appearance really affects people's judgement of others.    I'm working really hard and I'm proud of what I've accomplished.  I just want everyone to succeed at their goals and be happy with themselves.

I know I've got to change my perception of myself.  But here's a warning to all those potential "new friends":  "Move along!"

Cruizin'

I was driving home, just now, from Salt Pond.  I passed this girl, I've seen her around before.  She obviously works at McDonald's because she is always wearing a uniform when I see her.  She inspires me.  She walks to work.  Not only does she walk to work, but her gait is not straight.  One of her legs always stays straight, while she swings the opposite arm.  I've seen her all over Hanapepe, but from where she was today, now I know her walk to work is about a mile and a half, and includes a pretty tough hill.  I came pretty close to offering her a ride, but I stopped myself.  I wouldn't want anyone to give me a ride, I'd have my earphones in and be cruizin', too.

I want Javy to walk, too.  No matter how he does it, I want him to do it.  Not necessarily because he wouldn't need his wheelchair anymore and his life would be easier.  No matter what, he'll always have mobility and access to most things.  Those days of being bedridden and in an institution are over, thank God.  No, I want him to cruize on his feet because I think that he would think it's fun.  I believe he'll get there one day, it  may be funky (in a good way) but he'll get there.

I made this video Sunday of Javy trying to stand up.  It's kind of hard to see because I was right beside him.  But the remarkable thing was that he was pulling himself up with his legs and not hold onto anything.  

Lesson 2 - Get Yourself a Plan

For Javy, planning is easy.  He sees what he wants, he moves forward.  Sometimes, things aren't going the way he wants.  He looks around the room, sees who is around.  From experience, he knows what methods will work to get what he wants.  If its grandma, he'll wheel himself over to her and make with the eyes, maybe he'll let out a little sweet whine.  Grandma says, "Oh, I know what you need, a cookie."  If it's me, he doesn't fool around-just goes straight to the fussing so the only thing I can do is stick a cookie in his mouth.  (He knows I'm dense)

So what's my plan?  First, what's my problem?  I'm overweight with a bum hip and fear the ocean.  Easy-Start with losing weight, that'll help my hip, then as I become stronger, I will feel more in control in the ocean.  Sounds like a game plan.  Anyway, it's what I'm going with.

I'm still in the phase one part of this plan.  Did I mention that I'm 54 pounds lighter (as of today, June 16th, 2012) than when I started this excellent adventure?  So I've had success.

At first, way back in January, honestly, I didn't really have any plan.  I just started bringing my lunch to work everyday and doing a little exercise when I could.  You see, I have a basic policy: I don't do anything that Javy can't do with me while he's home.  That means if anyone invites me to do something, I won't go unless Javy is at school or asleep or its an activity he can enjoy.   I don't waste my time or my money at a gym.  I don't date, I don't splurge on "me time" at spas.  Well, wait a minute, I do have "me time", it's called going to work.  That's my personal decision and I'm much happier with myself for making it.  I have done all those things in the past - wasted time away from Javy to spend with some guy, got my hair and nails did at some fancy salon.  Basically, for me, I couldn't relax and enjoy it.  I love every minute that I spend with Javy, well, maybe not so much when he's whiny and fussy, lol.

I wish I could describe to you, how depressed I was because I really couldn't see any hope.  I remember watching an episode of the Biggest Loser, thinking, yeah easy for them to lose all that weight at a resort with no family or real life distractions.  I was probably eating ice cream or drinking rum or a beer, my F-You attitude.  But I did, eventually, get on my knees because when the pitiful human brain can't summon any hope that means it can only come from someone much stronger than my pitiful human brain.

I was on a day shift at work when I first went into action so there was no going for long walks after work. I bought this mini-stepper at K-Mart, because something is always better than nothing when it comes to weight loss.  My first time, I could barely make it to two minutes, I was so out of shape.  Then one day at work, totally out of the blue, a co-worker noticed that I was eating somewhat healthy.  He mentioned an iphone app called "MyfitnessPal".  I downloaded it right there in the break room and I haven't stopped using it since.  I just log everything into it that I eat, you can even scan barcodes of products.  All I gotta do is just make sure that I eat the correct proportions.

And there you have it: A Plan.  I mean it's not rocket science, you eat less, you will lose weight.  But the key to my plan is my resolve and I really don't know where it is coming from.  It must be supernatural-it's stayed with me for 6 months.  Failure is not in my future plans, either.

But I don't want this to be a blog about weight loss.  It's about following your dreams, conquering something that has evaded you.  It's about learning to surf.  I'm about half way to my weight loss goal and I've already conquered so much more.   

The quandary of sleep

Sleeping is a pretty basic thing.  Everyone does it, no matter their abilities.  It's one thing that I never thought I'd have to worry about for Javy and it was a surprise to find out that I did need to worry about it.    And it's not really the sleeping part I have to worry about, Javy has no problems with the sleeping part, either.  The question is where does he sleep?

You see, he can sleep on a normal bed but there's always the risk that he'll fall off or climb off (which he does).  In the past, I've just put the mattresses on the floor.  That way if he falls off then it won't hurt too much.  But then there's the problem of getting him in and out of bed.  Javy weighs over 75 pounds and he's over four feet tall.  That is a recipe for a bad back.

So last fall, I thought I was being clever when I asked the Shriner's doctors for a prescription for a hospital bed.  I found out from the local medical store that insurance pays 80% of the cost for a hospital bed.  The sales rep took the prescription, got my insurance info and then she said she would call and let me know when everything was approved.  I walked out of the store, kind of puzzled... Don't I get to pick something out and let them know what we need.  I wasn't expecting an Ikea warehouse, or anything....   Maybe, at least, perusing through a catalogue.

Nevertheless, my optimism did not falter.  A few weeks later, Gammie's Homecare called and wanted to set a time up for delivery of the new hospital bed.  We were in transition ourselves so I asked if I could wait until we got set up in our new home.  Meanwhile, my mom convinced me to go back to the store and at least see what they would be delivering.  And yep, it was a basic hospital bed.  I told them that this would actually make it more dangerous for my son  because he would climb over the meager railings.  I told them that I was hoping for something that raised up and down for easier transitioning from bed to chair or floor but with more substantial railing.    Something like this: http://kayserbettenus.com/ida.html.  Nope, they didn't sell those.  I asked about getting some other kind of railings for the bed that they did supply.  Nope.  So I cancelled that order, no use going through all the trouble for something more dangerous.

I researched some of the pediatric beds and they actually do take insurance and even give step by step instructions for getting insurance to approve them.  I was really excited, I thought I could circumvent the system.  I called Javy's nurse and she readily agreed to help.  She called the company, but they don't sell directly to patients, it has to go through a medical supply store.  And guess what, Gammie's Homecare isn't one of them.  The nurse found a couple of companies on other islands that they would sell to, but these stores didn't come to Kauai.  (Javy has the greatest nurse because she did all this research on her own.)

So we were back to putting the mattresses on the floor and at least if he fell off, then he wouldn't fall too far.  But then the centipede incident occurred and I learned quickly not to put mattresses on the floor here.  I have two twin beds that came with the house.  I set them up side by side in my room and created this huge bed.  Javy began sleeping in my room, with the mattresses off the floor.

It finally occurred to me, what the heck, are children with special needs not entitled to a good nights rest or at least their mommies.  So I asked a couple of mommies of kids with limited mobility issues, who'd been at this for awhile.   My survey results were as follows:  Their children slept in the same beds as them.  It was kind of crushing because sleep is at least one thing that Javy can do on his own.

On the other hand, I actually found that I slept better with Javy next to me.  I was sleeping without worry, I didn't wake up at odd times in the night to check if he'd fallen off or been carried away by centipedes or changelings.  It was kind of nice.  However, the novelty soon faded as I began waking up to feet and a head in my back.  And I just wanted to be able to turn a light on and read before bed.  It's the little things, I know.

In the meantime, we began fixing up Javy's room.  I put rubber flooring down in his room, painted and sealed the room better.  I'm proud to report that Javy is now sleeping in his own room.  I put one of the twin beds in his room and he has not fallen off.  I still wake up every now and then to take a peak, but it's worth it.  He's independent.

Lesson 1 - Get Your Head in the Game

 "Ya gotta get your head in the game, Mom!"  That's what Javy says.  Well, he didn't really say that, I mean, if you know Javy, you know that he's nonverbal.  But being Javy's mama, I've become proficient in the Javy-ese and that is my interpretation of what he said.

I watch Javy.  When he is being made to do something that he has no interest in, his head goes down and he starts to giggle.  The other morning, when I dropped him off at school, I decided that it was time for him to push himself to his classroom.  I pushed his wheelchair onto the sidewalk and said, "Ok, Javy, let's head to class.  Straight ahead."  And I took my hands off his wheelchair and began to walk toward the classroom.  I look back at Javy and his wheelchair had not budged an inch.  Coaxing only made him giggle.  I got all excited when he finally put his hands on his wheels, but he only did that so he could dance, rocking back and forth.  We did the hand over hand method the whole way.  When we got to the slight incline, he did began to push himself, but only so he could roll down the hill.  Yeah, it was about a 20 minute walk.  We could've walked it from home, faster.

But crinkle a bag of cookies from across the room and see how fast he can get to you.  When he's swimming, he's unstoppable.  His arms and legs are moving.  And his game face, watch out, when he has his game face.  He's unstoppable.

Last summer,  I decided that I wanted to surf with Javy.   I decided to lose weight.  I came up with this plan where all I had to do was lose 3 pounds a month and by the time I was forty, I would be a normal weight.  I started this on my birthday, in August, when I turned 38.  The first month I cut out beer and I did lose my goal weight for the month.  My starting weight was about 245.  Four months later, I weighed 263 on New Year's Day.  The problem, my head wasn't in it.  When stress and life started slapping me in the face, I had no other coping mechanism but the one's that I had counted on for thirty-eight years-chocolate, grease, salt and sleep.

This is me, last summer about 245ish.

This is me, around January 2012 about 263ish.

Oh, boy, I was depressed.  But I couldn't see any way out of it.  I looked at my circumstances-I work eight hours, I came home and took care of Javy.  When he went to bed, I went to bed because I had to do it all over the next day.  It felt like being thrown in a hole and the only tool I was given was a shovel.

 I did start cooking a little healthier and I bought a mini-stepper so I could do a little exercise while Javy played.  The first time I tried it, I only lasted two minutes.  But something is better than nothing, I always say.  I resigned myself to the fact that these were my circumstances and I would just be a big person for the rest of my life.  At least, I have my good personality and nice face, damnit!

Then the big moment came.  My mom had a doctor's appointment with an orthopedic surgeon to see about having her hips replaced.  She had them X-rayed and they are pretty much bone on bone, both sides.  It's pretty much a miracle that she can even walk, the doctor said.  That's when it hit me like a herring in a Monty Python skit.  If I don't do something now, I'll never surf with Javy.  This hip thing is genetic because mom's dad had it and his mom.  And my prognosis would be much worse than theirs because I've been more inactive and I'm heavier than they ever dreamed of being.  

Five months later, I haven't looked back.  My success has come from fixing my mind, first.  That's what I failed to do all of those years before.  I thought if I lost weight then everything would be perfect and I'd be beautiful and happy.

I haven't had any desire to fall off the wagon or revert back to my old ways.  When I feel stress, I'm prepared.  I have alternative ways of dealing with it now.  Not to make anyone gag, but physical activity is the best way to deal with it for me.  It's my way of telling my body that I have control over it, not the other way around.  If I can handle that then I can handle any problem.   Also, herbal teas are a great way to reduce stress, too, especially kava.

This is me now, at about 217. 

Coming soon.....Lesson #2: Javy says "Mom, you got to get yourself a plan."

Introduction

I am not a remarkable person!  I'm actually kind of boring, or rather simple.  I wouldn't read about me, there's really not much to me.  According to Facebook, I've lived in three place: Texas, Alabama and Hawaii.  (Shhhh, don't tell, but I also lived briefly in Maryland and Virginia.  But I don't want Facebook to know lest I get offers to join groups like "You know you lived in Maryland....Which would certainly include, "if you had to run home from school everyday dodging bullets")  I've been a civil servant for fifteen years, third generation civil servant, at that.  My bachelor's degree is in geography and history, for crying out loud.  Run away!

But I did do something remarkable, once.  I gave birth to a most amazing person (You can read about him in my other blog, Adventures in Javyland) and he's teaching me how to surf.

The idea came to me one day, last summer, while I was watching Javy surf that I too, wanted to surf and be free like Javy.  The problem: I'm a strikingly obese person, with a bum hip, a pinched nerve and a healthy fear of the ocean.

It's been almost a year since I conjured up this dream.  I've had some success and some failure.  So despite my boring, painfully plain life, I hope that someone will get something out of how my son has whipped me into shape.  But you've been warned.......

Summer fun and Seizures

As summertime descends upon us, the roller coaster of life has started up a steep incline.

Javy started having seizures, again.  He almost made four years since his last seizure.  In fact, in July of 2010, he had an EEG and was found to have no seizure activity so the doctor took him off seizure meds, entirely.

Seizures suck, in case, you didn't know.  Javy had his first seizure in August 2005, or the first seizure I had ever witnessed.  It was the day after Hurricane Katrina hit New Orleans.  We were in Northern Alabama at the time and we had storms all night, from the remnants of Katrina.  I had woken up early, concerned about the possibility of severe weather.   Around 5:30am, I was passing by Javy's room on my way to the bathroom when I heard Javy make a grunting noise.  I went in to check on him.  His eyes were half open and his tongue was sticking out with foam coming out of his mouth.  His arms and his legs were moving up and down.  I had no idea what was going on, I thought he was dying.  I lifted him off the bed and carried him into the living room (probably not the best thing to do, but I had no clue he was having a seizure), crying the whole way.  My mom had no idea, either.  I called 911.  We waited while Javy's whole body twitched to it's own unique rhythm.  I'm pretty sure that was the longest five minutes of my life.

The ambulance came and Javy's body kept twitching.  I heard the EMT say something about a seizure.  Seems like I rode in the front of the ambulance, but I don't remember.  I remember it was raining and windy and we had to go around some fallen limbs in the road.  But what is burned in my memory is what happened when we got to Huntsville Hospital's ER.  I came around to the back of the ambulance, Javy's body had stopped twitching and he was crying.  The EMT handed him to me, but he looked at me like I was a stranger and just screamed.  Nothing I could do could console him.  Later that morning, he fell into a deep sleep and woke up a few hours later, like nothing had ever happened.

What we learned later after spending some time in the ER is that Javy had a grand mal seizure or tonic clonic seizure, as they are known now.  The reason he didn't know who I was after the seizure was because he was going through a postictal state which is marked by confusion and memory loss.  It's kind of like the brain's way of healing itself from the trauma of the seizure.  Sometimes I wish I could go through a postictal state.

Eventually, we became old pros of seizures.  They usually occurred while he was sleeping, in the early morning hours.  They were controlled pretty well by meds.  When he started outgrowing his dosage, he would start having them, again.  Then a couple of years went by and he never had any and the good neurologist decided it was futile to take medication, anymore.

Not taking medication was a huge relief.  First of all, it freed up a few extra dollars and it freed up our mind.  Javy doesn't take medicine easy, so we always had to plan, keeping something on hand that Javy would swallow his pills with.  Jelly works best.  So if we wanted to go out or travel, we had to carry the jar of jelly with us.  Secondly, we found that after the medication had left his system, Javy became a new child.  He was much  more alert, making eye contact more.  He began pushing his wheelchair around on his own.  There were less episodes of him just slumping over in his chair, giggling uncontrollably.  

I'm glad that we believe in enjoying the moment, because they're back!  It was nice while it lasted.  Why are they back?  Well, that's a good question.  Javy's pediatrician says that sometime children who seem to outgrow seizures starting having them again when they become adolescents.  Yes, we can all thank hormones!

Javy is back on Keppra and today was his first day on his full dosage.  He had three in less than a month.  One was a tonic clonic, just like the old days.  The other two were kind of new.   It was like an absence seizure, but his tongue twitched.  My goal is to keep his life as normal as possible and try not to have the attitude of, "Oh well, he's on seizure meds so if he's a little tired that's understandable."  I don't know if it will work, but we gotta stay positive.  He's made great strides and I don't want him to lose any of it.  Only time will tell....

A Remarkable 10 years!

I realize that some of you, who follow this blog, may not have known Javy since he was born.  So I wanted to introduce some of Javy's baby pictures.  Now I could just post pics, but that's not my style, noooooo!  Of course, I had to make a movie, because I love my iMovie software.  My goal is to show his growth, his progression and, also, his regression so you can become even more familiar with Javy. One more thing, the music is Javy's choice......

We need a hero!

I got a jazillion things running through my mind, right now!  In fact, I don't even know what to title this blog.  So I'm just going to go with it.....

I think society has pinned this unrealistic expectation that parents of kids with special needs, should be activists.  Two recent incidents that occurred to two different friends, who live very far apart (Alabama and Hawaii) has gotten me thinking about this.  Both of them related to schools.  One day, my friend in Alabama posted on her Facebook page that she had just had an IEP meeting with the school and they gave her two choices:   "let us discipline him (paddle) or do home bound cuz they can't handle him".  She chose to keep him at home.  Before I commented to give her my support, I read through all of the previous comments.  They were full of inflammatory phrases, "that's wrong, you should........, etc"  Kind of like she had just given up, because she chose to just teach at home.  I for one think this is very brave and totally understand where she is coming from.  Reading this brought it all back to me....  The roller coaster of life with a special child.


When Javy was in Kindergarten, I chose to take him out of school, too.  Day after day, he came home so sad.  When he got off the bus, he would have his head down.  This was a total personality change for him.  I began visiting the school at odd hours.  My observation was that he and the two other students in wheelchairs would be on one side of the classroom, while the rest of the class was sitting in desks, facing each other in a circle.  I tried to talk to the teacher about this.  But the classroom was small and really not suitable for a special ed class.  There were a lot of kids in the class.  She had 3 aides.  The fight had to go higher than her, because she was just doing what she could with what she had.  I withdrew him out of school (Kindergarten isn't a requirement in Alabama, anyways).  Yes, I feel bad for the other little girls in wheelchairs, who had to stay there, but I just wanted my little boy to be happy.  I did write a letter to the principal, but that is as much activism as I could muster.  


You see, and this is my point, between the working 40+  hours a week, providing just the love and care at home for Javy, the doctor's appts and the OT, PT, and Speech Therapy, once a week that I was taking him to at that time; forcing school administrators to do what they're supposed to do anyways, seemed out of my league.  I was able to give him what he needed at home, so why not?  I think that most parents, unless they're bionic, are gonna choose what is overall best for their children.  We shouldn't have to be activists for special education.  The schools should just obey the laws that have been set in place.   What we need in order for that to happen, is a person, without kids with special needs who can fight our cause objectively.  I'm not sure who this hero is, but maybe they're out there somewhere.  In fact, that should be the title of this blog.    


I have been at this for 10 years and this is what I've learned so far:  Teachers are not miracle workers, and neither are doctors.  Ultimately, we are responsible for our own children's well-being and that is where we should be expected to focus.   

Just a phase????

Javy has been screaming....  A lot, lately.  It seems to be a temper tantrum.  He's like a completely different kid when he does it.  It usually corresponds with a time, like suppertime or snack time or Yo Gabba Gabba goes off.  He'll start these high pitched screeches and he'll flap his arms.  When the Shriner's nurse practitioner was trying to examine him, he was so mad at her.  He was looking at her, screaming and stiffening up, making her job, completely impossible.  This was so bizarre to me, I told her that it was like a completely new personality.  He's usually flirting and engaging, or he just ignores the person.  He never screams at people, well, just me.  In the back of my mind, I'm a little worried.  The nurse didn't seem concerned when I shared my concerns, just said he was a typical preteen.  Maybe, but I still wonder does he hurt somewhere, or is it another symptom of his undiagnosed disorder.  So what do I do with this information.  Do I spend a $15 co-pay and make an appointment with is regular doctor?  Dr. Raelson, Javy is screaming, a lot.  Ugh!

*Click Click* There's no place like home

So we've been in our new house now since November.  Things are going pretty smooth, as smooth as they can.  I don't know why but it really does make a difference when it's your own.

The house was pretty much move-in ready, but I got big plans to customize it for Javy.  I've already started on his room.  I painted it and put up some shelves that the right height for his wheelchair.  Now I just gotta put some rubber flooring down, maybe in April when I we get three paychecks.

Saturday morning buttermilk pancakes

Overall, the house has been everything I've expected with some nice surprises.  First of all, there's the avocado, mango, banana and as of yet, unnamed citrus trees.  And then I found four mature tomato plants hidden amongst the weeds.  Also, they had actually put in some high end appliances.  I didn't really notice these things until after we had moved.  The stove is awesome.  I have always loved to cook so it feels great being in my new kitchen. 







And then there were the unexpected bad things.  The bathtub is eventually gonna have to come out, I think.  It's way too tight for Javy's shower chair and there's something wrong with the nozzle.  We had some unexpected visitors, like the centipede that was crawling on my arm one night when I was sleeping in Javy's room.  (Thank God, it was me and not Javy).  Miraculously, I was able to fling it off of me without getting bit.  And the scorpion crawling up the living room wall, was kind of freaky.  His brother was found, later, crawling across the floor.  We gave them to our friend Ruby, so she could make art out of them so its not a totally bad.  Now that I am actively looking for more for her, I can't find any.

Now that the house is somewhat in order, I am able to work on our garden.  I just planted some beans in the back forty.  And I've got big plans to make a boardwalk around the outside of the house for Javy.   The terrain is a little uneven.  Don't make any plans in March, that's when the housewarming will be, I hope.    

Wheel tracks and footprints

Gardening in red dirt

                                                                                               

If I were a rich man.......

This past weekend, me and Javy went to Oahu to attend Camp Cool, which was given by the Assistive Technology Resource Center.  However, this blog is not about that.  That will be for another blog after our final camp day.

Instead, I want to share some hope that there are some very good people in this world.  For a mom, like me, that means everything.  So first, a little background......

Me and money have never gotten along.  It never sticks with me nor has my back.  Maybe, it's because when I have a little extra, I tend to live like an aristocrat, even if its like 5 extra bucks.  I do stupid things, like the time whenever we went to New York and I paid $100 extra dollars for crappy seats at Headwig and the Angry Inch.  Or the time I wanted to treat my brother and sister to a high class meal at the Jazz Factory.  I told them order what you like, Steak, martinis, the works.  Then when I gave my credit card to the waitress, I was shocked to hear her reply, "We don't take Chevron cards."  (That's a really good way to get out of paying for a really expensive meal, btw, wink wink)

With that said, why should my excursions to Oahu be any different.  The first time I took Javy to the doctor on Oahu, I had no clue, how the heck I was going to get Javy from the airport to The Queen's Medical Center.  I had some erroneous notion that there would be a shuttle (free, of course). I was doing good to buy the airplane tickets, so I definitely couldn't afford anything else but free.  We ended up taking a cab which cost $30 bucks and I had to charge it on a credit card.  ($30 bucks, again, to get back to the airport.)  Even the taxi driver was telling me, "This is too expensive for you, next time take the bus."  Then there was the time, that I had no clue that my bank account was overdrawn until I was inside the airport, at Starbucks, of course and my debit card was declined.  Talk about panic.  Me and Javy had to spend all day in Oahu and I hadn't even fed him breakfast.  Luckily, I saw a friend and borrowed $20 to get us through the day.  Then panicked, again, when we got home and I realized that we had no money to pay for parking.  Thankfully, another friend gave me $20.  If it was only myself, it wouldn't be no big thing, but with a Javy to take care of, too, Sheesh!

So I want to share with you, our latest excursion to Oahu.  Our trip was totally paid for: the hotel, rental car and airplane tickets, you might be asking, how in the world could I screw this one up.   Well, I just didn't think about it, that's how.  The week went by and I started thinking, we've got a trip to Oahu, I better set some money aside for food and stuff.  I had $127 in my bank accounts and $72 in cash from cleaning out all the piggy banks, I thought that was enough.

Me and Javy's wheels

So here's how it went down:  I gave $10 to the porter who helped us from the airplane seat to the rental car.  He even waited for the shuttle with me and put Javy's wheelchair on the shuttle, really nice guy.  I gave the shuttle driver $2, just because that's what you're supposed to do when people provide services for you.  The rental car company required that I give them a credit card so that they could put $100 on hold, just in case, I decided to enter the Ford Taurus in a drag race.  Even though it's all paid for, but it was like a deposit that just gets put back into your account after you return the car.  This is just in the first hour of arrival.  At this point, I was down to $60 cash and $27 in my bank account.

So me and Javy cruise on over in our new set of wheels, with leather seats, to the Ala Moana Hotel.  We're stoked, life is good.  Checking in, the guy asks for a credit card to put a $50 deposit on.  I handed him my debit card, without a care in the world.  Declined.  I guess the rental car thing was immediate.  First, I'm in panic mode, that's all I have.  Then I remember the $60 and I start to reach for it.  All of a sudden my mama bear instincts come back to me and I explain to the guy that we'll just have to sleep in the car because that was all the money that I had and it was for feeding my son and I wasn't going to give that up.  The guy still very calmly gets the manager.  I explain my situation and then I start crying and I'm all shamed so I never lifted my head up.   He, graciously, agrees to waive the deposit.  I'm so grateful, but I never lift my head up.  It's when we were walking towards our room that I notice that everyone around us seems to be cheering us on.  One gentlemen approached us and asked if everything was resolved.  I replied that we were good.  I believe that he was ready to step in to pay the deposit if they hadn't waived it.  After that, I know I should've been stressed but really I was feeling very blessed.

Me and Javy sharing a booth at the LikeLike Drive Inn

Second day, Friday, I call mom and ask her to deposit about $100 to compensate for the rest of the trip or until I get paid on Saturday. I'm still kind of walking on cloud 9 because I'm really touched that everyone had our back.  Me and Javy venture out to get some breakfast.  We end up at the LikeLike Drive Inn with pancakes, sausage, eggs, the works, basically.  After that, we go get a bottle of water.  As we're entering the store, a guy outside the, in a wheelchair, asks if I can spare some change.  Before I can use any reasoning skills, I pull out one of my precious $20's and I say, I've been blessed so now I can bless you, cause Lord knows that's the only way we can get by, so bless you my friend.

Our Mauka view

The day goes by, we pay $20 to get the car out of the parking garage, we cruise around.  Lunchtime-I wanted to find something that Javy would eat so I choose Sbarro's lasagna at the food court.  It's kind of cheap, too.  Thinking that mom had deposited some money into our account, I hand the cashier my debit card.  Declined.  I still had like $14 cash so I start ask if something can be put back.  Before I can, I see that someone has put more cash on our tray.  It's the lady behind us.  I'm just like, God Bless you! Still, it's hard to get stressed in times like this, especially when you've just had a complete stranger bless you.

Hanging at the park-Ala Moana

I hope that no one thinks I'm advocating going to Oahu without a cent in the world and letting others take care of you.  This weekend, we will go back, and it will be much better, I actually have money, I think.  Better check, lol.  But I just want to share good things, especially when it can give hope.