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....