Sweet Amor!

First a quick update on my journey down the gluten free path!  I got glutened Sunday night, somehow.  Scary thing is that I'm not 100% sure how it happened.  It was either, cross contamination because I was cooking Javy's weekly pancake ration while I made my own dinner.  Or I ate some lunch meat and even though it said gluten free, it probably wasn't.  But it sucks.  I really have no motivation to do much and I'm cranky as  hell.  I'm just being honest.  I know, I am positively addicted to positivity, but I really can't sugar coat this.  I'm just putting a smile on my face and going about my business, but there's just no umph behind it.  Pretty much, all you can do is just wait for it to pass.  Last time it was three or four days before the headache went away.  All of this really makes me wonder.  How come I've been eating gluten all of my life and I was able to function pretty well?  I mean, there were issues.  That's what lead us down this path, but it wasn't a show stopper.  Life had to go on.  Now all of a sudden, I cleanse my body and one smidgen of gluten gets around me and its like all hell breaks loose.  Is it because we get so used to feeling miserable and deficient that we don't even know we are?

The other thing is that I've gained some weight.  I've kind of got this figured out and I'm trying to get back on the right track.  I have a limited diet and we're not the richest folks so we can't just up and restock the fridge.  Mom and Javy are eating the gluten stuff (hence, the pancakes).  I'm eating everything else.  It's like being in scavenger mode.  At first, I didn't feel like I was eating that much, but I think that the non gluten stuff actually has more calories.  For example, the picture below was my lunch one day.  It looks really healthy, right?  But its over 500 calories worth of food.  The humus, peanut butter and rice crackers are all high calorie and probably shouldn't be eaten together.  So I'll figure it out.  Its just hard right now with my lack of motivation.  But I think I just have to budget my calories with my new diet.  I'm back to using MyFitnessPal, religiously.

I don't like to leave things on a downer.  You maybe wondering about the title..  I said not much was making me happy right now, but I want to share with you one thing that is.  This is a picture I tried to capture of Javy seriously macking on a girl at KORE, an older surfer girl, of course.  You can see that he's looking down, because she was sitting on a towel in the sand, eating her lunch.  His attention went immediately to her.  But she would have none of it and refused to acknowledge  him.  It was so cute.  His attention could not be diverted until she finally got tired of it and walked away.  Ahhhh, young love.  

No More Drama for this Mama!

I know, in the past, I've described how our life in Javyland is like a roller coaster.  Things will be smooth and good things will be happening and then BAM!  Something happens, like a seizure or we run into a healthcare provider who isn't up to our standards.  At first, this was all very daunting and quite frankly, made me exhausted-the constant jerking and pulling of emotions.  But I just realized something, and this something is probably what all of my wise sensei's have been trying to teach me all along.  I am in control of the roller coaster, I've got my hand on the lever.  I can't change the circumstances or situations that come up, but I can change my reaction to them.

So my goal for my forties is to have better control of my emotions.  I'll give you an example, Javy's first physical therapist really pissed me off.  She made me feel stupid and like I was in the way.  But I will never forget the day, Javy was about a year old and she strapped him to a stander with wheels and expected him to push himself with his hands, in the middle of this big room full of kids at his daycare.  Javy started screaming and I went to take him off of the contraption.  She started yelling at me to leave him alone, how can expect him to do anything by himself, blah blah blah!  So the claws came out.  And I got Javy off the contraption and that lady never came close to him again.  Needless to say it was very dramatic and I'm sure my family and friends got an ear full for weeks about this lady.  It seemed like there was always stuff like that going on.

I call it the "Mama Bear Syndrome".  It's a natural thing.  We see our babies in discomfort and we're going to swoop in and save them.  It doesn't matter what the intentions are of the person, they may be well meaning but we're not going to take the time to ask.  I dare you to try and explain why you're getting close to a Grizzly baby, to its mama!  This is a natural phenomena that I believe is totally meant to be, it's how we survive.  I was joking with my mama yesterday that birthdays are really for mothers.  I mean all I did was live for forty years-that means that I breathed, kept myself hydrated and nourished.  Easy!  Mom not only kept herself alive, but also three other humans.  And then taught them how to keep themselves alive.  It's hard work!


So when stuff comes up, I'm not going to take the bait.  I'm going to control my reactions and just take whatever steps are necessary to resolve the situations.  Action over reaction!

God bless!

Privates!

As if we didn't already know this, but despite Javy's disabilities, he is a normal child.  I just want to share more evidence of his ability to understand what's going on around him.

Today was Javy's first official day as a middle schooler.  I went to the school about mid-morning just to see how things were going, answer any questions and that sort of thing.  I was helping Javy's aide change his diaper and I was telling her about my ninja diaper changing abilities.  (I can change his diaper in his wheelchair, which makes it easy when we're traveling and there's not changing tables.)  Anyway, we're talking about this kind of stuff and I look down at Javy.  He's looking straight at me and giving me the meanest look.  When I look at him, he lets out this blood curdling squeal.  It kind of shocked us a second then it dawned on me.  The kind of stuff I was talking about would embarrass any 11 year old to have their mom's talking about to other people.  So I just apologized to him. I'm sorry Javy.  I won't tell her your personal business anymore.  And he just smiled.  I'll take this kind of affirmation over any dumb IQ test, anytime.  

Sometimes knowing you're intolerant is a good thing!

***WARNING**CUIDADO**ACHTUNG**警告

This blog contains heart wrenching admissions that will either make you laugh out loud, snort, or cry; depending on your state of mind or how well you know the author of this blog.  Read at your own risk!!!!

    I am not perfect!  I have issues.  All my life, since small kid time, I have been overly sensitive and hyper-emotional.  Thing is, its never been a problem, or at least I never thought it was a problem.  Its just the way I am, my personality.  I've had a successful career, raised a child (I'm assuming you all know who I am talking about, he's the whole purpose of this blog.)  I even have friends.  Thing is, I've never changed, I've just learned to cope.  I cope by planning and organizing and bottling up my emotions which makes me extremely inflexible.  But I still never thought about it being an issue, just thought that was the way it is.  My family always likes to tell me that I'm overly sensitive and I need to calm down.  My response was, well, you know that's how I am.  Why not be nicer to me?  

     I'm trying to make light of the issue, but truth is its a hard thing to air my dirty laundry for the world to see, but its worth it, if it helps somebody else.  So please don't use this against me, because I am oversensitive and you don't want to make Javy's Mama cry.

     So we've had a pretty busy summer.  The Bama Family came to visity-my brother and his three kids.  Javy loved spending time with his cousins.  

Cousins!

     I stood up on a standup paddle board by myself in the ocean, with Javy on the front!  He pretty much yawned about it the whole time and humored me.  He is a big wave surfer, you know.  But it was pretty special for me.  

     And amongst all this hustle and bustle, I've learned that I'm gluten intolerant.  Again, I've never thought that there was anything wrong with me.  Over the last year and a half, I've lost 89 pounds.  I lift weights, I run, swim, hike, whatever activity presents itself to me, I do it.  But one day, I came home from work and I had this conversation with my mom that went something like this:

Mom: "Did you read that post (Facebook) that Marie put up?"  (Facebook, the new WebMD)

Me:  "What?  The one about 'Signs of Gluten Intolerance."  Yeah."

Mom:  "Yeah, you've got about 7 of those."

Me:  "Nah, I counted 4."  

Mom:  (Shaking her head) "Read them, again."

Me: "Okay, 1,2....3,4....okay, 5...yeah, 6......alright 7.  Damnit."  

Mom:  "I never wanted to say anything because it might piss you off, but you have no stamina.  Especially for someone about to turn 40."

Me: "Well, I do love naps."

Here's the link to the article we were talking about.

http://www.mindbodygreen.com/0-7482/10-signs-youre-gluten-intolerant.html

So the next day, I went off gluten, or I thought I did until I discovered that the corn tortilla chips I was eating had wheat in them.  So a couple of days later, I went off gluten.  I made it another week and half.  I won't bore you with the gory details.  But I will tell you that the difference for me being off gluten, well, its like the difference between a foggy day in London and a gorgeous, crisp blue sky with perfect white puffy clouds at Polihale.  My goal is to stay in Polihale.  

Polihale, Kauai

It's amazing to me, here I am, turning the big 4-0 next week and I'm still finding out ways to make life better.  Its always been my personal philosophy that we should always be striving to learn and do better.  Sometimes I get frustrated and I cry out to God, why do I always have to be the one screwing up and having to apologize.  And then I hear the Holy Trinity giggling amongst themselves.  And I say, that's okay, I'll get 'em next time.  Better to know when I've done wrong than to keep making the same dumb mistakes.  Then we all have a good laugh together.  

So forget all the past posts about baking, I'm going to put that off for awhile.  Actually, I'm going to have a potluck this Wednesday, and bake some cakes to get some of the wheat out of the house.  But after that I'm going to put away my baking hat for awhile.  Hopefully, I'll be sharing some of the things I've learned.  I've already got some tips.  If you're trying to lose weight, you still have to watch your calories.  Just because it says gluten free, that doesn't mean you should eat the whole bag.  

Oh, and if you find an alternative gluten free adult beverage (I like to call it that, because its more fun to say when you're drunk), you shouldn't drink all those either.  They have more calories.  Basically, I'm not buying into the whole gluten free biz.  The best diet is still whole foods-lean proteins, fruits and veggies.  

One last thing.....

  

KORE II

On tonight's episode of "Shout Out Sunday", I would like to give a big SHOUT OUT to the people of KORE.  It's coming up on their fourth anniversary and Javy has been participating with them for almost 3 of those years.  It's still an amazing experience every time.  It has grown so much and that only shows me that it was totally meant to be.  There are people from every walk of life who participate and volunteer.  From teachers, security officers (ahem), international traders, firemen, therapists, doctors and maybe even four out of five dentists would agree, it doesn't matter because what people do to make money, it just doesn't really matter there.  Its all about the ride.

And its not only kids like Javy.  This past Saturday, while me and Javy were waiting for our turn to surf, this older lady was waiting under the tent with us.  She bluntly stated, "I died and they brought me back.  Now I'm on my way back up."  I was awestruck for a moment, but I managed to say, "That's awesome!  Now you're coming back 100%."  She said, "You know it, sister."  Once she got out on the board, they couldn't get her out of the water.

I've had this theory about kids like Javy who have never walked.  I found out that this lady is a great athlete.  She has this spark that is going to keep driving her until she reaches her goal.  But Javy has never walked, he's never felt the freedom of running madly around a playground.  So how do you inspire the spark that could motivate him to walk.  I believe that KORE does just that.

I remember the first time Javy got on a surfboard.  I was so freaking nervous.  Up until then, Javy's experience in the ocean was the keiki pond at Salt Pond.  Our swimming apparatus was Mr. Zebra, a half ring.  I would stand there and hold the back of Mr. Zebra together while Javy splashed around.  I hadn't even swam in the ocean myself.  I'm not talking playing in the breaks, I'm talking fully immersed in the deep blue sea.  It took me about three months from the time that I had first heard about KORE to get him there.  I could not even fathom putting him on a surfboard in Hanalei Bay.  But the smile on his face that day, I knew there was no turning back.  And now he's a big wave surfer.

Javy's first time surfing!

I would just like to encourage everyone to support organizations like this.  They're all over the country.  In Miami, there's Shake A Leg Miami, where they do adaptive surfing.  In Texas, there's the Horse Boy Foundation.  Special Olympics and the Miracle League, also create an environment for all abilities and they're all over the country.  And by God, go and find your own passions and dreams, too.

You can find more information about KORE at korekauai.com

Scrubs need not apply!

So what's unique about my blog, I think, is that I'm a single mom. There's plenty of single parents out there who are doing awesome jobs, but I only know a few single parents raising kids with disabilities.  I've never been married and Javy's dad hasn't seen him since he was about a year and half.  I think that everything worked out the way it was supposed to happen.

But I think that my blog provides a unique perspective from a single person going along for the ride, who is still young at heart.  I feel like I've gotten to be a little bit wiser, I'm still making mistakes but I always learn and pick myself back up.  One important lesson that I've learned is that Javy weeds out the  bad eggs.  Well, maybe that's too harsh, they're not necessarily bad eggs.  Maybe just the ones that aren't meant for us.

I've had a few boyfriends since Javy was born.  The way I approached it was that I just didn't talk about Javy, at first.  My logic was that I didn't want a stranger being involved in Javy's life until I had a chance to scope them out.  I thought I was saving myself the trouble of having Javy get attached to someone and then it not working out and then having a bunch of drama.  That method really didn't work, too well.

Now I'm just blunt about it.  As soon as I feel like someone is getting the slightest bit interested, I just bluntly state, "My son is in a wheelchair," and watch them back track.  I haven't dated in a couple of years, but I feel like that this method must be working and has saved me a lot of heartache.  Case in point, the other night I was purchasing a big ticket item at one of those box home improvement stores.  The sales associate seemed to be getting a little bit flirty and interested.  He must've been nuts because he told me that he liked my sense of humor.  Now I may be wrong about all this, but it seemed like I was getting a lot of personal information, as well as he trying to get a lot of personal information about me.  I was praying to myself, "Please don't ask me out, please don't ask me out!"  Don't get me wrong, he was nice enough.  I've just got too much on my plate to think about bringing in new people into my life, unless they come in easily and willingly.  So I bluntly added to the conversation, "My son is in a wheelchair."  Screech went his brakes and that was the end of that.  Shoo!

And don't think just because I've lost all this weight, I'm getting more attention.  I think I actually got asked out more when I was big.  But it maybe because when someone tries to get close, I stiffen up and pray to myself, "Please don't ask me out!  Please don't ask me out!"  I figure if they make it past all those tests, then it might be worth my time and Javy's time.

I'm just happy with my life overall now and have never been more sure of myself.  I love the people who are in my life and feel like I've been extremely blessed with positive people who want to include Javy and love him just as much as I do.  Another wise friend, pointed me in the direction of how to attract positive people into my life.  If you become the person you want to be then the people who should be in your life will naturally be attracted to you.  

"Let me just whip something up..." She said!

I know, I know, enough of the blogs about our reno projects.  But I gotta give a shout out to my mom.  Today, she built a bed for Javy, pretty much out of thin air.  Not really, but really.  You see, yesterday, after my last blog, we discovered one little problem.  Javy's new lift didn't fit under the metal frame I was using for his mattress.  Oh yes, we got a new lift for Javy.  Javy finally became too big for my mom to lift so it was an absolute necessity.  Thanks to Javy's awesome medical posse-Sue and Doc Raelson, we got one, actually, pretty quickly.

Javy all snug in his bed

Back to the bed.  Since Javy is in school now, mom has to have the lift to get him ready in the morning.    We had no choice but to spend our 4th building Javy a new bed.  I did all the sawing and hammering stuff, but the design is hers.  She just told me what to do.  She made it out of a refurbished wooden box spring and some wooden slats that she got from the Habitat Restore.  If you haven't been to a Habitat Restore then you haven't lived.  We're pretty much the queens of the Restore.  It wouldn't win any design contests but I love its rustic, simple look.

I think this style is early Walden Pond. 

Now the lift fits perfectly under the bed.  

Its all fun and games for Javy.