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.

"Simplify, simplify."

I don't think this is what Thoreau meant when he said, “Our life is frittered away by detail. Simplify, simplify.”  But tonight, Javy will be sleeping back  in his own room, again, and I will feel relatively sure that there will be no place that any bugs can hide.  And he has a brand new ceiling fan that he loves.  For the last week or so I have done my fair share of home improvement projects.  I was a carpenter, an electrician, a painter and even a plumber.  As I laid under the sink for about two hours trying to reach all the pipes and things to disconnect the old sink while all my core muscles were engaged and tight.  Or while I was doing power squats around Javy's room pulling out old trim and touching up the paint.  Or even while I had both hand in the air trying to tighten little tiny screws  for the covers that hold all the electric wires that make the ceiling fan work, I wondered one thing.  How in the world are there fat contractors?  But tonight I think I solved that mystery.  I have never wanted a cold beer more than I do, right now.  Maybe later, when Javy is safe and sound in his room.  

Back to the drawing board...

Javy's geneticist called today to give me the results from his last round of testing.  The test results that I mentioned in "The Big Doctors Appointment", here's a link if you're interested: http://adventuresinjavyland.blogspot.com/2013/05/the-big-doctors-appointment.html

So all the tests came back normal.  At first, I would've made a flat tire sound here.  When I got the message, I have to admit, I was a little disappointed.  I really thought we were heading somewhere.  But after talking to the doctor, I realized it was really a blessing.  What the doc thought he had iscalled Lesch Nyhan disease.  Its trademark symptom is self mutilation to the point of biting their tongues off and pulling out their eye lids.  People with this disease have to be bound sometimes to keep from hurting themselves.  The doctor said that the uric acid builds up and the toxins in their system cause them to regress.  

I guess, this is when parents with undiagnosed children walk the tight rope.  I was hopeful that I would be able to put a label on Javy and tell people my son has such and such syndrome.  Even become an advocate for that syndrome.  But it wasn't meant to be for us, just yet.  Bottom line is, it doesn't change anything.  We still just got to treat the symptoms and remember not to underestimate him because this boy surprises us everyday.  We got to appreciate everyday that we're given and not taken anything for granted.  To quote my wise mother when I told her the news today, "Good!  We didn't like that one, anyway!"

Yikes! A Bug!

A few nights ago, I noticed that there were a couple of bugs in Javy's bed, right before I was about to put him in it to go to sleep.  Needless to say, he didn't sleep in his bed that night.  He hasn't slept in his bed since that night, because the photos above are of his room.  I'm not sure if its an indication that I have some sort of compulsive disorder or what, but...yeah, anyway.  I had put a rubber flooring in his room because its soft.  Little did I know that would provide the perfect sanctuary for bugs.  It looked like the movie, "Bug Life" under there.  Ants had a super highway around the perimeter of the room and those little water bugs that seem to come from nowhere, were coming in through the crack in the cement.  I removed all the flooring and started prepping it to paint.  Frankly, I think that Javy's room needs to be simple with simple lines, I don't want anything that bugs can hide under.  So I started out just trying to prep to paint the floor then I figured I better take up the trim then seal under the trim.  And since I'm doing all that, I'm going to organize the closet, paint the ceiling and the trim, install a new ceiling fan and maybe remove the trim around the doorway to make it wider for his wheelchair.  Might as well.  I'm not one to freak out about bugs, I only shriek at cane spider because they always do sneak attacks.  But Javy can't swat away bugs. Wouldn't anyone do the same for their child?  I don't really have a compulsive disorder, just a love of demolition.  

Three Little Words

 Javy can say "I love you."  I'm not just imagining this.  I have witnesses-Mom, Aaron, Ryan, Ruby and Hi'ilei, all heard it, too.  But I've been trying to capture it on video.  As most people with children know, this can be a daunting task.