Even Better Days

Merry Christmas everyone and we wish everyone a blessed New Year.  Nothing speaks louder than pictures so here's a video compilation of Javy's progress over the last year.  Thanks to Ruby, Aaron and KORE for the pics.  It took me a while to pick the right song.  I wanted this to be hopeful yet reflect Javy's personality.  This is Eddie Vedder's Better Days.  I think the power in his voice and the different instrumentation, does just that.  So enjoy and God bless.

Festivities and madness

I was just thinking about holidays and parties.  When I was a kid, I couldn't wait to grow up and host parties.  My aunt was the perfect hostess.  It seemed like she knew how to do everything-make the perfect cocktails, exotic dishes, her decorations were charming and elegant.  She made Martha Stewart look like an eastern bloc haus frau.  My mom's specialty was Christmas.  I remember she hosted my youth group's Christmas party one year.  It was way cool, still tops the charts in my books.

So here I am, knocking ever so gently on 40's door, with my own 9 year old about to be 10 year old and Christmas less than a month away.  Last year, I did the big birthday party at my house with all the people.  I was pooped.  It didn't seem like it was really up to my aunt's standards, I don't know, I was too stressed to really enjoy it for myself.  Javy was happy, that's all that counts.  This year, I'm thinking simple, dinner at Wrangler's while Javy gets lavished with attention.  

So that got me to thinking, duh, my aunt was probably freaking out on the inside, too.  My mom obviously has been scarred by her past successes, because she's perfectly content to be a hermit and never socialize, again.  So I should never give up on my pursuit of making others have the time of their lives.  I'm still going simple for Javy's birthday, though.

But Christmas....  I just can't control that urge to go all out, no matter how much it hurts.  And just like Clark Griswald Sr, I'm gonna need a lot of help from Jack Daniels.  

Sometimes, all it takes is some luck and a smile

First the excuses for neglecting my blog....  I could say that I've been really really busy!  We're in the process of buying a house,  I work a crazy shift at work and don't get off until 1130, home at 1230 and still have to get up at 530 to get Javy ready for school...  But whatever, I'm no busier than anyone else, really!   I think the real reason is that my iMac keyboard broke and I have to type this with Javy's Crayola keyboard.  The keys are not like a regular keyboard and it likes to add frivolous characters.  For a typing purist, this is painful, but on with the blogging.

I decided to buy a house this year, Javy needs stability.  Since we've moved to Kauai, we've moved 3 times.  Since he's only going to get bigger and heavier, I need to start thinking about having a place that is accessible for him.  So the search began around July.   I started researching assistance with housing for people with disabilities.  I came across the USDA's rural loan program and from there I got the ball rolling.  The lady from the USDA sent me a chart of banks who had successfully completed their loan process.  I picked 3 of the lenders and contacted them to get pre-approval letters for no apparent reason other than they were successful according to the USDA's chart.  This is how I met Doug Henderson at Central Pacific.  You see, I am not a bank's dream client.  My income is just above poverty level, I have no money to put down and my credit score is amusing, to say the least.  The USDA's loan program gives me a little boost and my credit score was above their minimum.  Its kind of like having big brother back you up so that banks will feel more comfortable giving you money.  But still, I think that most banks would have sent me packing because I would have required extra work.  Doug has gotten to know us and he took on the challenge.  He didn't just see us as numbers.

Meanwhile, I had found a home, I thought might be perfect for us in Kekaha.  I contacted Sleeping Giant Realty via e-mail because I don't like to talk on the phone unless I have to.  Not sure why I contacted them, except that they had a really great website.  Martie Law called me back and I felt really comfortable talking to her.  She is awesome.  She set up some appointments for usto see some homes in Kekaha.  They were all duds.  Javy even started crying in the first house, I took this as a cue to get the heck out of there.  We moved the search a little further east- I chose three houses, two of them I just knew could be the ones-in Waimea and Kalaheo.  The were old farmhouses with lots of land around them, I was sure that Javy should be a country boy.  The third was a random one in Hanapepe Heights.  I never really liked it up there because the houses seemed so close together, but why not, it was in our price range and then I could only prove my dislike for Hanapepe Heights.

Long story short, old farmhouses need a lot of work.  The house in Hanapepe Heights is awesome.  It`s level so there's no need for a ramp.   It's a nice open living area so Javy can wheel himself around and the bathroom is a good size.  I am not a rocket scientist but I think that this was a good deal.  So with Doug's careful orchestration, we've made it through the loan approval process and we're just waiting on the USDA to give us their kiss of approval.  House warming party is pending.

Righteous

"Havi has a severe case of autism and can't walk or talk but as you can see from the photo he can surf! When we catch a wave he lets out this sound that I call the primal scream which warms your heart."  Kevin Horgan

Heavy!

Today was one of those days when I felt like crying, like curling up in the fetal position and just bawling.  A wee bit dramatic, but I'm only being honest.  That is how I felt.  The day has finally arrived.  I've been trying to push it back.  I knew it was inevitable, but I wished it out of existence.  Javy finally had a growth spurt that pushed over the edge where I can't just pick him up like a sack of potatoes and carry him.  Heck, I couldn't even put him the shower tonight.

I knew he was having his growth spurt over the last couple of weeks.  He showed no interest in food and he was really restless.  That's been his pattern since he was small (haha, literally).  Then he'll get his appetite back and sleep like a baby.

The last doctor's appointment that he was weighed at, he was about 65 pounds and that was in November.  Since his last growth spurt, I think he's gained about 10 pounds.

But with the growth, also comes strength.  Javy is really strong and most of the time, I can get him to stand up and support his own weight which makes transitions easier.  But today, Javy had a floppy day.  I'm not sure why he does this every now and then.  Most times he's eager to stand up.  He may not do what he needs to do, but he'll dance and push furniture around.  Not today, he was having a hard time of it.

After eating his fish sticks, I wanted to give him a shower.  So I started stoking Javy up about playing in the water.  I managed to get him in his wheelchair to transport him to the bathroom. I pushed him up to the tub and then I tried to get him to support his weight and stand nice and tall so I could transition him into his shower chair.  I got him on his feet and he just plopped over my leg and wouldn't raise his head. Have you ever tried to carry a 75 pound of rice and give it a shower.  Pretty much impossible, it just bends in the middle and throws out your back.  This is the point where I wanted to crawl in the shower and bawl my eyes out.  I frustratingly tried to reason with Javy, explaining how he needs to help mommy because he's a strong boy until it  turned into, "Mommy can't do this anymore, pleeeeeease."  Alright, I knew it was enough talk with Javy just laughing at me so I just grunted and heaved and got him in his chair the best I could.  Got him all squeaky clean.  I tried, again, when I was getting him out.  Javy just got sad cause I wasn't having a good time.

I can no longer say as long as I can carry Javy, I will, because there will be a time when I cannot.  When I check-in with Hawaiian Airlines next week, I will have to get the aisle chair.  I can't make a mad dash off the plane, toting Javy like a sack of potatoes.

Fortunately, this isn't how the evening ended.  Javy successfully maneuvered himself onto the couch from his wheelchair and then back into it.  And I made him crawl onto his bed.  If he can crawl off, he can certainly crawl onto it.  Everybody has bad days and get under the weather and don't feel like doing much.  It's just that when Javy has those days, it's not the same.  He has to work harder for everything he does.  It's my job to teach him that he can't let up.  

How my son taught me to surf!

Awesome isn't a big enough word to describe the day we had, today.  We met up with one of Javy's surfing buddies in Hanalei, this morning.  It was a beautiful day and there were sets of those soft, fluffy waves.  I noticed that the tide was moving in on the spot were we had parked Javy's wheelchair so I ran out of the water to go move it.  When I came back, Ryan told me, "Kevin is going to let Javy go on his own."  Oh my!  Okay, I started taking big breaths, telling myself it's okay, I totally trust Kevin.  But more than that I trust God, so I started praying to myself, more or less just to calm myself.

Here comes the set.  Kevin gave Javy a big push and let him go.  We had a chain of about four adults, hopefully the wave would lead Javy to one of us or we'd move fast enough to get in his path.  Javy was oblivious to all of this, as he lay prone, supporting himself with his elbows and his head high.  He was doing his snake pose.  We watched in awe as he moved his body with the wave and he came barreling towards us, laughing.  I gave him a kiss when he came to a stop.  Relieved and happy, I turned him around and pushed him back out.

Javy caught several more sets, just like this.  Javy stayed on the board, let the wave take him where it wanted to go.  Finally, one set took him a little to far to the left and he couldn't hang on or maybe he didn't want to.  It's debatable.  He went flying into the water.  My stomach dropped and my knees became weak and wobbly.  I knew that I couldn't get there fast enough.  But Javy came up, easily with his life jacket on, and he kept his head above the water.  Kevin flew over there and got him right back up on the board.  He took him straight back out and caught the next set.  Javy was in heaven.

I want to be free like Javy.

STRESS: It either makes you or breaks you

Maybe I need to go a little bit into my background......  Please bear with me a moment, there is a point.

 I grew up thinking that I was gonna own the world.  I believed I could have it all: a career and a perfect family.  For the longest time, up to my sophomore year of high school, I was going to be a veterinarian.  But then I realized that sick animals made me too sad.  Specific career  plans, kind of fell by the way side, but I still got my Bachelor's Degree.  But it wasn't until I started working at the Wal-Mart in Guntersville, Alabama that I figured out what I wanted to be... a civil servant, lol.  That was when I met a group of policemen, who seemed like real heroes to me.  They were part of a program that President Clinton, I believe started, where the officers would just simply hang out in the higher crime areas.  You know, get to know the residents and just be a presence in their community, not just harass them when times got rough.   They encouraged me, but they were like, Doris, you have a college degree become an FBI Agent.  So that became my new career goal.  So a year out of college, I started working for the FBI as a support personnel.  Eventually, I took all the tests and failed my first interview to become an FBI Agent.  But that was okay, I had one more chance.  I was running and working with a personal trainer.  I can run fast for a big girl.  Everyone was encouraging me.

Then I got pregnant with Javy.  That still didn't deter me, remember, I believe that I can have it all.

Then on 9-11-01, that's when reality hit me.  I was five months pregnant with Javy and I was at a training at Quantico, VA.  I was so scared that day.  Outside there was beautiful, crisp blues skies.  and only 30 miles away, there was destruction.  It was surreal.  I just kept holding my belly.  Later, that night, I saw the airplane sticking out of the pentagon with smoke still coming out of it, as me and my co-workers just stared in awe.  I've never seen the National Mall that empty . Volunteers were needed to go to NYC as Employee Assistance Counselors.  I turned them down.  All I could think about was protecting my baby and getting home to my family.  That's when I knew that I could never be an FBI Agent.  I could never put in the dedication that was required to do the best I could.  My son was more important.

But I still believe that I have it all, my priorities just changed.  I'm still a public servant, as I've been working for the government for 14 years now.  I have a wonderful family that I love to take care of- Javy, my mom and occasionally my sister when she is here.  It's unconventional, but it works for me.  We live in the only place that I've ever felt at home and the only place I would have Javy grow up.

Now it's time for the next challenge in my life.  Buy my own home, one that will grow with Javy.  So I've been researching some websites to see if there is anything out there to help families by homes and adapt them for people with disabilities.  I did come up with some stuff today. http://www.hihomeownership.org: http://www.nw.org/network/neighborworksProgs/ownership/default.asp:Housing Assistance: Housing: Disability.gov If anyone else knows about something, please let me know.  

Our summer, so far

Yay, I can finally sit in a chair in front of the computer and not be in pain.  Thank you, Dr. Kaipo Pavao for helping with my pinched nerve without surgery.  I'm very relieved that I've recovered from this.  My worst nightmare was realized when I found that I was unable to care for Javy.  When it first happened, I had chronic pain for a couple of weeks before I had had any relief.  I couldn't pick Javy up.  I couldn't sleep so my patience was very, very low.  It was like a little glimpse into something I don't want to even think about-being unable to take care of my own son, because of my own health issues.  I know, Javy is going to grow bigger and I'll eventually be unable to pick him up without assistance, but having my own body limit me in what I can and can't do, is unnerving.  So in a way, it's a blessing, because I'm going to take measures to take better care of myself.  Also, I want to set up a trust fund to ensure Javy is taken care of in the future.

Javy is in summer school, it's only about a month, but he seems to be enjoying it.  I'm going to meet the teacher today.  It's the first time I've had the chance to do so, because I've been fortunate enough to have Saturday/Sunday off for the last month.  Aaron found a nice light weight wheelchair that Javy fits perfectly in.  It can go off road, too.  

Surfer Boy

Parents are always too hard on themselves

We had a great Easter weekend.  I was fortunate to be off for the entire weekend and actually got to spend four straight days with Javy.  But my body feels like it got run over by a freight train.  Friday, we went to Salt Pond and I found myself picking Javy up a lot.  Saturday, we went shopping with our friend, Aaron.  So in and out of the car, I was picking Javy up over and over.  Easter Sunday, we were invited up to Koke'e to spend Easter with the Emayo family.  It's such an electric atmosphere (think Big Fat Greek Wedding) and Javy was having such a great time.   But it meant more and more picking up Javy, maneuvering him around.  

Then on Monday, we had to go into town for a psych evaluation for Javy.  It was for the Department of Health, part of the process for getting services for Javy.  The original intake interview was back in October and the psychiatrist came all the way from Oahu just for Javy.  Honestly, I didn't know what to expect and I almost didn't come with him because I wasn't sure if I would be able to get off work.  We were in there for about an hour and what the psych evaluation consists of is an IQ test, which took less than 5 minutes and me answering a bunch of questions about Javy's capabilities.  The majority of the time was taken up by her going over Javy's history, which was right in front of her in a well written report that the original intake officer had already put together.  She even commented about how well written the report was.  This process is excruciating for me now, Javy is almost 9 years old.  Having to relive the past-all the confusion, the denial, and the lack of interest by other health professionals.

There is also all the questioning about family.  The way she phrased it was so odd.  Kind of in passing, she just said, in an assuming way, "The parents are intact."  I was confused because I said, "Yes." and nodded my head emphatically.  My initial thought when she said this was that we were still alive, like are bodies have not been blown into pieces-the parents are still intact.  But then she clarified, okay the parents are still married.  I'm like whooooaaa.  Nope, never been married.  Then she still made assumptions, okay the parents aren't married, but still together.  I had to put on the brakes, again.  Nope, never married, not together.  Oh, well, then how long has it been.  I'm like, why do I have to answer these questions, I've already been through this, it's right in front of you.  This lady gave me the heeby-jeebies!  

But she did that kind of thing throughout the interview.  "So Javy's been this way since birth, what did they call it."  I had to spend most of my time correcting her and back-tracking.  My next favorite moment was when she kept trying to diagnose Javy.  At one point, she said, "What about Rett's Syndrome?"  I'm like already been tested, it was negative.  She said well, it's not detected with genetic testing.  (One of Javy's first genetic tests was for Rett's Syndrome, I know this for a fact.)  But I chose not to argue with her and just said, okay, that's interesting.  Later, she randomly just threw out the statement, "It's funny that he hasn't been diagnosed."  In my head, I'm thinking, "Maybe that's my problem, it's a joke and I've been taking it so seriously."  But, again, I kept my cool.  I still kept my cool, when she asked me if Javy had any weak areas (on his body).  I said, "No, Javy is super strong."  She replied, "Oh, then why can't he walk?"  as if my knowledge was in question about my son's body. 

When my interrogation was over, we commenced the purpose of our visit.  She handed me a questionnaire, a DDST, I think it was.  It was basic questions concerning things that Javy could do.  And then she focused on Javy trying to get him to point at pictures on a flip chart.  This was his IQ test.  I heard her ask, "What does an elephant eat?"  I looked up and there was a grouping of pictures, one of which was a peanut.  I'm thinking, "OMG!"  I forgot to tell Javy about the peanuts.  The IQ test took literally less than 5 minutes, if that.  She informed that she didn't get much response, does Javy point at pictures at home.  Ugh, here we go again.....  No, he just listens.  (I don't read him picture books anymore).  I read him Bible stories and Dr. Seuss books.  

Even though, I truly believe the lady was out of line and unprofessional, it still makes me re-evaluate myself.  How much of it is my fault?  I never give Javy a chance to do things for himself.  And I never make him point at pictures.  I know, deep down that this lady only spent a short amount of time with my love, and could never truly know Javy and who he really is, but these situations just pull us out of our own little world and into the world's reality.  And I don't like it in there.  Here we go again....

What is communication?

It feels really wrong to say that Javy can't speak or Javy is nonverbal.  I'm just not at peace with that expression.  But when people ask me what Javy's diagnosis is, my response is generally, "Well, he's undiagnosed.  He just doesn't walk or talk."  It's the simplest way to put it, but it's not accurate.

I just don't see him that way.  As his mother, I know what he wants.  I can follow his facial expression and his eye gazes.  I can decipher his words, and I do believe that he says words.  I hear him utter "mom", "night", and I even found myself responding to some of his sounds tonight with, "I love you, too".  I truly believe that was what he was saying, because I had just gotten through singing the "I love Javy and Javy loves mommy" song.   I see him as a bright, capable, understanding boy.  I even forget sometimes that he even has issues, like when I take him for a cruise in the truck, with his baseball cap on and the windows down and he's just giggling the whole time.  But sometimes, I think that we just live in our own little world.

I kind of got a reality check whenever I went with Javy's 3rd grade class up to The Koke'e Discovery Center.  I watched how the kids looked at Javy when he was eating or drooling all over himself.  Or when he'd laugh hysterically for no apparent reason.  But the kids are so good with Javy.  They were interested in making sure that Javy got to participate in what they did and were worried about him when he took a spill in his wheelchair.  Those are going to be  his classmates for the rest of his public school career and I hope that they will get to spend enough time with him to see what I see.  Because it's fun living in Javy's world.    

Spring Break Part 2

Spring Break is officially over.  Better finish our exciting adventures.

We left off, in part 1, with the doctor's visit.  The abbreviated version goes like this:  we ate met up with good friends, had a fabulous dinner, rode out the Tsunami warning on the 24th floor of a hotel in Honolulu, flew back to Kauai the next morning and hibernated the rest of the day.   Javy went surfing w/ Mr. Ryan (I had to work) on Saturday w/ KORE (still waiting on pictures).  But I was told that Javy's favorite surf guy, got him to stand on the board twice.  On Monday, my vacation began, the first of 10 glorious days.

Basically, we vegged out.  Went to Salt Pond, twice.  On Tuesday, the current was really funky.  The ocean is a funny place, not haha funny.  But the waves can be really high, but as long as the current isn't funky, I'm cool with it.  I don't like being in the water with Javy when I can't control myself.  We went, again, on Friday.  The water was a little too chunky and brown for me, so that was a short trip, too.

We did get some fishing in.  Well, more like, a game of let's see how long I can keep the shrimp on my hook without losing it on the rocks.  I got good after awhile, and managed to keep the shrimp on my line after 4 casts.  The crabs ate well, anyways.

Here's a photo montage of all the good times:

So tomorrow we're off to Koke'e for Javy 3rd Grade Class Field Trip.  I don't have to return to work until Friday, but technically Spring 2011 is pau.  

Spring Break Part One

Soooo, it's about time for a new update and there's a lot to talk about.  But I've got writer's block.  I've been thinking about what I'm going to write all day, we've had a busy week. I waited and waited, waited until we got back from Salt Pond, waited until after we ate supper, waited until Javy went to bed.  Now, I'm here... all alone,  no distractions and nothing.  So I might as well just start typing.

First off, the week (my weeks run from off days to off days-Wednesday to Wednesday, btw) began with a barbecue at Salt Pond with friends.  Javy stayed in the pavilion and chillaxed with the ladies.  But he also had time to do some downhill slopes.

Then on Thursday, we had to take the first flight out to Oahu for Javy's Dr.'s appointment, just to refill his baclofen pump, nothing major.  We have to make this journey about every two months and we have our routine pretty well down pat.  First, we arrive at the airport.  The Hawaiian Airline's employees on the Lihue side always take care of us, they give us 4A & 4B, the two-seater side of the handicap aisle (or the Portugese first class, like I heard one man say on our last flight).  I make sure to snap all of his straps together on the wheelchair so that when they put it under the airplane none of them get broken (learned this from experience).  Since Javy isn't strapped down, I run him down the jet bridge with the wheels tilted up, park him, pick him up and carry him to the seat.  For 20 minutes, I can relax.

Once the plane lands, everybody stands but us, we have to wait for the wheelchair.  So I watch through the window.  As soon as I see it coming up the stairs, I put the backpack on and unbuckle Javy.  I look at the aisle and wait for the slightest gap.  I grab Javy and make a run for it.  The flight attendants, usually make some sort of noise at us, kind of like, "uh"and I just keep going cause I know it's out there.  Strap him in and run up the jet bridge.  Why the rush, you say?  Well, I usually change his diaper, because I know that the airport has at least one surface in the women's bathroom that I can use to change him.  Then we have to catch the bus, which is usually every half hour.   When the bus stops at King and Punchbowl. we watch as all the people try to ambush the bus to get on, while the bus drivers starts to let down the wheelchair ramp.  Depending on the weather or time, we run or stroll the two blocks to Queens hospital.

Have I lost your interest, yet.  Well, this is a blog about bringing awareness regarding people with special needs and undiagnosed disorders.  These are the things I have to think about and it's taken almost three years for me to get this routine down to a science.  The first trip we took, I didn't know about the buses and we took a cab to Queen's.  It cost $30.00.  But I think I want my greater point of all this to be that I really don't think about it, too much.  It's just how it goes, as parents we always have to think and prepare, there's just a little bit more extra planning that has to take place with Javy.

Well, we made it to the Dr.'s appointment.  Of course, the doctor was 30 minutes late.

I think I'll finish our adventures tomorrow.  It's getting late.  

Cruizin'

Wow!  So much has been going on these last couple of months, I can't believe it's already March.

Some updates on what's going on with us:

Javy had some testing done (I spoke about it in an earlier blog about the visit with the geneticist).  He had a renal and heart ultrasound, both of which, were normal.  He had his eyes and ears checked and everything seems good with his hearing and sight.  He also had some blood work done for some specific genetic tests, like fragile x and some metabolic disorders.  All his tests came back normal.   When the genetics counselor called, she explained that one of his blood tests came back high, which could indicate some other stuff that they want to test further for.  I'll give more details when they send me their report, so there's still hope of finding something before his next annual visit.

Javy still keeps improving, though.  He's pulling himself to standing more.  He's more alert and paying attention.  He knows when the bus is coming to pick him up before it gets here, because he hears it coming down the road.  And we have some good news:

My friends diligence paid off in his continuos effort to find a gait trainer for Javy.  He bid on this gait trainer, which is the exact model that Javy's school PTs had recommended for him, and got it for $726.

And my other friend, chased down a man with a double jogger stroller and asked if we could have it.  He was taking it to the thrift store, anyways.  It's in pretty good condition and with some modifications, we can make it into a cruiser for Javy so he can go off-roading and beach strolls.  I have to give credit where credit is due, though.  All of these things occurred without me having to lift a finger.  Well, I did go to the bank and withdraw the money that was in the savings account that we had been blessed with over the last few months.  Thank you to everyone who contributed and sent prayers our way.

So now we're just waiting for next week, we have a trip to Oahu planned, then it's Spring Break and then a camping trip to Koke'e.

God bless

Lucky we live........

There's an expression that I hear often, that I've come to love.  Lucky we live Hawaii.  Now, I've heard this expression mostly from weathermen, who are explaining our weather situation compared some poor city in the mainland getting pelted by snow or tornadoes.  But I love this expression just the same.  It encompasses everything that I feel.

I live in Hawaii, more specifically, Kauai, for Javy.  It's a place that I could never even dream of and it's the perfect place to raise Javy.  Some of you guys may have come to wonder why on earth we came to move here.  So I'm going to tell you.....

The first time we came here was in 2004.  My mom just had a cancerous lump removed from her breast and was about to start radiation treatments.  My sister could not come to Alabama to be with her so she sent us three tickets to paradise, for me, mom and Javy.  Hawaii, prior to that had never been a place I had thought about visiting, I was more of a cold weather, mountain girl.  But, hey, someone sends you free tickets, what could I do but go....

In fact, I almost didn't.  The night before we were to leave, I was throwing my guts up.  I was packing a little and then paying homage to the porcelain god, all through the night.  I thought there's no way I"m gonna get on a plane for 12 hours.  But when I woke up the next morning, I found that I was fine.  I decided to risk it.  So off to Kauai, we went......

And the rest is history.......

Nah, I won't end the story just, yet.  For you guys who live on the Mainland, I know, I like to torture y'all with beautiful pictures of us swimming in the ocean in the middle of December.  But that's not why I live here.  I live here for my son.  And maybe a little for my mother, lol.  But my epiphany moment, when I realized this is the absolute best place to raise my child, when it became more than just a cute fantasy, came in December 2007.  We were visiting Joy (my sister).  She was living in an apartment in Waimea.  It was a Saturday, and I took Javy for a walk around Waimea.  Saturdays, to me, have a magical feel anyways, but this Saturday was one of the crystal clear blue sky Saturdays.  So I'm be-bopping down the road, the middle of the road, because you can on the side streets in Waimea, when a group of boys came riding up on their bikes.  Javy, in his wheelchair, flashes them a smile.  I, shudder, fearing how the tough-looking local boys will react.  I don't like it when kids are mean to other kids and I didn't want to run my mouth.  But these boys, flash a big smile at Javy and wave and say, "Hi!"  At that moment,  a flush of warmth came over me and I got "chicken skin", in other words that was an awesome moment.

At this point, in the story, you might bet thinking, "What?"  But it's that warmth that drew me here.  In Alabama, it wasn't always like that.  We'd go out shopping, walking around the neighborhood, whatever....  Most of the time we'd just get stares, from kids, parents, grandmas, whoever.  That's not to say that everyone was like that, but I'd say pretty much the majority were.  So if you know Javy and you know how happy and smiley he is with everyone, then you might understand how that could break my heart.

I, also, for the first time in my life, felt at home.

So why is it so special here......

It's called aloha.....  Yes, it really does exist.
It's when random strangers help you carry your beach towels and bags when they see that your struggling to push a wheelchair across the sand.
It's when young men offer to lift your son's wheelchair in the back of the car.
It's when a kapuna at the Farmer's Market gives you free papayas to make the little one strong.
It's when people put there hands on Javy and bless him, at the mall.
It's when special songs are played for Javy on the ukulele.
It's when your friend's son runs all the way down the road to bring you Valentine's Day cookies.
It's when a stranger gives you a jar of coins because they heard through a friend of a friends that we're saving money for Javy's beach wheelchair/gait trainer.
It's when a big tough looking Hawaiian guy stops you on the street and tells you that he (Javy) is a blessing to this town and then gives you $10.00 to buy him some lunch.
It's when a group of women, most of whom haven't even met Javy, give $500 for his wheelchair/gait trainer fund.

These are just some of the things that have happened to us since we've been here and they're all pretty random.

I haven't even come close to paying homage to all the very special friends that I have made here.  The one's who make our lives complete.  It's to you that I dedicate this Valentine's Day to.  Just because I don't have that "one" special someone, it doesn't matter because my heart and Javy's heart are overflowing with your goodness.

Lucky we live Kauai, home sweet home!

Here's to our health!

I've got something on my mind.  Today, I had some tissue taken from a thyroid nodule in my neck.  I want to post this, before I find out the results.  I know it's no big deal, thyroid nodules are quite common and it will be benign.  But it's still has kind of shaken me up, because for me, just the notion of having a biopsy is kind of scary.  I've always been pretty healthy, but I'm overweight and I'm not as active as I used to be.

What has been really scary is how tired I get, even when I'm doing a little work.  I come home and I just crash after work.  I play with Javy and it's all I can do to get him to bed and crash myself.  I really don't need or like this, because Javy needs me.  I should enjoy every minute with him and all my family and friends.

So this is what's on my mind.  Why does it take a health scare to start making me think about myself?  So when the doctor calls and tells me the samples are benign, tomorrow, I'm not gonna take this for granted.  I've already started eating more soy, and fruits and vegetables.  It's time for a change.

One of the most inspirational people that I ever met is a man named Herc Levine.  Back in 1997, pre-Javy, I was lucky enough to be assigned the task of driving Herc Levine from Birmingham to a conference in Florence, Alabama because he was the guest speaker.  I was overweight back then but I was working out and running, trying to prepare to become an FBI Agent.  Herc was a physical fitness expert and the founder of the Birmingham Track Club.  At the time, I met Herc, he was 69 years old and he was planning on running a mile backwards on his upcoming 70th birthday.  The amazing thing about Herc was that he started running when he was around 40 years old.  Before that he was an overweight, stressed out mess, who had heart problems.  Then he had his first and only child and that's all it took for him to realize his life needed to change.  He started walking and didn't give up until he was running and a picture of perfect health.  It's amazing that I can still remember all these details, but I had a fun night with Herc and I'm glad his words have come back to me.  I'm gonna be like Herc, for Javy's sake.  If anyone sees or know Herc, please tell him I said, Hello.

The New Year is off to a great start!

Wow!  We've been really busy since the 2011 began.  Last week, I was off from work, but seems like we had something going on everyday.  Javy had a renal ultrasound which was ordered by the geneticist.  His kidneys and bladder looked great and there were no deformities found.  Derek Ng came over from Oahu and completely rebuilt his wheelchair and expanded it.  Javy looks small in it, but if he grows much more, we'll just have to get him a new wheelchair.  Derek says there's not anymore room for expansion.

Last Saturday, Javy went surfing for his third time.  It was really cold, but all the diehard surfers went anyways.  Javy had so much fun and he got the longest wave of the day.  I posted the link for KORE so go look at all the really great pictures taken by Bill Crane.

Javy has had really good reports from his teacher, even for the short amount of time that he has been back at school.  She says that he has been really verbal and they hear him say, Yeah, a lot.  He seems to have mastered pushing his wheelchair by himself and purposely turns himself to get what he wants.  This is such a blessing because it's hard to believe that a few months ago, he wouldn't even try.  Also, the last two nights, I've gotten him to walk to the bathroom for his shower.  All I do is hold his elbows and he just goes.  This is really amazing because he actually initiated this.

The future is looking really bright, so put on your shades.