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