Sunday Morning Coming Down!

I'm just going to be honest!  I just don't like Sundays.  Seems like I always wake up with Johnny Cash singing in my head, "Cause there's something in a Sunday, Makes a body feel alone."  Now Sunday and Monday are my day off, and I'm working nights, at least for the next couple of weeks.  Its the only full day I get to spend with Javy.  I try to put that feeling aside.  Even if we're having the best day ever, surfing and spending great quality time together, at some point, I'll think about it.  Damn, its Sunday.  

I guess, it goes back to childhood.  The forced getting up and getting dressed for church.  The forced picture by the China Berry tree with our dad, all dressed up in our Sunday best, like one big happy family.  Having to sit still for what seemed like an eternity while Brother Morris went on and on, and listening to my grandma hum, loudly, while she played the closing hymn on the piano.  (Wait that's a good memory).  Everyone seemed so somber in my little kid mind.  Plus, all the stores were closed on Sunday and the streets were so empty.  Then you don't get to have any fun, because you've got get ready for the rest of the week.  

Now Saturday, that's my day!  I love Saturdays, the whole feeling of the day, no matter what, even if I'm at work.  Saturdays last forever.  I'm so excited for the day to begin, I get up early and stay up as late as possible.  When I was a kid, my mom got me up before she had to go to work.  I would watch cartoons, until my dad got up and made me breakfast.  In fact, seems like Saturdays were the only good times I had with my dad.  He made the perfect crispy fried eggs and he loved to watch Looney Tunes with me.  Then I'd spend the rest of the morning playing Mighty Mouse, in the Pecan tree, while my dad washed the cars and mowed the yard.  Then mom would take us to the beach when she got home from work.  On Saturday nights, we had the best dinners, Pancakes or pimento cheese sandwiches.  Sometimes, we'd even have sandwiches with lettuce, tomatoes and pickles.  Yeah, I'm really easy to please.      

It just shows how memories from childhood can still be pretty powerful, even when you're 39.  But I think I'm ready to move on.  I used to embrace the melancholiness, it was just a part of life.  I realize its not healthy to let those little things from the past affect me and there's new good things that I can embrace.  Now there is Sunday morning pancakes with Javy, and surfing and Salt Pond.  And having steak for dinner.  Actually, there are good memories to fall back on, too, it's just those little negatives that stand out the most.  There were roast beef and mashed potato lunches while we watched the Cowboy's play.  Then I played football with my brother and cousin, well, they practiced tackling me. 

Life has to have pleasure and pain.  It's how you respond to it that makes your character.    

Talk is cheap...

Talk is cheap, but sometimes its priceless and sometimes it doesn't require words.  The following are two conversations:

The first one is a convo with a co-worker last night, after work, about my 16 years of federal service.

CW: Where did you move from?
Me: Alabama
CW: Who did you work for?
To protect my privacy, I'm not going to reveal my answers.  I think you can follow the rest of the conversation with his questions.
CW: What and you moved here, to work here?  You had to be making pretty good money!
CW:  What?  You crackhead, why would you move here?
Me:  Hold on, let me show you something.

Me:  You can't do that Sh&* in Alabama!  (Sorry, my Alabama peeps, but its true.)
Silence
Me:  Better quality of life for my son, that is all!

Second Convo between me and Javy, this morning.

Javy's eating breakfast and I say, "Javy what you want to do today!" So I pull out the iPad and give him two choices.

Javy carefully considering his choices before breakfast.

You can't really see from the pic, but his choices are swimming and toys.  Javy continues to eat his breakfast but he's obviously looking at each picture.  During a break between bites, I bring it up, again.

Me:  Okay, you ready to make a decision.  Swimming or play with toys.  

Javy choosing Swimming

Me: Swimming!  Yay, I'm glad you chose swimming, because that's what I want to do, too.  

So another beautiful Saturday morning was spent at Salt Pond.  And we weren't the only ones enjoying a swim.  We had to share our spot with a Monk Seal.

You can barely see us, almost to the open water.  The monk seal was right behind us.

See the dark spot to the left of us, that's the monk seal

A Challenge to Myself

I really suck at blogging.  I started this blog to share the experience of raising an undiagnosed child with special needs.  My hope is to inspire and to learn.  But believe it or not, my friends, I really don't like blogging.  I'm not the kind to share things that are so personal.  Many times, things have happened and I thought I should blog about that.  I'll let it stew in my mind, go to work and do other things, and the moment, well, it just passes.  The things never get written because I talk myself out of it.  I tell myself who would even care about that.  Or I don't have a cute anecdote to back it up.   Or I'll over think it and write something dry and institutional.  Or worse, something will happen and I'm like well, I blogged yesterday, I don't want to bore people.  I'm challenging myself to blog about something everyday, no matter how trivial my mind tells me it is, there will be something on this blog for thirty days ( a good round number).

This is my first blog, in this series.  Because I'm sharing with you, how hard it is for me to share.  There are so many great blogs that I like to read, myself.  "Rants from Mommyland", "I am not the Babysitter" and "Herding Cats" are some great examples.  And they're not necessarily about children with special needs.  I think that good parenting as whole needs to be discussed.  This challenge for me is made even harder with all of the things that have gone on this week, my mind is telling me how irrelevant this is.  Even if no one reads it, I need it so that makes it relevant.

This blog started out as a voice for kids with undiagnosed disorders.  But its turned into something else, the way Javy has inspired me to do more with my life and be the whole person that I can be.  This includes includes my weight loss and physical accomplishments.  But I've kept my internal transformation very private.  People have asked me about my weight loss and how I've done it.  They're disappointed when I can't give them a definitive answer.  All I can say is that something clicked on inside me to keep me driven.  My number one inspiration was Javy.  His physical limitations never bring his spirit down.  He still tries to do everything that he can so why shouldn't I.  It's disrespectful to him to not give it my all.

I hope that people I come in contact with notice the positive changes in me.  People who know me, know that I have been very moody in the past and slightly sensitive.  (I can hear my sister snickering)  But I've come to realize that this is very selfish, my attitude can ruin someone's whole day, especially Javy's.  It takes discipline but I put away the negative thoughts and focus on the positive.  My attitude used to be, oh this is how I am, just get over it.  Life is short, I want to have the best experiences possible and I don't want Javy or anyone else to have one negative day, because of me.  It's so much easier just to smile and say nothing than to say that the first negative words that pop in your mouth.

This hit me hard the other day whenever I was sick.  I didn't want to get Javy sick, because he's having a medical procedure next week.   I isolated myself in my room and tried not to come around him.  Do you know how hard it is not to kiss and hug on him.  He's completely adorable.  I was so grumpy and I lashed out at my mom about something stupid.  I came out of my room to say goodbye and I love you to Javy before he left for school.  He looked so unhappy, he wouldn't even smile.  That negativity was just floating heavy in the air.  I was crushed and I will never forget this lesson, just the thought of Javy one bad day tears me apart.  His physical challenges are enough, he doesn't need any emotional ones.

So bear with me as I go through my challenge.  Feedback is always welcome, too.  Thanks for your support.  

Pub Run in Boston for those who want to keep on running!

Just wanted to pass this on.  There's going to be a pub run in Boston tomorrow, April 19th.  Found this on my friend's Facebook, but here's a link to the Facebook Event  https://www.facebook.com/events/584358828255578/  I wish I could go so if you're in the Boston area go run it for me and Javy.

Aloha

Gotta Keep On Running

We just gotta keep running, that is all.  Now people are terrorizing one of our most beloved events, the Boston Marathon!  This is the ultimate running event.  People, regular people who work forty hour weeks, spend hours of preparation time to train for marathons.  Most are not paid athletes, they are just people with a dream, who do it for the pure high that only comes from running.  I have dreamed of running the Kauai Marathon.  From what I've read, it will take about three years to train for it, properly.  My family will have to make sacrifices.  They will support me, give me encouragement.  They may even show up at the finish line.  No, there's no may, Javy will be at the finish line.  So I can only imagine those last seconds as the runners came down the stretch toward the finish line, their families waiting and cheering.  They had just run 26 miles and then......

I've been dealing with terrorist for the past 16 years.  My first personal bout with a terrorist was Eric Rudolph.  He bombed the abortion clinic in Birmingham in 1998.  I was annoyed because the radio stations weren't playing music as I drove to work.  They were talking about an incident near UAB, a possible explosion.  As I drove over Red Mountain, I could see some smoke over in that area.  Little did I know that it would completely turn my naive little world around.  People would actually call our tip hotline and say things like they were glad that the police officer got killed.  One guy even said that he wished "we" had gotten blown up.  I would work 16 hour shifts, only to go home and have nightmares about it.

I do know is that life has to go on.  On September 11, 2001, I was at a seminar in Quantico, Virginia.  It was a beautiful, crisp, blue sky, kind of a day.  Sometime that morning, someone interrupted our seminar and we turned the televisions on and watched with horror.  I was terrified, about five months pregnant, I don't think I've ever been so scared and I was hundreds of miles away from my family.  Later, that afternoon, a supervisor who had a car drove us off of the base and we drove around the beltway, saw the tail of the plane sticking out of the Pentagon with smoke billowing out of it.  It was very surreal, as the bustling capital was completely silent.  We drove down to the National Mall, the National Guard trucks were everywhere.  But there was one thing that I found extremely comforting and the thought still comforts me.  There was a runner, running around the Mall, like nothing had ever happened.  A runner has got to run.  

I am Javy!

In one of my earlier posts, "The magical iPad!", I related how I hoped the ipad would be a tool to help tell Javy's story.  Today, I want to share with you, a story that me and Javy put together with an app called Pictello.  You'll have to come visit us to get the full effect of the app and actually have Javy tell you the story.  But I am able to export it to a PDF file and you can view the pictures and the words. We did not write the words,  however, a dear friend wrote the words for us.  I think they embody who Javy is and his capabilities.  Thank you, Kevin!  Hopefully, this story will inspire.  I know it inspires me, when I see the picture of Javy in the middle of the ocean, doing something that I would absolutely be terrified to do.  All I can do is be proud and awestruck.  In fact, it melts away any worries or fears that I have, they seem really small when I look at Javy's story.

I Can Surf!

I Can Smile!

I Can Be Different!

I Can Live!

I Can Love!

I Can Be Javy!

Where the boy is.....

This week was Javy's Spring Break.  I'm still lame so we had to be kind of creative with new things to do.  We played with his iPad, we danced to Pandora, did yard work, mostly playing with the hose and his grandma bought him a new toy.

I'm not sure what it's called but he loves it.  The only problem is that it rubbed the skin on his feet raw, even with socks on.  Its a great way to get him on the floor without having to worry about getting him back up.

One blessing that has come out of me not being able to just pick him up, is that we've been able to transition him without picking him up.  It takes some patience, but he will bear his weight and stand up when we need him to.  We only lost him a couple of times to the floor when he decided to let his knees give.  It's tough but I just leave him there, until he decides to get up on his knees and try, again.  Tonight, I got him into his big wheelchair, alone, without picking him up.  My plan is that we will no longer pick him up, even after the doctor releases me from any weight restrictions and I can pick him up.

One of my greatest personal fears is that people will underestimate him.  I didn't realize how potent this fear was, until I was talking to his doctor at his 11 year old check-up.  I asked the doctor if there was any way to test his brain and its understanding.  IQ tests are insufficient and I don't think any value should be placed on them.  He's going to start middle school next year and I don't want to make the same mistakes that I've made in the past when I expected other people to just discover on their own what he is actually able to do.  So the wise Dr. Raelson asked me if I had ever considered getting him a power wheelchair and I'm like, okay, this is off topic.  But I told him no, he couldn't do a power wheelchair with it's little controller.  His hands are too spastic.  Besides he can push his wheelchair, just fine.  Dr. Raelson got all contemplative and said so you're tell me, he'll push his wheelchair, deliberately, from Point A to Point B.   Yeah, if he wants something.  Then why can't he utilize a power chair and if he can use a power chair then he can expand his world to all the technology that comes with a power chair.  Then he'll have more capabilities to show that he can understand.  Oh crap, I was underestimating Javy.  That conversation kind of gave me a jolt.  The iPad is great for giving him an outlet and I've stared looking at it as a way to open up his thinking that communication is the way to express to himself.   But if he can pick up one small piece of Kix cereal off the table, which I've seen him do, then he can do more with his fine motor skills.

Javy's week ended on a most excellent high note.  He got to go surf with his buddy, Kevin.  The weather had been pretty crappy but it cleared up long enough for us to enjoy the north shore.  I don't Kevin will mind if I tell this story, but I probably can't tell it as well as he did.  The turtles, who normally scatter when the surfers come, did not scatter when Javy came.  They just poked their heads out of the water to get a good look at him. Javy is very peaceful and they saw no threat in Javy.  To quote Kevin, "He is one special boy." This time, Kevin was along for the ride.

Javy and Kevin