I am now the proud owner of javysmama.com! So I will be moving Adventures in Javyland and all future blogs will be posted there. I hope you decide to move with us. I am hoping to make an awesome website and a network of support for all caretakers. Please join us over there.
Saturday, February 14, 2015
Friday, July 11, 2014
Freedom!!!!! Talkin bout Freedom!!!!
You guys rock, I'm just saying, so I want to share this with you. I belong to this group, The Single Dad Laughing Health Club. It's a Facebook page, but every week there's new challenges. I posted this picture as part of one of the weekly challenges, sharing the inspiration behind our goal for becoming healthier.
And this is what I wrote about that picture.
"My inspiration comes absolutely from my son. About four years ago, I took my son to this event called KORE-Kauai Oceanic Recreation Experience. I had read about it in the paper, and I had three different people (two of which were complete strangers) tell me about it. It took me 3 months after, the first time I heard about it, to finally get up the courage to get my son there. Basically, KORE is group of avid water people-surfers, lifeguards, firemen, etc. who get all people into the water, no matter their ability.
Well, the rest is history. The first time Javy was on a surfboard, he had to be held on. But as you can see from the picture, he loved it. He had found his passion at 9 years old, imagine that. So as time went on, a good friend now, loved to surf with Javy. He said that every time he surfed with Javy, it was like his first time surfing. Javy gave a primordial scream, when they were out there. My friend kept taking Javy further and further. Now he surfs out in "the bowl" where the big wave surfers go. That's the picture on the bottom.
I remember one session, before Javy went out into the big waves, our friend decided to just push Javy alone on the surfboard. I was nervous, but I trusted that everything would be alright. That first time, as Javy went past each person, completely free, riding his own wave; I had tears in my eyes. I said to myself, I want to be free like Javy. Ever since then, I've let Javy teach me how to surf. And that's why and how, the transformation is taking place. And its continuing. If I make a mistake, I dust off and keep on going, because I know that laziness and binge eating are not my lifestyle anymore."
The real story behind these pictures is that Javy always knew he was free. Even his first time trying something, he didn't care. He showed no trepidation, he just went for it. The person, in the upper left hand corner, didn't know that she already was free. That's the real transformation-finding out that the ability to do what I want to do, is inside me. I made all the choices that got me to 263 pounds, I own those. And I own all the choices that got me to 175. But its so much more than weight loss. I finally have a balanced life, that I truly love. And that, my friends, is freedom.
If you're not happy where you're at in life, just watch Javy grow. He is truly inspirational.
Monday, May 5, 2014
Our Morning Ceremony
Ceremony? Some people would use ritual, but I prefer ceremony. It makes life more festive! We have a morning ceremony, as well as a bedtime ceremony. These ceremonies have evolved over the years to meet Javy's individuals needs, but I think they're important to have because he needs to have the time to process his daily living activities and what his role should be. So we've evolved from him sitting in his grandma's chair and having her spoon feed him to sitting up in his chair and him feeding himself, or at least putting the spoon in his mouth.
One part of the morning ceremony that I have come to appreciate is what I call, "Time to talk to the grandma"! This is the last part before he gets on the bus. Grandma can get him to mimic her and she is basically stimulating his mind before he's off to school. Here's a quick video of this part of the ceremony. Remember, it may not be words, but sometimes the ability to joke and interact is just important.
Thursday, April 24, 2014
Positively Positive!
I gotta be honest, I've been a real stinker here, lately.
I've always tried to make this blog positive. I want it to be about awareness of what it's like raising a kid who needs some extra help. I want it to be inspirational. I hope that I've never given the impression that our life is perfect, because that isn't what I was trying to do. I usually ride through the problems and then post about how everything came out and what lessons were learned. I don't blog in the moment, because then it would be hyper-emotional. I was raised that you don't whine about your problems. It's okay to talk about problems, but you have to come to the table with solutions, too. So that is why I write the way I do.
But I also like things to be real. I regard sincerity very highly so I hope I haven't put off any vibes that we lead this life of grandeur. I get frustrated. I yell at the dog, especially now that we have three and they all come when you call one. I get down on myself. But it's usually easy for me to snap out of it. And I don't stay mad, too long. Life goes on whether we're grumpy or not, might as well keep smiling.
Lately, I've been going through kind of a tough spell. A lot of stuff kind of hit all at once, you know that sort of thing. Life is still amazing, but I'm kind of exhausted and not really feeling it, just to be real.
Sunday morning was kind of tough, just kind of woke up, didn't really want to get up. Didn't see the point. I did because I'm an adult and I have to. I still gotta get stuff done. I kind of muddled through the morning. Javy woke up, I got him up and we did our usual morning snuggle. Then I noticed something, I instantly felt better, holding Javy in my arms. Now I'm not trying to be corny here, I know that every parent says that they're kids make them happy.
This made me think. I think, I now fully believe in the transfer of positive energy. Think about this, Javy is the poster child of innocence. No guile has ever come out of mouth. He's never judged anyone. He's never uttered the phrase: "I can't believe she's wearing those shoes with that outfit." I don't believe that he's ever hated anyone. This doesn't mean that he has open arms for anyone, he is discerning about who he likes to hang out with. He's never gotten road rage and purposely tried to ruin some random tourists vacation, because they did a u-turn right in front of him. (Not that I've ever done that.) He's never been vindictive. If he's feeling bad, he doesn't try to make everyone around him miserable, too. He doesn't complain. He doesn't hold grudges or sulk. Javy is pretty real. He smiles when he's happy and doesn't when he's not.
Maybe this was obvious to other people, because people have always told me that Javy makes them happy. I'm like, yeah, yeah, he's a smiley happy kid. But I think he's just got some really positive vibes and he just gave me a whole new perspective on life.
I've always tried to make this blog positive. I want it to be about awareness of what it's like raising a kid who needs some extra help. I want it to be inspirational. I hope that I've never given the impression that our life is perfect, because that isn't what I was trying to do. I usually ride through the problems and then post about how everything came out and what lessons were learned. I don't blog in the moment, because then it would be hyper-emotional. I was raised that you don't whine about your problems. It's okay to talk about problems, but you have to come to the table with solutions, too. So that is why I write the way I do.
But I also like things to be real. I regard sincerity very highly so I hope I haven't put off any vibes that we lead this life of grandeur. I get frustrated. I yell at the dog, especially now that we have three and they all come when you call one. I get down on myself. But it's usually easy for me to snap out of it. And I don't stay mad, too long. Life goes on whether we're grumpy or not, might as well keep smiling.
Lately, I've been going through kind of a tough spell. A lot of stuff kind of hit all at once, you know that sort of thing. Life is still amazing, but I'm kind of exhausted and not really feeling it, just to be real.
Sunday morning was kind of tough, just kind of woke up, didn't really want to get up. Didn't see the point. I did because I'm an adult and I have to. I still gotta get stuff done. I kind of muddled through the morning. Javy woke up, I got him up and we did our usual morning snuggle. Then I noticed something, I instantly felt better, holding Javy in my arms. Now I'm not trying to be corny here, I know that every parent says that they're kids make them happy.
This made me think. I think, I now fully believe in the transfer of positive energy. Think about this, Javy is the poster child of innocence. No guile has ever come out of mouth. He's never judged anyone. He's never uttered the phrase: "I can't believe she's wearing those shoes with that outfit." I don't believe that he's ever hated anyone. This doesn't mean that he has open arms for anyone, he is discerning about who he likes to hang out with. He's never gotten road rage and purposely tried to ruin some random tourists vacation, because they did a u-turn right in front of him. (Not that I've ever done that.) He's never been vindictive. If he's feeling bad, he doesn't try to make everyone around him miserable, too. He doesn't complain. He doesn't hold grudges or sulk. Javy is pretty real. He smiles when he's happy and doesn't when he's not.
Maybe this was obvious to other people, because people have always told me that Javy makes them happy. I'm like, yeah, yeah, he's a smiley happy kid. But I think he's just got some really positive vibes and he just gave me a whole new perspective on life.
 |
| Cruising with his homie! |
Thursday, April 17, 2014
Don't lose the steps you've taken!
These are the words that are ringing in my head, right now.
In March, we saw Javy's wonderful new neurologist, Dr. Lee. He explained to me how Javy has cerebral palsy and an intellectual disability (not autism). The question now is, why? Is it genetic, or metabolic, or something else. You see, I had been under the impression that Javy didn't have cerebral palsy, because doctors had told me that he doesn't have cerebral palsy. They used it to describe him, but they said that the MRI's of his brain were normal and he had a big regression when he was about 3. Kids with cerebral palsy, don't regress. Cerebral palsy was just an umbrella term, they said.
But finally, I can say Javy has cerebral palsy and an intellectual disability. This is good news to me, it means Javy can move forward. His language skills are at about a 15 month level and his problem solving is at about 12 months. He simply thinks like a baby, so we have to take a step back and stop trying to make him push complicated buttons to speak. He verbalizes, now we're verbalizing with him. His grandma is a big help with this and she can get him to mimic her sounds.
Last night, when I was reading a book to him, he started babbling. Before, I would tell Javy you have to be quiet while I read the book, because you can't find out what happens if you can't hear it. I was trying to make him conform to his age. Last night, I let him babble while I read and I interacted with him even more. When I stop reading, he stops babbling. It's a beautiful accompaniment to "Oh, The Places You Will Go."
This made me think, as I've been feeling mighty depressed about my stagnation in weight loss. I workout daily, eat right but I've even gained weight. Two years and four months later, with what started out as baby steps, there's not an ounce of junk food in our home, the whole family eats whole foods. We're about 75% organic. Sitting on the couch for longer than 30 minutes is a rarity. Currently, I'm working on my mental health overall, doing yoga, journal writing and meditation.
Just like Javy, I can't lose the steps of taken. I spent 38 years of living a mostly unhealthy existence, so I can't let a minor setback keep me down. We gotta keep taken steps forward.
In March, we saw Javy's wonderful new neurologist, Dr. Lee. He explained to me how Javy has cerebral palsy and an intellectual disability (not autism). The question now is, why? Is it genetic, or metabolic, or something else. You see, I had been under the impression that Javy didn't have cerebral palsy, because doctors had told me that he doesn't have cerebral palsy. They used it to describe him, but they said that the MRI's of his brain were normal and he had a big regression when he was about 3. Kids with cerebral palsy, don't regress. Cerebral palsy was just an umbrella term, they said.
But finally, I can say Javy has cerebral palsy and an intellectual disability. This is good news to me, it means Javy can move forward. His language skills are at about a 15 month level and his problem solving is at about 12 months. He simply thinks like a baby, so we have to take a step back and stop trying to make him push complicated buttons to speak. He verbalizes, now we're verbalizing with him. His grandma is a big help with this and she can get him to mimic her sounds.
Last night, when I was reading a book to him, he started babbling. Before, I would tell Javy you have to be quiet while I read the book, because you can't find out what happens if you can't hear it. I was trying to make him conform to his age. Last night, I let him babble while I read and I interacted with him even more. When I stop reading, he stops babbling. It's a beautiful accompaniment to "Oh, The Places You Will Go."
This made me think, as I've been feeling mighty depressed about my stagnation in weight loss. I workout daily, eat right but I've even gained weight. Two years and four months later, with what started out as baby steps, there's not an ounce of junk food in our home, the whole family eats whole foods. We're about 75% organic. Sitting on the couch for longer than 30 minutes is a rarity. Currently, I'm working on my mental health overall, doing yoga, journal writing and meditation.
Just like Javy, I can't lose the steps of taken. I spent 38 years of living a mostly unhealthy existence, so I can't let a minor setback keep me down. We gotta keep taken steps forward.
 |
| Javy, just chill, ain't nothing getting this boy down. |
Wednesday, April 16, 2014
I want a life like bone broth!
There's a pot of bone broth simmering in the Crockpot, as I write this. I paid four bucks for a package of grass fed, local ox tail. These simple bones will make a nutrient rich broth, full of collagen, glucosamine and chondroitin. And it's not for just one meal, it's for many meals.
This made me think: I want our life to be this simple.
Simple days, tasks are completed with plenty of time to play.
Simple relationships, love is given and received, and life isn't sucked out of you.
Simple nights, with quiet time and deep sleep.
Simple goodness, we're always ready to help someone, however we can.
Simple isn't synonymous with boring, by any means. Living simply means that when the adventure knocks on your door, you can go with it because you're not beholden to any dramas or pretensions.
Let's do it, let's live like bone broth!
Here's the link for the recipe I used. Love this guy!
Wednesday, April 2, 2014
Why this is important! Firefighter’s plight - Thegardenisland.com: Local
Firefighter’s plight - Thegardenisland.com: Local
The link above is an article that was in our local paper. Please read it.
The above story is about a friend I've come to know since I've lived on Kauai. I became acquainted with Karl whenever I worked at the airport. I remember the first time I met him, he was flying out with his son and his wife. For obvious reasons, I am always drawn to special kids and went over to help them out in the security line. Then over time, I noticed Karl flying out in his Hawaiian Airlines flight attendant's uniform. Then a few days later, he was flying out in board shorts and a t-shirt going to work at the fire station. Over time, I've gotten to know him and his family and I can tell you that for five years, this guy flew out consistently and I could set my clock by his schedule at the airport. But you would have never known that his schedule was causing him any stress. He is always smiling, always respectful, and always willing to stop and ask me how Javy was doing. The only time I ever saw him upset was because his son was going to be away on the mainland for a couple of weeks to spend time with the mom's family.
Some might read Karl's plight and think that's too bad, but that's the breaks. He tried, just got to keep commuting. I mean, my brother drove 3 and 1/2 hours one way to Atlanta every weekend, just to spend 1 and half days with his son.
But this is why it's important. Karl is a caregiver. He's part of a team, team Ethan! All parents are caregivers, but being a caregiver of a special needs child involves a lot of meetings, a lot of doctor's appointments, and a lot extra special care. A special needs parent has got to be on their toes and ready for anything. Ethan deserves for Karl to be at his best. The other members of team Ethan deserve for Karl to be at his best. Karl deserves to be at his best. The citizens of Kauai deserve to have a firefighter who exhibits this kind of dedication. We all win when we have this kind of a guy in our community who wants to take care of his child and be a public servant.
So let's get Karl back to Kauai!
The link above is an article that was in our local paper. Please read it.
The above story is about a friend I've come to know since I've lived on Kauai. I became acquainted with Karl whenever I worked at the airport. I remember the first time I met him, he was flying out with his son and his wife. For obvious reasons, I am always drawn to special kids and went over to help them out in the security line. Then over time, I noticed Karl flying out in his Hawaiian Airlines flight attendant's uniform. Then a few days later, he was flying out in board shorts and a t-shirt going to work at the fire station. Over time, I've gotten to know him and his family and I can tell you that for five years, this guy flew out consistently and I could set my clock by his schedule at the airport. But you would have never known that his schedule was causing him any stress. He is always smiling, always respectful, and always willing to stop and ask me how Javy was doing. The only time I ever saw him upset was because his son was going to be away on the mainland for a couple of weeks to spend time with the mom's family.
Some might read Karl's plight and think that's too bad, but that's the breaks. He tried, just got to keep commuting. I mean, my brother drove 3 and 1/2 hours one way to Atlanta every weekend, just to spend 1 and half days with his son.
But this is why it's important. Karl is a caregiver. He's part of a team, team Ethan! All parents are caregivers, but being a caregiver of a special needs child involves a lot of meetings, a lot of doctor's appointments, and a lot extra special care. A special needs parent has got to be on their toes and ready for anything. Ethan deserves for Karl to be at his best. The other members of team Ethan deserve for Karl to be at his best. Karl deserves to be at his best. The citizens of Kauai deserve to have a firefighter who exhibits this kind of dedication. We all win when we have this kind of a guy in our community who wants to take care of his child and be a public servant.
So let's get Karl back to Kauai!
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