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Pensacola Beach Report

The best update from Pensacola Beach Blog.

Summer Morning

He comes to me, underwear on backwards as usual, no shirt.  It is our typical Florida morning: The sound of the fan running in the kitchen already.  It's so hot outside, we keep the house cooler with fans and not just the AC set so low.  He's all tan and long legs.  He shoves the empty cup in my face, indicating he wants more water so he can go out in the backyard and spit through the space in his teeth in long arcs across the patio.  He is apparently preparing for the Olympics.  I am going to have to get my measuring tape out and see just how far that stream of water travels. I go out to get the mail shielding my eyes from the blinding brightness of the sun.  A biplane drones lazily overhead as I quickstep in my bare feet over the hot pavement to the mailbox.  Suddenly, a very large dragonfly hovers right in front of my nose.  Good morning!  On the way back, I turn on the sprinkler to give my wilting garden a drink.  Back in the AC under the fan I peel cold peaches into a bowl.

Our day begins.

Still Life by Candice Ronesi actually called "Summer Morning"

We weep

Pain

This is an excerpt from Kahlil Gibran's The Prophet.  I was playing Library Angel. You know when you stand in front of your books and ask a question and then just randomly open a book? Oh, I thought everybody did that.  Anyway, I had forgotten what a wonderful book this is. I read it when I was 13 or 14 years old. It is worn out and has pencil markings and underlines.  I had what I consider to be a spiritual awakening around that time, and it was one born from pain.

And a woman spoke, saying, Tell us of Pain.

And he said:

Your pain is the breaking of the shell that encloses your understanding.

Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.

And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;

And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.

And you would watch with serenity through the winters of your grief.

Much of your pain is self-chosen.

It is the bitter potion by which the physician within you heals your sick self.

Therefore trust the physician, and drink his remedy in silence and tranquility:

For his hand, though heavy and hard, is guided by the tender hand of the Unseen.

And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears.

Summer Night

Had I not washed the camera in our washing machine, I would have taken some incredible pictures tonight.  Although, probably, they would not have conveyed half the beauty and awe that I experienced tonight.

Liberty is a nature child.  Even in this heat, he loves to be outside.  He wanted me to go swing with him around 8 P.M.  It was still pretty light outside, but I just could not bear any more humidity nor did I feel like getting bit up by mosquitoes and other assortments of flying teeth.

Anyway, I was sitting in my rocking chair and looking through a window in the living room out to our backyard where Lib was happily sitting in his swing.  Then it hit me.

He was looking up.  He was looking at the changing light, the clouds, the sunset burning towards twilight.  He had a look of wonder on his face.  It was so beautiful, his face full of light.  And happy, not pestering me to come swing him.  Just hanging.  The way I used to with my friends on summer nights in Tennessee, lazily lying in the grass, awaiting the entrance of fireflies.  He stayed out there for a little while, sometimes leaning back in the swing, toes up, still looking at the sky, his eyes following arcs of chattering birds. 

He never used to do this.  He would be focused straight ahead, unaware of much going on around him, or at least that was my perception.

I watched the colors change and a brown gray mist fill my living room  as the sinking sun sputtered  its dying light.

Then I went outside and what I saw took my breath away.

There was a bright half moon and several diamond stars against a lavender and dark blue sky with cotton candy clouds backlit by the sunset.  Chimney swifts darted about like boomerangs, looking for a place to bed down for the night.  The katydids were in full symphony with the cicadas, and as Lib waved to me, the bullfrog chorus began.

I was enchanted.

My little boy.  He seems to have fairy dust all about him.

Courthouse News Service

Courthouse News Service

Summertime

Liberty is back in camp as of 8:15 this morning. The first week is always a getting to know you kind of thing, but he was very happy to have some other kids around and a classroom full of new toys. I was encouraged to see balloons, a castle, tents, tons of toys my son loves and a giant playground right out the backdoor.

I came home and dwelt over a cup of coffee. You know what I mean? In the silence, elbows on table, nose in cup, staring out at my backyard.

Yesterday I was watching the end of This Is It - the Michael Jackson movie - on HBO. Lib was playing in the living room. He usually covers his ears lately when he hears music. He heard the deep bass begin for the song "Beat It." His little shoulders started to pump up and down. He stood up and really started going to town, right on beat, those little shoulders pumping harder. It was adorable. The kid was dancing. He has rhythm. He made me turn it up and had me get up and start dancing with him. It's these spontaneous things that give me so much hope.

I love his Spirit.

The time in between school is tough for both me and Lib, though. He needs more structure and it's just hard to get anything done at home, let alone work. We have been living in the pool over at my dad's condos and I have chlorinated hair to prove it!  I look like an aging Gidget.  I am very appreciative of the pool and our little community that has developed over the years. It's so nice to see the "regulars" come back to swim and see how the kids have grown. We discuss everything from weather to politics to recipes. Lately though, we talk about the beach. Most of where we live has been roped off to us in a sense.

Without droning on about the tragedy occurring in the Gulf to our precious wildlife and eventually to the inhabitants I fear, I am going to publish some updates from time to time, especially local ones because really, people need to know what is happening. I will say that some of the most accurate reporting is being done on the ABC nightly news or Good Morning America when they send good old Sam down. I was impressed that he went diving with Philip Cousteau around here so he could report what he saw with his own eyes. That was several weeks ago.

Locally, we are getting the biggest snow job because people want to stay in business at the beach. So, until someone comes out of the ocean covered in tar like the pelicans you see on the tube, the beach is open for business. I mean, if there is a spot that is clear for that moment, they are saying come on down our beaches are open! It's very disorienting and tempting. We want to go so badly. But, there is not one scientist who can tell us that it is safe. And, with Liberty, with all we have been doing to optimize his immune system, why would I chance it now?

It reminds me of the movie Jaws when the town of Amity refused to close the beach!

You can smell petroleum. It burns your eyes and people get headaches. I sent an email to our local TV station just to ask if they have heard anything about health effects. I got a very curt reply, from the weatherman no less, telling me that if I have a headache I should see a doctor and that they certainly were not hiding anything there. I never accused them of such.  So, now I think they ARE hiding something!!  I was simply seeking information, maybe some reassurance or something civil. That email spoke volumes to me. And boy have they been coached. They remind me of used car salesmen the way they advertise the unblemished patch of sand on our coast.

Here is an eye-opening (if not mouth-gaping) article worth reading that was published by an Anchorage newspaper.

Desiderata

Go placidly amid the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons.

Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.

Avoid loud and aggressive persons, they are vexations to the spirit.

If you compare yourself with others, you may become vain and bitter;
for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.

Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself.

Especially, do not feign affection.

Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.

Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars;
you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.

With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.©

Max Ehrmann 1927

"If seven maids with seven mops
Swept it for half a year.
Do you suppose," the Walrus said,
"That they could get it clear?"
"I doubt it," said the Carpenter,
And shed a bitter tear. - excerpted from The Walrus and the Carpenter, Lewis Carroll

This phrase has been repeating in my mind a lot as the oil along with the frustrated and angry locals spew. Watching white-suited workers try and pick up an assortment of oily, gunky stuff on the beach while millions of gallons still leak, well, it almost seems like futile effort. This thing is too big to get your mind around let alone to predict what will happen.

I have been running for cover, I won't lie. As much as I adore Sam Champion, I am sick of seeing him on our beach. A lot of people here are disoriented about our now uncertain future. I met a woman in the pool today who works for the Better Business Bureau. She said that there are nothing but cancellations on the beach. People are angry because they cannot get a refund on their deposits which are in the thousands of dollars. They apparently signed a contract (in fine print no doubt) that says their money may not be refunded unless the government closes the beach. And that is not about to happen here. That beach is staying open until the last toxic minute. People are talking about ghost towns and of a way of life lost forever.

How about that Kevin Costner, though? God love him. He had to go before congress to get someone to listen and lo and behold BP bought 32 of he and his brother's machines and more to come. Costner spent 24 million dollars of his own money to build these things with his scientist brother. We owe him a huge debt of gratitude.

Liberty has been taking swim lessons every day this week and doing very well. Thank GOD for the pool, our new haven from the "siege" out there as Obama referred to it. Since we cannot do anything about the past and the future is uncertain, we are guided back into taking life one day at a time.

It feels strange to not be able to go to the beach. I tortured myself as I drove to the pool this morning, "What would we be doing if the oil spill had not happened?" We would be heading for the sound side called "Quietwater Beach" early in the morning so we could get to the crystal clear tranquil water unsullied by the crowds, so we could watch the hermit crabs totter around with their hard shells on their backs, to have the little silver fish swim around our ankles, to smell the wonderful aroma of seafood wafting from the boardwalk restaurants and the muted sounds of reggae music, to look over at the stretch of water and sky and sailboat. The puffy white clouds with that little tinge of pink on the bottom, the morning sky like something out of a Maxfield Parrish painting. The look of utter delight on my little son's face.

This is our home. This is why we love it.

Now, it is being destroyed. We are in shock and are mourning. Seeing the oil wash in on Quietwater Beach where Sam was standing just about killed me.

"Now what?" I wrote in my journal this morning. I have no answer yet.

I am past the gung ho stage of trying to do my part to clean it up. Unless you have a Hazmat suit and a gas mask, forget going over there. All I can do is watch the assorted armada move around on the big sea to try and suck up the gunk. And no, I don't think Jimmy Buffet can save us.

Our addiction to fossil fuels is a lot like alcoholism. Until you hit rock bottom, no real change can begin. And, rock bottom always involves hurting a lot of people and losing everything. The good news, I suppose, is that people will turn to alternative sources of energy eventually. New green businesses will spring up. Hopefully, we will look back and see this as the pivotal point in history when we were forced to really begin to embrace alternative and sustainable sources of energy or face ruining our planet.

I will hang onto that hope like a life preserver. Something good MUST come from this now.

Last Day of School and Liberty Report

Liberty's last day of school is today. I am taking him swimming as soon as he gets home after lunchtime. We have had a few leaps forward lately. As always, they come on gradually and are subtle. Words have been popping out spontaneously and he is now doing lots of mimicking and understanding a lot more. I think that the seizures were one of the major complications for Lib. He has been doing beautifully on his medication. He's only been on it since February and has not had one seizure. And, since the time we started the medication, the feedback from his teacher is that he has been making major leaps and bounds since that time.

Last night, my cell phone was going off in my purse. Usually, either Lib hates the sound or ignores it. I said, "Let's get the phone, that could be your Daddy." He got excited and raced to find the phone. He opened it and listened expectantly. He actually tried to talk to his father and blurted out, "Hi!"

This a first!

Constipation is still the bugaboo, but getting better now that I have begun trying him on Liver Life and CytoFlora by BioRay. As I ramp up the dosage, if I see any major improvements I will share that on this site. For now, we are in the early stages. These products have apparently helped a lot of children on the spectrum, and a very nice pokesperson is always available to ask questions - a mom with a child on the spectrum herself. It's kind of exciting. We also have an appointment tomorrow with our neuro doc that has been put off since my sister's ordeal.

And a summerful of swim lessons, camp, and fun at grandad's house.

I am planting okra in my garden today (whoo hoo) and sending prayers to our Mother Earth as I dig my hands in the soil. A very dear friend of mine used to send me to her garden to pull weeds when I became anxious and it was the best therapy. The gulf issues go on and on. I decided I would find a place and activities to raise my energy and not fret, so for now, looks like it's the garden and the pool! Not a bad combo.

Happy Summer.

Jimmy Buffet has bought a hotel on Pensacola Beach, which will be the first ever Margaritaville Hotel. Having grown up in Florida, Buffet's music was the backdrop of my young years, loving his albums, A1A and Living and Dying in 3/4 Time. A lot of people cannot relate to Parrot Heads but believe me, if you have grown up around here like I have, his music is as familiar and comforting as the blood running through your veins. You cannot sit atop the white, sugary sands of Pensacola Beach and look out at that beautiful emerald green and Caribbean blue water and not hum, "Mother, mother Ocean, I have heard you call..."

But, I wondered about the timing of purchasing this property. Either it will really help the economy here, or it was a stupid move on his part. We won't know until it all plays out.

I am talking, of course, about the enormous gulf oil spill. The oil reached our shores a few days ago. Each morning we watch the "Gulf Oil Tracker" on our local morning news. You've probably already seen Sam Champion from Good Morning America here and CNN. In fact, my sister and I went yesterday to the beach to check things out. The beaches are still beautiful. Many people were out, but there were not too many in the water. Our beaches are still open but awaiting the Coast Guard to close them. Small groups (very small, maybe 4 people?) in suits and gloves, BP employees apparently, were picking up debris (which included a dead, oil-soaked pelican). It just seemed strange as all around them people played and business at the beach went on as usual.

We stopped to eat lunch at a picnic table just outside of the Gulf Island National Seashore on Fort Pickens. Lib was just dying to go into the water. He feels the pull of the ocean and he loves it so. I only let him play in the water a little bit. Then, my sister said she smelled petroleum. We left to go to the museum at Fort Pickens and when I was wiping the sand off of Liberty, there was a trace of oil staining his foot! Apparently, the oil is beneath the sand.

I keep telling myself that there are always new beginnings in endings.

Endings are on the minds of all of us who live along this beautiful Gulf coast. Did you know that 40% of the world's seafood comes out of the Gulf? Did you also know there are 4600 oil rigs and platforms in the Gulf? So many people are more concerned about the economy than the wildlife. They don't seem to understand that on top of lost jobs, of a loss of a way of life, indeed an end of an era that is happening right before our eyes, the food chain is being broken. If the plankton die, so does everything else. If the oil kills our coral reefs, the seabed nurseries of so much life, then nothing can survive. Will the Gulf become a dead sea? This is what we mean my catastrophe of worldwide proportions. When the oil first began gushing, no one here was talking this way because it had not shown up yet. Even the local newscasters were very careful (instructed?) to make sure they re-iterated emphatically that our beaches were still open for business. "No oil on our shores!," they boasted. And of course, BP had given businesses in Florida millions to advertise this fact and try to help the beach businesses prevent loss of sales.

I recall in many apocalyptic predictions of the sea turning red. Well, the oil sheen turns the water red. Is this the end of times?

I really do not believe in the end of the world, literally. But, perhaps this event heralds the end of the world as we now know it. And it's high time. I believe we are in the dawn of a new age, Earth II. We have got to acknowledge our relationship with nature and work with Her if we are to survive.

It would be very easy to become depressed and believe me there is a lot of that around here as you might imagine. But my sister and I were discussing this yesterday. I do not want to put my focus on what has already happened - I cannot do anything about that. The best use of my energy then would be to focus on where I can be of help. I want to be part of the solution, not part of the problem. I am not sure where to focus my energy yet, but I am trying to think positively, hoping a path will open up. Since the oil is still gushing, it really is anybody's guess where we will be by August.

Please see my sister Susan's blog for some really great pictures and articles on what is happening here. All we can do is photograph it and let others know what is happening so we do not allow this to ever happen again. If we don't change now, then we are surely lost.

Will people come to Jimmy's place just to see the last of the Great Gulf? Will we be able to breathe the air when we do? If anything, maybe having Jimmy's place can help us forget our troubles for a little while and maybe also to remember what we have and appreciate it and be proactive. You can read what he said here as he walked with Governor Crist on our beach on Saturday. I wish I had not missed it.

In the meantime instead of feeling helpless, I got this visualization from Adam Dreamhealer. I think I will use it. I am setting up an alter on my fireplace mantle. I have my shells around me, my pictures, the treasures this place has brought us.

Please pray for us. Pray for the Gulf. It affects the entire world. Don't become desensitized to what is happening by the television. We do need a miracle right now. Let's all put our hearts and minds there. Please include the great Gulf of Mexico and all of its magnificent creatures and people who live and work here in your daily prayers and meditation. Mind is non local, it has no boundary of skin. What you think and feel does affect the world.

Signs

Thursday marked exactly one month since my sister passed away. To say that it seems unreal is an understatement. And, as so often is the pattern of grieving, we cannot remember where we put things, simple tasks take twice as long to do as before. We often make no sense when we speak. We find we are fuzzy-brained. The members of my family seek out ways to laugh when we can and find comfort in each other's presence. Personally, I am watching Everybody Loves Raymond the way I used to watch I Love Lucy. I cannot miss an episode. We swim in the pool a lot. Have lunch together. Cook. Read. I am probably doing a jigsaw puzzle a week, a place to rest my mind.

At about the 2-week mark of my sister's passing, my sister Susan and I received a rash of signs from her.

One morning, I got into my car to go to the library. I had cleaned out a dresser drawer about a week before this and found some cassette tapes. I thought they were some old music cassettes and my car actually has a cassette player underneath the CD, so when I found the tapes, I just put them in my purse, so I would not forget to check them out in the player in the car. So, I was digging for my keys and saw the tapes. I put the first one in as I was traveling down the road and sure enough it was an old music tape I had taped over with some other nonsense for some reason. It was basically trash. I pulled the next one out and did not hear anything. I was about to eject it when I heard a beep. Then, I heard someone saying something, - they were leaving a message. Turns out it was a tape from my ancient answering machine back when I actually had one with a removable cassette tape! I loved that thing but it go so old, I had to finally succumb to voicemail.

There were some bill collectors on there, my husband, my father, and lots of long pauses, and then...I heard it. My sister Beverly's voice. She said, "Hey Kath, it's Bev! I did find Liberty's picture at my house after all it wasn't at Dad's. Okay, sweetie, talk to you later!" I just about had a wreck. Keep in mind I had not heard her voice since she had the breathing tube and tracheotomy.

I crept the rest of the way to the library in my car. My sister and I loved to read and exchanged books all of the time. She turned me on to some great authors and got me back into reading at a time when I really needed the distraction with all of Liberty's issues going on. It was and still is a way to de-stress. So, through my tears, I told her hello and wondered if she was really back to give us some signs, and of course, asked her to give me more signs, to let me know it was really her and not just in my "head."

Now I have to stop here in the middle of the story to tell you that the previous day my other sister Susan and I were sitting around the pool and a very large black bird was walking around staring at us. I remarked that there had also been one at my house, very shiny, not a crow, and my father said it was a raven. My sister made the comment that ravens are said to house the souls of people who have passed on.

Now back to the story: I walked into the library, beginning to browse at "A" like I always do and I look down and my eyes fall on a book. The author is "Jo Beverly" and the title is "St. Raven." Chills ran up and down my arms.

I walked down the aisles kind of amazed and dazed and remembered to check out an aisle for yoga books before I left and there was a book sticking out about to fall off the shelf. It was a book by Eckert Tolle. My sister loved him.

That same day, my sister Susan got a letter in the mail from a woman who is in charge of Beverly's memorial scholarship fund we set up at the university. I don't want to print her full name but suffice it to say her last name was ... you guessed it, "Beverly."

If that wasn't enough, the next day, I turned on the TV to a Christian station, one I never have the channel set to, and find a program is just beginning and the name flashes across the screen: "Beverly Exercise" and I hear the announcer say, "...with your host, Beverly!"

Good God, this was really exciting and eerie at the same time. I yelled, "Hi Bev!" I was not completely surprised though. My mother did the same kind of thing, too, about 2 weeks after she passed away, giving me all sorts of unmistakable and amazing signs all in one day. I drew so much comfort from those and still do.

Later, my sister and I compared notes. Apparently she had felt her presence and received the same type of message I did and that was pretty much that not only was it great not to have a body, but that it was a relief to not have the body worry our society has, constantly putting the focus on our looks. She gave us a few more personal messages and, since that day, I have not felt her anymore.

We miss her.

In Memoriam

My eldest sister, Beverly, passed away in a room marked "23" on April 27 after spending 47 days in the ICU. She was 66 years old. She had an infection in her mitral valve which had to be replaced but before they discovered this, her lungs stopped working and she had to have a balloon catheter placed in an artery and was put on mechanical ventilation. She had a fever and Strep infection in her blood from the valve and was on massive amounts of antibiotics to even get prepped for surgery. After one week of antibiotics and being flat on her back on the vent, she underwent a mitral valve replacement with only a 50/50 chance of survival. She had an abscess in her valve and they could only take out so much of the infection without putting a hole in her heart. So, they replaced the valve, and kept her on antibiotics after surgery and just prayed the infection would resolve. It did. But, her lungs would not be strong enough to get off the vent. She had no blood pressure on her own and was on dopamine pressors. One night she pulled her tube out of her nose and coded but was shocked back to sinus rhythm. Another day along the way, we were told to call the family, but she rallied the very next day and after 2 weeks on the vent, they were able to put in a trach tube. I remember when she had the trach placed and got that God-awful vent tube out of her throat. She was smiling and blowing kisses to me. She could mouth, "I love you." Then they realized they put the wrong size trach tube in and she began bleeding from her throat. She had to go back to surgery to have it replaced. We began learning how to read her lips. I got her a white board and, with her glasses, she was able to write messages to us for awhile. But, she was shaking a lot. Some days her cognition was great and she was all there. Other days she was drugged and we could not read a thing she wrote, drawing nothing but squiggly lines. My sister from NY came down and she had put together a photo album that my sister just cherished! Shortly after that, her kidneys began to fail. She had so much fluid her body was bloated and the fluid wept through her skin, soaking the sheets. I would hold her hand and leave huge indentations in her flesh. She had bruises all over her legs and arms. Tubes, lines everywhere. Beeping machines, the blood pressure cuff going off constantly. She underwent dialysis 3 days a week but soon began to not tolerate it. Each time she began to be dialyzed her blood pressure would plummet. She had chest tubes put in to get the fluid out of her lungs. They wanted to replace the nasogastric tube with a stomach tube, but she could not be optimized for surgery. Bev had low platelets, a result of MDS (myelodisplastic syndrome) a blood disorder she had developed a few years earlier. She also had chronic obstructive pulmonary disease and smoked which made it so hard for her to breathe. The turning point came when the dialysis port became infected and she had sepsis. Finally, her liver began to fail. One day, she asked us to let her go. She told us she was hurting. When we asked her when, she said, "Now." None of us were prepared for this. So, after papers were signed, the drips were turned off and the ventilator too. She breathed on her own for awhile. But, after about the fourth hour, her body shut down and she died. I was holding her hand. My sister and her daughter and I were the ones who were with her until the end, though going through a myriad of emotions, we were devoted to helping shepherd her soul to the other side. Her nurse, Tony, our angel, told her she would go to sleep and wake up in a beautiful place. He prepared her by having talks with her about it and then guided us through the whole process in which a room no one ever wants to find themselves in - a sterile, anxious, and sometimes hostile place - was transformed for just a few hours in time into a sacred and holy space.

Through all of this, Liberty has fared well, thank God. Beverly was Liberty's biggest advocate, the one who went with me to every IEP. She was her county's first ESE teacher! She went to bat for people with disabilities and she knew how to get things done. One of her colleagues has offered to go with me to the IEP which happens to be today. Liberty will be changing schools next year.

So much change.

I still cannot believe Bev is gone, that it happened at all, that there was even a memorial service. I know how grief is, it is like a trickster, just when you feel yourself standing on solid ground, a memory flashes back or a realization comes that brings you to your knees. There is no way around it but through. I was with my mom when she passed, too, holding her hand - but she had been in a coma for days, the end result of a long and winding road called cancer. Somehow with Bev, it was different. She was awake, coherent - I still relive it all and probably will for some time. She never closed her eyes and that was a kind of hell for us all.

Now, in the background of all of this the Gulf oil spill looms. Our beautiful beaches, way of life, economy, you name it - all hangs in the balance. The news here is surreal. One commercial commands that if you find stranded animals covered in oil, do not try to help, call their agency right away. Another advertises Dawn dish liquid and shows geese getting soaped up and bathed. "Tough on grease...easy on geese?" It's so sick! Then there were the waiters and waitresses at the beach restaurant crying that they are losing their jobs; the beach being flooded with people last weekend, taking samples of the pristine white sand that is in danger of being tarnished forever. Well, maybe not forever, but for at least 100 years or so. And, if the oil get into the marshes, which you know it will, it will never be gone. This is so much bigger than the Exxon-Valdez. And, you know what? Even scientists and officials at the public meetings won't speculate or tell the truth. They are afraid to tell the people who live and work on the beach that the biggest catastrophe to ever hit our oceans has been going on now for weeks. I suppose it will become apparent with time.

And yet I have been praying. We watch the daily reports of the whereabouts of the big blob on the map and actually breathe a sigh of relief that it has not hit here, though they say when the wind shifts, it is inevitable. It is like bracing for a hurricane that is always on its way, just about to strike. It has already begun to affect New Orleans. I keep hoping that there will be something that saves us somehow. I hope that I am not writing an epitaph for our home. If even the breeze becomes toxic, then we will be moving.

For now, I write, I work, I eat, I put on my clothes, I feed my birds, I bake my bread, I just take it moment by moment. Which I was supposed to be learning how to do all along. This is always the message, isn't it, when there is loss? To take one day at a time, moment by moment, and savor what you can from your time here.

The Way I See It

Temple Grandin has a new book called, "The Way I See It." This is her website. I read some of the reviews on Amazon and I think I do want to read it. I used to think that Asperger's was so different from ASD because the folks with Asperger's are high functioning. BUT, I think that people on the spectrum do share some traits like sensitivity to their environment and perhaps thinking in pictures. At least, that is the way I am beginning to understand it from the little bits and pieces I have read from Dr. Grandin in the last few years. Let me know if you've read this book or her other one, "Thinking in Pictures". I cannot believe I have not even read that one. Here is something she wrote explaining this process.

Just sharing. Back later. Liberty is doing very well on his seizure medications - there have been no more witnessed seizures and he has picked up using pictures, saying parts of words. I am in process of planning his summer which will definitely involve swim lessons again, perhaps some horseback riding if we are fortunate enough to get into the program, and (PRAY) an ABA therapist coming to our house?!

2 Weeks and "Counting"

Lib has been on his medications now for 2 weeks. Yesterday, the teacher told me that he picked out his NUMBERS by verbal command only! He cut out numbers using regular scissors and matched them perfectly. He is now pointing on a regular basis.

He is 7 years old and it looks like he is in the process of catching up.

Not only that, we are seeing more connectedness, more eye contact, more awareness. I am so glad we made the choice to medicate. I would say if you can stop absence seizures naturally, by all means do it, because medications are not a magic bullet either. Drugs are the last things I really wanted to put my son on. However, he is on such a small dose and, if it can make such a big difference, then to be honest, it has brought me great relief. The seizures just got scarier looking.

He was having seizures for so long as we tried various things in different combinations: Taurine, melatonin, DMG, milk thistle, GABA, B6/magnesium, etc. The seizures just kept coming more regularly and faster, too. Seems so many things that were supposed to work had the opposite effect in my son.

Since starting the medication, I have synchronously run into people who tell me their story about their child or their sister or their friend who had absence seizures as a child, took medication, and eventually grew out of them, so I can see that I am receiving lots of reassurance about my decision.

And, my son is happy. He no longer naps every day when he comes home from school. He is using so many pictures to communicate it's hard to keep up. He's trying to get words out.

For Liberty, at least, this seems to be perhaps one major piece of the puzzle found.

I don't know what anything is for...

I was thinking about a line from the Course in Miracles, "Today, I will judge nothing that occurs." Have you ever tried to do that? Refrain from constantly interpreting what anything means? Today, I can tell you that I certainly don't know why my son has autism or why things are the way they are, but the more I detach from needing an answer and the less I judge, the more I allow things to flow. I love Ram Dass and I found this video of him before his stroke.

Blogging Revisited / Seizures

I have taken a hiatus from the blog for various reasons. We have been working with a holistic neurologist/DAN doctor for the past few months, trying to get Liberty's seizures under control with natural products, but last week, the teacher called and she saw something new that scared her. Then I witnessed it, as well. Turns out we were seeing true absence seizures. The other behavior we THOUGHT were absence seizures were not. Go figure!

We were able to obtain an EEG fairly quickly. This time Liberty was not sedated but awake. He had to be put in a papoose from head to toe, but the technician was wonderful. He cried, but really he was just angry. Fortunately, there were clear-cut "textbook" absence seizures recorded on the EEG. He had three while we were there. So, my boy is now on medication. We tried to avoid it, but I do think that this is going to help him. I do not know how many lapses in consciousness he has had over the past who-knows-how-many years. I know that if he was having seizures, they only recently became visible around 6 years of age. The good news about absence seizures is that children usually outgrow them. They can sometimes go into complex seizures, so we chose Depakote to cover both.

I don't feel bad about the medication now, because honestly the seizures scared me worse than any fears I might have about the drug. Lib has been on the medication for four days. I might just be being hopeful, but already he looks more connected and rested. The doctor and I decided that this drug is only a "bridge" until at some point we can wean him off, if we can optimize him on other supplements like milk thistle and GABA. Liberty has had paradoxical reactions to the very things that are supposed to help absence seizures such as taurine and melatonin.

I have learned, as well, over the past few months that the yeast issue in the gut will never really be cleared up completely until the metals are chelated. I have tried the DAN way and I told my doctor this, who is a DAN, that I wanted to try the "other" way, namely the Andrew Cutler protocol. He's a chemist who wrote "Amalgam Illness." Anyway, the AC protocol is "low" dose and "slow" meaning it can take a matter of years. This protocol considers the chelating agent's half-life of only 4 hours, reasoning that after 4 hours, the metals are no longer being pulled from the tissues and are free to move about and become reabsorbed. You can only chelate for around 3 days like on the weekend with an 11 day rest in between and, of course, at that point some metals will get reabsorbed. But, I see many children who actually recover on this protocol with no regressions like I have seen and witnessed in my own son. My DAN doctor is cool enough that he listened to me and told me that whatever I wanted to do he was "on board" with and "let's try it." I am so thankful that I stuck with him! His office is now located an hour and a half away from my town but he does not charge the arm and leg and fingers and toes that many of these DAN docs charge.

I hate that the the autism community is divided like this on the proper protocol for getting our children well, but the truth is no one has discovered the one right way to help children on the spectrum.

I am going on my Guidance and it is not failing me. I have faith. And that is everything at the moment. And, I do think that whatever avenue you choose, you have to feel good about it and not anxious. Here's a great quote by Abraham that I saw the other day when I was deciding to put Liberty on medication:

"Is this pill really an effective pill? I this process really an effective process? Anything that causes you to allow what you desire is the process of coming into alignment. And so, we're not, in any way, validating or invalidating anything. Many offer their "dog and pony show" as being the one that works. And good for all of them. We applaud anything that assists someone in allowing the Well-being that they so much want and deserve, to flow. -- Abraham.

Will keep you posted on Liberty's progress...and mine.

My Nike Model

Liberty sportin' one of his Christmas outfits from cousin Heather and her boyfriend, Jay!

Dr. Julie Buckley's new book came out today!

This is a doctor whom I heard speak right before we went to see another DAN doctor in another state about two years ago. She recovered her daughter when she regressed into autism at age four. She is also partner of Jerry Kartzinel, Jenny McCarthy's son's pediatrician. As "luck" would have it, we got on the short waiting list to see her shortly before I found out she was about to publish a book. I know she participates in what is called the think-tank at the DAN conferences. The word that comes to mind about Dr. Buckley is "genuine." She was so clear in her presentation it about blew our minds the first time we saw her, with all of her printouts about the complicated chemistry that results in autism. Plus, she's just a likeable woman with a wonderful sense of humor. She gave me a lot of hope. I so wish now we had switched to her, but hopefully we can at least get in and see her at some point soon.

Her practice is in Jacksonville, Florida, which is about a six-hour drive for us.

Here is the link to the book below as well as her flyer for Build A Bridge Day on January 10, 2010. This is the day, we are going to give her book to our pediatricians, therapists, teachers, and families. I think it's a great idea.

Check out Julie and her site. She's also on Facebook under Healing Our Autistic Children.

Here is the amazon link as well.

And, below is the flyer!


Build A Communication Bridge on 1-10-10!

One of our most common frustrations as we work to heal our children is the difficulty we sometimes experience in communicating with therapists, or doctors, or even family members who just don’t understand, no matter how hard we try, that autism is a treatable medical disease.

Dr. Julie Buckley has written Healing Our Autistic Children to help us bridge these communication gaps. Short and eminently readable, this book introduces the reader to complex science using office visits and patient stories, including those of her own daughter. Documenting the actual published medical literature on which her approach is predicated at the end, this book also does what every physician should always ask- “Show me the science.”

Many of the autism groups have read this book and are very excited about its potential to reach the ears, hearts, and minds of those who do not know how or where to start in working toward recovery. We are proud to participate in “Build A Communication Bridge Day” on 1-10-10.

On 1-10-10, January 10th, 2010, the autism community will speak with one voice, buying and delivering copies of this book into the hands of our teachers, our therapists, our doctors, our politicians, our family members, communicating as one body the message that autism is a treatable medical disease, the science is published to explain why, and that we need to work together to heal the now 1 in 91 children finding themselves on the autism spectrum.

Hilarious, if you want a good laugh!

Liberty playing with bubbles at Grandad's

He is growing up tall..

They are Here to Teach Us

Video here

Merry Christmas Dad!

Cookin'

Liberty got through only the 2nd round of chelation quite well last weekend. He has also had his dose of Enhansa upped. He came down with what looked like the flu yesterday morning. He threw up twice. He was pale as a ghost, I have never seen my child look SO BAD. I took him to the doctor. They ruled out Strep with a swab and flu because he had no fever. Only a teeny little cough that he seems to always get after chelation.

There is a theory that metals bind to viruses, and when you begin to remove metals, you stir up viruses. Also, the information on Enhansa says that when you begin to titrate the dosage up, flu like symptoms can occur.

All of these claims end by saying that major improvement is often seen after these "sick" episodes.

After an entire day of sleeping and no food except a little fresh juice I made him drink, he bounded out of bed at 1 AM, color in his cheeks and pounced on top of me. He wanted water. He was thirsty. He was smiling and dragging his life-size Pooh Bear around with him. I got him a drink and put him back to bed.

This morning, he's up at 6:30 and says, "Dadeeeeeee!"

25,000 X the mercury...

Take note of this, then go listen to that beautiful soothing music I put underneath this post. Sheesh.

Voice of an Angel - Lib and I cannot get enough of this beautiful song

Bleach vs H2O2

I got an email today that I am sure has been passed around a few times, extolling the virtues of hydrogen peroxide vs chlorine bleach. We've been told not to use bleach around Liberty, but you know there is the matter of cleaning the toilet. I was looking around for some more information on the uses of hydrogen peroxide and I stumbled upon Green Living Tips. I got a lot of great ideas from this site, and have already made up by 50/50 mixture spray bottles for the kitchen and bathrooms. I like information like this. Non-toxic, and cheap!

I got an email today from an organization which I guess I signed up for last Christmas. I really like it. HealthyStuff.org is kind of a watchdog for toys and other consumer products that may or do contain unsafe levels of lead and other metals. I checked out the list and decided to post the link. It is kind of unreal what is showing up with high levels of lead. It's in shoes and sunglasses and popular toys. Because Lib had surprisingly high levels of lead on his very first metals test, it is of particular concern to me.

Every time I pick up something that says made in China, I am apt to put it down--oh, yeah, that is just about everything I touch. Are any of you old enough to remember when "made in Japan" meant something was cheap? Now, you rarely see that and if you do, grab the item and save it. It could be valuable!

The world has changed so much.

I never expected as a parent I would have to keep an eagle eye on our environment. And by environment, that means everything inside and outside of my skin! I was reading this morning on the blog, The Upside of Downsizing, about VOCs in shower curtains. I love Elizabeth's site because she always give you suggestions for replacing the offending items. She also describes the best plants to help clean your environment.

Anyway, you might want to check out Healthy Stuff and see if anything you have around the house is listed there!

Chelation

Liberty had a great weekend and first round of chelation. He is doing better than ever, though I still knock on wood, throw salt over my shoulder, and say some Hail Marys each time those words escape my lips. I am hearing more and more words, though nothing is strung together in a sentence...yet. Will keep you posted. I have to keep a wary eye on the yeast/gut factor from flare-ups during the chelation. But, I'm very happy. I feel like we are indeed on a good road again, after taking a detour.

And, that's all I have to say about that, as Forrest Gump would say.

Other than that it is raining cats and dogs here today and STILL the little hummingbirds brave the weather. It is a lovely deep green outside, but the grass...oy! high as an elephant's eye.

A New Beatles Fan

Liberty has discovered the Beatles, a mere 44 years later. What can I say? I am teaching the basics of music appreciation. I was six years old when this movie was made. Hard to believe. He loves this one:

A Good Read

I am always looking for something good to read. It's no secret that I am passionate about Pat Conroy and consider him one of the most brilliant contemporary writers. But books like Pat's don't come along but once every five to eight to even 10 years. I also don't like books that are turned out in a mill. If I see a writer that is too prolific, I bypass them because I am afraid they will be too fluffy, too amateurish.

Yes, I am a book snob. Utterly ruined by Anne Rivers Siddons and Pat Conroy and others.

But wait! I found another who turns out really good reads. They are funny, thoughtful, contain great dialogue and I find myself totally engrossed after the first page - books you can lose yourself in. Sometimes for me, that is just what the doctor ordered.

I am talking about Elizabeth Berg. I recently read Open House which was hilariously funny and a great tale about a woman who undergoes a divorce and takes on boarders. The next one I read of hers was Home Safe, about how a woman copes and finds her balance after her spouse dies suddenly. The one I read this past weekend which had me studying much of the dialogue was, Say When. Oooh, I loved this. Not a voluminous book, I read it in a day. It's about a marriage on the brink of divorce told from the man's point of view. I re-read many things the female character said...thinking, "I've said that." And looking through a man's eyes is interesting. I was really glad I read it.

Check out her website, then check your library. You'll be glad you did!

It's always hard to post something about September 11, 2001. One of my blogs I visit often has a good post regarding "the worst day" by someone who was actually there. You can peruse it here.

Thank God for My Earth Angels

Liberty's new teacher has finally arrived. I got a lot of correspondence from her last night, including about a four-page questionnaire to fill out about all things sensory, what Lib loves the most, his eating habits, dressing, grooming, names of all family members, pertinent things that I feel she should know, what I want to see this year, etc. She also included a full page bio about herself and her experience.

To say I am thrilled is an understatement.

Did you see Julie and Julia? Well, she reminds me of Julie a lot.

Yesterday, I picked Lib up a little early and went to Robert's for a haircut. Robert is one of our angels. We walked in to soft music playing (a guitarist name Govi..ah, he's wonderful), the smell of peppermint in the diffuser, the stained glass water fountain decorated with pumpkins and fall leaves. Instead of immediately trying to get Lib to sit in my lap with me, Robert and I just talked softly and let him wander around. I finally used the noggin for more than a hat rack and put Liberty in a long-sleeved shirt so the hair falling would not bother him. He came and sat with me in the barber chair, facing me. Robert dipped a comb in water and started to comb Lib's hair, and then my hair. Usually averse to this sort of thing, Lib instead closed his eyes like it felt good, and then he started stroking my hair and smiling. Yes smiling. Robert turned on the electric shaver (no response from Lib) and proceeded to give the kid the cutest haircut he's had in a long time.

Sigh....I am just going to bask in the "things that are going well" light.

I think of other people I consider angels who have no idea how well they are thought of, or that I even think of them. For instance, there is a guy at the Target garden center. I don't know his name, but we recognize each other all of the time. We always exchange greetings and chat about this and that. This man is one of the happiest souls on the planet. He radiates joy. He is always smiling and ready to laugh. So, he registers on my radar. He uplifts me during my day. I consider him one of my emotional supports. He is the reason why I feel that, when I have nothing else to give, a smile can mean everything to someone. So I give it readily, even if people don't smile back.

When I thanked Robert yesterday and told him he was A1 on my list, he said simply, "I just feel I'm doing an important service."

Yes you are, sweetie. Yes you are.

Connecting the Dots

Liberty came home from school today and played in his room as usual. He wanted me to get some more toys down from the top shelf of his closet. He knows I hide them under a blanket. Over the summer, I had let him run amuck because he was so bored and he had every toy that he has ever owned on the floor in a great big heap. Monday, I put everything up in the closet except for a select number of toys I knew he loved most.

He indicated by gesture that he wanted his toys down. I very calmly told him that he would have to put away all of his cars, first. He went over to the heap of cars and put them in their bin. After he did that, I said, "Put up your dinosaurs if you aren't going to play with them, and we will get down two more toys to play with." Sure enough, he put away his dinos.

Then he took my hand and led me to the closet. We got down two more toys.

This has never happened. In the past, the usual scene was that he would get excited and have a fit if he heard "no" in my voice. Forget instructions or bargaining. He did not get it at all. It would be a crying, whining fit, especially if I walked away.

This time, however, he followed instructions. He got it.

Later, I was on the phone, and it is not a portable one. He kept trying to pull me off the phone and I gave him the "wait" sign. He was boring holes through me with those big brown eyes, trying get me off the phone and then he left. I finally was able to get off the phone and I heard plastic rustling. I thought he might be climbing his closet and getting things down - or worse - taking all of his clothes off the hanger and throwing them in a heap. I went running to his room and passed the bathroom and saw him out of the corner of my eye.

There he was, digging through the cabinets, trying desperately to get the toilet paper out of its package. He had pooped in his pants, took those off by the toilet, and had apparently exhausted all of the wipes that were left on the counter. I was so proud of him. He gets it!

I got him some more toilet paper and after he finished wiping (well, we actually had to put him in the bathtub at this point) I high-fived him and he gave me a big smile.

Finally, my boy is understanding more and more.

From now on, I will have the toilet paper out of its package ready to go, and I will have plenty of wipes.

And I will honor his silent plea to get off the phone.

More Cowbell!

Lib and I were riding in the car today listening to a homemade CD of old songs. I cannot listen to Blue Oyster Cult without cracking up anymore. Anybody remember this? The great Christopher Walken, Will Farrell, and cast of Saturday Night Live. Watch Jimmy Fallon crack up.

Come Back to Me

Here is my sweet little boy before the vaccines took their toll on him. In fact, this is the only picture from that time around 2003 that I have from my computer that crashed a few weeks ago. Always remember to back up your photographs. I didn't and I lost over 1100 photos. Am I crazy? Yes I am. Absent-minded is more like it. This particular picture makes my heart ache. My son used to throw a ball. Here he is on our old playground in our old neighborhood running to the basketball court. He would stand under it and wait for me to lift him up so he could put the ball through the hoop. He could not get enough of watching the big kids play basketball and I had to hold him back from joining in their games! He had not been walking that long, I remember.

Well, this is what my biomedical recovery journey is all about. Chelation begins Friday for real. It is my hope to dump the lead and other metals out of his little body that has been there for so long, I can't think about it. I am unaware of what he has spilled over the years though just through natural chelation. We give him methyl-B12 shots in combination with N-acetyl-cysteine (NAC) and folic acid. I know that the NAC is a natural chelator of mercury. The fact that Lib is getting better is testament to all that we are doing. And if it's not due to the biomed treatments, well...at least what we are doing is not hindering him in any way, and for that I am so grateful.

My little boy still has that little sprite of a spirit, so innocent and joyful. I ache to hear his voice. Perhaps it will still happen. I still believe and I still have hope that he will come back to me.

New Blogs on the Block

My new friend L has two great relatively new blogs: Grey Street and Southern and GFCF. Grey Street is her blog about her journey through recovery with her lovely daughter Miss B. Please stop by and welcome her to our blogisphere. She has a lot to contribute to the autism community and is a rather cool person, too! She is looking for recommendations for books for her child to order for Christmas, as well, so if you can help, leave her a comment.

You know, we all have our personal hell we have been through with the diagnosis, before, during, and after, and need love and support. Often our familes can't provide that for whatever reason, and we rely on friends whether in cyberspace or in person. I am so grateful for my blogger friends with whom I have formed an on-line community.

L's recipe blog is one I have added to my cache of GFCF meals, because you can never have enough good-tasting gluten free and casein free foods. I'm always on the lookout and directing other parents to easy meals to make for their kids on the diet. And, being from the South, I am especially happy about this! Her cornbread chicken stuffing? You bet I will be trying that one.

This reminds me of long ago when my dad used to make really great bread, and one of his specialities was cornbread in a skillet using Martha White cornmeal. Always the character, at the end of all of his hand-written recipes for me, I remember he used to write "Loosen belt before eating."

Welcome L & Miss B!