My New Earth work is actually on twiiter.com/BookClubClass It's a text messaging book club. In case you came here from the Oprah website and were wondering where it all is. I'll bring my New Earth Work over here because, I guess this is where it's meant to be. Welcome to Jippyjabber! PS I am auntjippy on the Oprah message boards.
Wednesday, February 28, 2007
I had a heart to heart with his respit worker/nanny and she is now the same loving person I hired. Still always a little late but we calulate that in now. If this works out I might be able to take a regular class.
I did send in an aplication to the Oprah show. It's her new reality show in Primetime. Then I saw her commercial for it and sent in another one. Should I post it? It was hard to write and I am wondering how it will be received.
I have had no sleep. I hope I can stay awake at this class. I want to lay down right now. Oh it's coke blak to the rescue. It does work.
I told my sister in Florida about it and she told me that she writes to them about me all the time. She sent in my picture and Zach's picture. OMG! They should know who I am already. LOL
I like this idea of her new show. It's cool. I would love to be a part of it. I wasn't sure at first then I thought I might come back on the other side as one of the givers .....you never know .
I shoudl enter more contests. I like winning.
Tuesday, February 27, 2007
I am having lunch with a freind/ boss this week. I am not sure why. I hope it means he's willing to hire me again. Just when i have this surgery thing looming out there..... I think he just like to have me around when he's working because I understand him. If you take my grandmother and my grand father and combine them into one person .....this is who this guy is,,,,, I totally know him inside and out.
Sometimes he just wants to go to luch because he craves the food from a restaraunt nearby. He is really funny about that. He'll get it in his mind that he has to have a french dip from Houstons or god forbid something he eats while he's in Vegas. He' ll drive to vegas in that week to get it. He won't enjoy anything else until he eats what he is craving and then he'll eat it three or four times that week. This makes me laugh and it 's kind of like Zachary so it makes Zach seem normal......LOL : )
Monday, February 26, 2007
My sister sent me a link to this. I keep emailing her with things to ask Oprah for me and Zach.
An apartment wheel chair accesible, with a washer and dryer, a trained companion dog for Zachary. A white lab named Bruno.
(Pay off my Tickets). What else. .......take Zachary to Disney or to swim with Dolphins. What would Zachary really love. Anything from the movie Cars.
Are You In Desperate Need Of A Dream Come True?
Is there a special person you know who has suffered a great deal and deserves to have their wish fulfilled...?
What would Oprah Do?
For you? For me? This is so ironic because, I could never take Zachary to Chicago, so I always thought I'd have to say, I love Oprah can she come to LA? LOL and she is coming to LA!
I have to think about filling out this form. Would I do it for myself? I would fill it out but I don't know if I could send it.
Who couldn't use help but isn't there someone in a worse situation?
Just for the hell of it.....everyone should fill out the form and see what you really want. I think sometimes we don't know what we want.
Is she coming to your town?
Friday, February 23, 2007
Apparently I am a Clever Parent
Thanks to Amy Check out her new look She found the post about Zachary on Clever Parent.
Tuesday, February 20, 2007
I am not sure if you watch Primetime and saw how they were shocking children with self injurious behaviors??
"Aversive stimulation" shocking the skin of children with autism or other special needs.
Zachary was self - injurious and at times would have been considered aggressive if you didn't know him or understand how he was interpreting his environment.
It was horrible to see these kids getting shocked. They would never do this to animals. I just wish they knew to try to treat them for pain.
I am so lucky that zachary is getting helped my intelligent and compassionate doctors.
I hope that Zachary's story will be passed around to people who saw Primetime and think that they are so desperate and that they might have hope no mater how messed up it was.
This should not be done in a school by people who are not medically trained just a two weeks traiing and a high school diploma and you can work there. ( probably as an aide)
I know what it's like to watch your child bite their skin. Zachary has scars from biting. I looked like tires rolled over my arms.
I rolled up in sheets and locked up in a closet turn padded cell. Never once did it seem reasonable to hurt him to punish him.
I am so sorry for their suffering. I hope to get my story out so people won't want to try shocking their kids to make them stop.
I am not saying my son is healed. I am not saying this is easy. I am not saying zach is ready to be independent. I am saying we are ok today. I am saying pain medication allows him to stop hurting himself.
Sunday, February 18, 2007
Saturday, February 17, 2007
It' s a love that I never fear loosing. I have to think of the benefits of having this situation. When he's not in pain. He's the most wonderful person to be around.
The other day, he was going around the corner to his room and twisted his foot. His bad foot. I don't know what to do about that. I guess that explains yesterdays post. WHY? god WHY?
Thursday, February 15, 2007
Originally uploaded by jippyjabber.
I wanted to look up some philosophical quotes about Pain. Specifically why children feel pain. I gave up on that after one google attempt.
Jess mentioned a buddhist point on suffering, It's consider to help you feel alive.
Have you read the secret? Watched the secret? I tell you that envisioning perfection is also exactly what is wrong with our society. I wish they would be more careful when they talk about perfection. What that looks like needs to be expanded. Feeling like you are perfect just as you are is what's useful. I have to see Zachary as perfect. Is pain perfect? Well, pain is something and it is in Zachary. Hating pain is almost ridiculous. It's made of the same force.
I trust Zach's soul. Do I bow down to his pain? NO I don't . Do I try to battle it? Yes, I do. It's like quicksand and I think maybe it's just not the way to go. How can I understand this? Let me tell you the joy in moments when it's gone. You can never know this joy. It's a joy that comes from extreme suffering and then relief. I hope you never know this joy. Would I trade days of boring and no joy to give up this pain? NO! I want him to have a real life.
I hear so many times that if there is a disease, it's in my vibe or it was my choice. I have to fix soemthing within myself. How about the kids? What did they do?
So what do you think is there a spiritual answer to children in pain? Is it just a medical question? Why bring god into this at all?
Wednesday, February 14, 2007
I watched the show HOUSE last night and it was about a girl with a pain disorder. She didn't feel pain.
Zachary didn't feel external pain in the beginging. We did role play and got very dramatic to teach him to come and tell mommy if he fell down or got an owie. What I didn't know back then was that his internal pain was amplified. That just normal bodily functions could register to his brain as pain. No wonder he was screaming all the time.
This post is interrupted due to VALENTINES DAY!
Zach's got a huge Teddy Bear he's waiting to give to his cousin. I think we should just go participate in all the love going on out there. It's fun to give a little bear or chocolate now and then.
Tuesday, February 13, 2007
IN the next video the girl talks about how one of her favorite sounds is her moms voice on the message machine becasuse she always says hello rebecca it's mom I'm on m.......and she'd pick up the phone at that point. She said that was her favorite sound in the world. So even if we loose our mental health and ruin our kids live because we want to be neat and tidy.......they still love the sound of our voice.
I think Zachary loves my arm more than anything else in the world. He may not know it but I do. He is actually comforted by the sound of my voice talking to someone else and not him. I used to call my best friend and talk to her lying next to zach as he was having a pain episode and she would ask if I needed to go help him. I am helping him. So he'd be able to relax in a few minutes. It helped me to be able to talk to her too.
This is going to be a short ( for me ) post. I actually missed another day. It's because we are sleeping at odd times. He's sleeping at 6am and well at least he is sleeping. I thought all those offers of prayers got to him and helped him sleep peacfully. Of course it could have been that he was on the couch near me. I get confused it's like day light savings every other day......
Thank you all for your support. When you get it, you then know how much you needed it.
Sunday, February 11, 2007
I TIVO Oprah. I admit it. For some reason I feel scared if I watch it live. Like I am not doing anything with my life. TIVO'd Oprah is guilt free for me. Zach's not sleeping and I am on lifeguard duty again. Oprah helps, well usually. I turn it on and I see THE BOY OPRAH COULD NOT FORGET....... and I am heart broken for him too. Four years old sold as a slave scooping out water in a broken boat with nothing but a tee shirt on. We can live in a world where this doesn't happen. I believe this. OMG I have to believe this. How else could I ask for help for a white boy born in America. A white boy in America has just about every opportunity, well, he certainly can knock on any door he wants to. It might take more gusto but any boy in America, can choose his path in life. My mother gave me up so I have a small idea of where that hurts. I have no idea what it would feel like to be sold into slavery at the age of four by my own family. Oh, what to think about these two boys worlds apart? Mark and Zachary.
I know that pain is debilitating. I know that neither Zachary or I can take advantage of being American or offer more than our good thoughts to those fishing children as long as he suffers so much. I suffer with him. I try not too. I promised myself not to suffer so much but to be stronger for him. I want so much for Zachary. Also, I want more for those boys than to just be free from working the fishing boats. The globe is shrinking, they really are our neighbors children. It's true, if some stay at home mom from middle America can save seven of them. They can't be that far away. From his eyes to her heart.
I just wanted to say that I thought about it. How dare I ask people to help. THe MAGIK clinic sees many many kids. Zach's just one of them. I see them in the waiting rooms sometimes. How dare I complain about anything. Pain and seeing it in a child will bring you to your knees. It will hurt you too whether it's in the f eyes of the fishing children or in the bodies of the patients at Children's Hospital. I feel like an African Lion when I ask why do children feel pain? It makes me wild and living in a disapearing world. I'd like to stop all pain. I think pain is not necessary. I hate pain. I think it gets in the way of real healing. Pain causes more pain. I think the less pain in the world, the better.
I want everyone to move up a lot. Take Mark and put him in Zachary's room. Let him be a little boy in the most magical way. He'd have toys and books and a TV that looks like a car and a big bed with pillows a stuffed whale and more cars. He'd play in this room in a way Zachary never has. I want play to happen in his room.
I also took the time to compare Zachary's life to other boys. How sweet he is.... How much more I'd love to give him. How much I'd love to show him. If I could take him more places where would we go? I love to imagine him pain free and happy in places far away. To see his cousins, to beaches, castles, Disneyland, Seaworld, Africa. Yeah, under that pain and disease is a little boy that no doubt pack up his toys and pass them out to orphans in Africa. He'd go to Africa and work a day as a slave in a fishing boat ( if I'd let him ) to help stop the fishing children abuse. To give a boy a chance.
So yeah. I do, I dare ask for help becuase I believe there is enough and I believe that the good done here can lead to many good things. How do I compete with Oprah......uhhhhh I don't. LOL
Saturday, February 10, 2007
Thank you for letting me be real.
Thank you for letting me tell the truth about my life and have dignity.
Thank you for seeing the prescious essence of my son. I promise it's even more magnificant in person.
Thank you for not looking away.
Thank you for not asking me to hide.
Thank you for letting this be enough. It is all I can do with my life right now and maybe ever.
Thank you for understanding that I choose to be OK with that. Although some dreams die harder than others.
Thank you for giving me friendship and saying hello to my spirit. It makes me stronger.
Thank you for realizing that there is no way to be good at this.
Thank you for staying when I am weak and reminding me that my strength will return.
Thank you for living your good life around me. I need to see the joy in this world.
Thank you for your encouragement and your confessions of maybe making another choice.
Thank you for ignoring my insanity, my inadequacy, my unwanted, unnamed, unclaimed, unsettled, roving, silent anger.
Thank you for letting me, not believe in god while I rely so heavily upon him. Her, of course I meant her.
Thank you for watching and most importantly hearing the sounds of my son's pain. It needed to be diluted.
Thank you for letting me place the big questions on your shoulders for a while. I am tired of asking them.
Thank you for coming and helping and wishing for better days. Thank you. Thank you. Thank you.
Friday, February 09, 2007
Go see fussy about fussy read Zachary is a Peach it's about my Zachaary! Can you believe it? You have to read about the halloween costume incident ( damn it I can't find the link to it! I will come back and fill it in. I barely have my eyes open yet and it's almost 2pm ( yes PM) .( Click on) Giving birth in her bathroom, it is a classic too. You can't go wrong at fussy. She is smart and more than I thought because she mentions how hard Zachary is trying. He is trying and I could not be more proud. I am touched that she mentions him in this way.
I emailed her to see if she'd post about Zacharywinsagain When you click on the link you can read my email to her.
Note to self...... becareful when sending emails, people might need to post them one day. ( she asked, I said yes ) I have decided not to call myself a writer but a girl who has something to say, just to get away with bad spelling and bad grammer. I might be rethinking that soon. The most unexpected thing and weird thing is to see people talking about me. I wasn't expecting that. Note to self, don't be so lame because people might post/ comment about you one day. ( seriously thank you Miriam!)
When you go to Zachary WIns Again you'll see my first donater in the links list. A family story. You might assume it's another family with autism or of a child suffering from one of the many disorders that Zachary suffers from. IT's NOT!
Did you get that? What a true hero! A family story is a good story and one of my favorites. STOP THE PRESSES!
I just clicked on my link to Amy's blog A Family Story and go see what she posted today! Also, so I could link to her..... Talk about feeling like part of the family! She has linked about Zachary no, wait, her whole blog entry today is about Zachary and I am learning that means Jippy too.
Below is something I lifted from her blog to show you how amazing she is........
There is a standard of being a mom, a career person, a woman. One with excellent taste in shoes! ( no joke I have to find the psot) I go there to see what a family means because, I need to see it working. It keeps a dream a live in me.
She isn't really in my village and I thought I would be kicked out of hers. That is according to the rules of a world we all complain about. A shallow unforgiving world. She isn't like that, she didn't kick me out. She has been supportive and compasionate. She lives in a normal world and I think it's beautiful. She also rises about it in a way that never makes you feel like you are beneath her. It's hard work to do what she does. I respect her. I don't know, if I would do, what she does as well as she does. I like to say that because it's true and people say it about me all the time and well isn't this a crazy world. If I was her, I just don't think I would be as nice. Zachary, in a way, forces me to do something good with my life. She just straight out chooses to be a kind person.
Finally, I get back to the stuff I lifted from her blog.......here it is..........
"Southern California is a hell of a long way away from North Carolina, but if I can help one child in his treatment with a pain disorder, then it's worth it."
That's what she said on her blog and she was my first donator, I salute her! So she isn't talking smack. In fact she never does.........she is brilliant......She is honestly putting out the effort to be successful in everything she does.
There is one thing....... if you've ever seen a blog where people put of pictures of dolls and try to pass them off as children.....LOL Honestly, it will be your first thought. Dolls! A Doll Go see!
Help could not have come at a better time. I am honestly beat down today. Zach's new meds have kicked in. The meds that make everything worse but might help his foot. It's happening.....That 20 seconds of pain video clip went on all night last night and into this morning, actually into this afternoon. Just like old times. Except I don't feel alone. I don't feel afraid. I feel the fussy world behind be. I feel a whole family and friends behind me. Before I was a blogger and had the support from all of you. I had Dr Joseph and Dr. Gold, our pain team from Children's Hospital Los Angeles. Magik clinic Making Aches Go Away In Kids I have called Dr. Joseph anytime of the day or night. He does what I call, the math of Zachary. He talks me down off the ledge too. How does he do it? He 's funny and compastionate. I would be a tragic headline with out their MAGIK!
Thank you fussy and thanks to your people! Thank you A Family Story and to your people too!
Ok so go see what it's all about ..Zachary Wins Again He is a peach and he's here on this planet working things out. I don't know why children sufffer. I do want it to stop. So please help if you can.
Thursday, February 08, 2007
Originally uploaded by jippyjabber.
My grandmother sent me this prayer. She recenlty passed away last year. I guess it's part of why I still have the door with the prayer.
You might think I was filling in the blank with Zacary's name but usually it was with my own!
Originally uploaded by jippyjabber.
This is the cloest that I lived in with zachary wraped in sheets with pillows nailed to the wall. My own padded cell. We used it before Zach was treated for a pain disorder. He had a large egg like contusion on his head that he would reopen. We used to call him a unicorn. Later we used this closet for puppets. I supose it's time for a new door. You can see it's filled with toys and games now. You can barely see a prayer taped to the door.
Wednesday, February 07, 2007
A new blog just to promote the six degree charity badge. Please pass it on if you can.
I just wanted a place to keep record of Zach and share his journey and to ask for donations without scaring the shit out of people. LOL
Honestly you all of very kind to me. In the world of autism it's brutal. Some higher functioning Autistics hate charites because they feel like "we" are telling them something is wrong with them and they don't belong. I understnd that and it would be great if zach felt that way one day too. It's just that it will take science and medicine to get him there. ALso other parents hate that Zach takes meds and they can be rude. I got yelled at " you are poisoning your child" because I let him have icecream.... Fuck it- I poison myself everyday ( some how or another) .....it's the most fun I have...LOL Diet helps these kids but so does the occasional birthday party. If it cured him he'd never eat icecream.
I wonder if this could be harmful.....I want to try it......
On the bottom of this page is a movie blogger button. I wanted it in the side bar and I'll fix that later.
So if you want to promote your site as a movie or screenwriting site. You can get listed on this blog roll.
I would caution that they are listing every article and not just the ones listed Film or movie....... I don't mind enough to go delete them. They found something I wrote about Mel Gibson's movie ruining my script and listed me and then contacted me.
Maybe that is how it works.
I like personal blogs. I like pro blogs.
A nurse from the genetics clinic called me today. She left a message and didn't say what it was about. How annoying!
It could be lab results or the EKG that is supposed to happen already. I called her all day and never got a hold of her.
Zach is completely on Empty. He had no energy but he ate something so I'm not headed to the ER.
That crazy bridezzilla who cut her hair ( did you see that You TUbe video) is on Jimmy Kimmel and I really can' t wait to see if that was .....and yep she is an actress...( they all were) ..... I knew it all along!!!! But she did have to cut her hair for real.
Looks like a long night for me...... I am going to go think up some fake You Tube Video because I just don't get enough attention.
Monday, February 05, 2007
The Last Story Structure Software You'll Ever Need.
I read about this program over on Planet Pooks.
Now the idea of structure sounds good.
This program is serious. You have to choose a title and you can't go on if you don't. Up next is your log line.
I've been using a 'working title' 'Fear of Knives.'
I'd have to say that this story has had a real abstract birth. To make it interesting I've had the profound experience of life meets art. Some bastard doctor is creeping into my story. ( my doctor not any of zach's)
I've let him in but it also pushed me out. So it's time for me to teach this fucker who's boss.
So maybe it's starts with the title. Then the logline. Then one long sucsession of following the rules...............
As a kid that's all I wanted the adults in my life to do ....was follow the fucking rules. ha
So now's my big chance to live by the rules. A title and a logline. How hard can it be?
Sunday, February 04, 2007
I am really glad my sister came over. She is good at playing and makes Zach happy. I got to the store and the lady at the grocery store was wondering where is Zachary? " Where is your helper?" I love living in Pasadena!
I spent a lot less money with out my helper............ : )
My sister got Zach to eat something and that was all he ate all day. That's not cool with a mitochondral disorder. He's supposed to eat every couple of hours.
I picked up some of his favorite candy and he wasn't interested. Now, I am going to try to this liquid vitamin VIBE junior. Another sister brought it back from Minnesota.
Thank God for sisters!
PS ( My Florida sister ROCKS) : ) GO MEG!
I am not so sure I want to be on a massive fundraising mission. You know when you are in an airplane and they tell you to put on the oxygen mask first before you try to help anyone eles........ I do want to share Zachary's story. I want other kids who are suffering to get help. i've been involved in many different programs. They been successful and they help lots of kids except of course Zachary. How ironic is that?? I really need to help zach. I am on a mission.
Saturday, February 03, 2007
The six badges that have the most number of donations between January 18th and March 31st at 11:59pm ET will get a matching grant from Kevin Bacon. Multiple donations from a single individual to the same Six Degrees Charity Badge will only be counted once.
Friday, February 02, 2007
Thursday, February 01, 2007
Sometimes being with Zach is like being a life gaurd. I can sit for hours and watch his breathing or just make sure he isn't hurting himself but biting on a cold rag that I give him.
I think in pictures so I just see my story as movies in my head. Lately, I had a breakthrough and let my past experieces into my movie. I am getting used to it. Just when I was ready to give myself a break from being frustrated with my writing goals...... the truth is revealed. I need this, I need this movie to play in my head and I need to think it's more than just a coping mechanism.