A cure is in our sights!

Vivint is giving away $1.25 Million to charities. Help us win!

Monday, December 26, 2005

Feed The Fish Please...

Merry Christmas! (insert big fake smile here) Unsta-pona time... I used to love Christmas. In fact every Christmas until this year made me feel renewed and hopeful. Until this year, no matter how much was going wrong at the time, I always had faith that things would get better. I have run on nothing but faith and hope for so long now, that I think my belief well just dried up. Don't get me wrong. I haven't suddenly gone atheist or agnostic. I know that God exists, and I'm sure He has some grand scheme planned out for the world. I am just having a very hard time believing that he is going to take care of me and my family. I kind of feel like Bruce from Bruce Almighty when he compared God to a mean kid with a magnifying glass, and himself as the burning ant. I don't really feel like God is out to get me in that way. To me it feels more like I'm a goldfish God stuck in a fish tank and has forgotten about. Here I am swimming in circles trying my best to survive, but no one is putting food in the tank or changing the filter. I'm a fish! I can't very well change my own filter and jump out of the tank to get my own fish flakes! I think I'm starting to go belly up! I hate that I feel this way, because my faith has always been such a big part of who I am. We had a candle light service at church the other night. It was beautiful, but my heart wasn't in it. I felt like a fraud sitting there with my family... Singing Christmas songs and having The Lord's Supper. I started to sit out The Lord's Supper, because I don't feel like I am in the right place right now, but my grandfather is a deacon in the church and I just couldn't deal with an interrogation on top of how I am already feeling. I want desperately to believe that God will take care of us. I feel so hopeless without that faith that has always kept me strong. I am just so tired of having to fight tooth and nail for everything. I AM SO TIRED... and for the first time since I was five years old... I feel like God doesn't care about me or hear me when I pray. We tried to go look at Christmas lights to cheer me up. Didn't work. Hardly anyone put up lights this year. Its like Scrooge got loose and had a field day! The kids made out like bandits this year, and I am thankful my family was able to afford to give the kids the kind of Christmas they deserve. We couldn't. I want to live in the pajamas my mom got for me forever! If life has to be so hard I should at least get to wear comfortable clothes! (I think Hugh Heffner only gets away with it because he is rich though.) Well, I am going to try to go to sleep now. Merry Christmas again. I wish you all the hope, joy and faith that Christmas used to bring to my heart.

Tuesday, December 20, 2005

Manic Moment

Samantha is having surgery AGAIN tomorrow. She is having titanium tubes put in her ears and possibly having her adenoids removed. I am officially a nervous wreck! Most of her operations have been done in Fort Worth at Cook Children's Hospital. I TRUST THEM... THEY know children, and how to take care of them. Here on the other hand...... We had an incident about a year ago at our local hospital where one of the nurses in labor and delivery CUT OFF A NEWBORN BABY'S FINGER!!!!!!! Can you guess why I'm freaked out a bit? I am bouncing off the walls and know I have to be up early to take Sam to the hospital, but I just don't know if I can sleep. GRRRRR... manic depressive... ADD... bipolar... female... some of us just can't win! As if being a hormonal chick wasn't bad enough... I'm mildly psychotic too!!!! (No cracks about the mildly part!) Do you ever have more than one song running through your head at a time? I do. It probably wouldn't be so bad if the songs were at least from the same era. But, NO... I have to have Beach Boys in my head at the same time as Pearl Jam. My brain feels like its going to explode! OK... Going to try to get the voices to shut up and leave me alone so I can get a couple of hours sleep before I have to function again. I feel like I have five people in my head... All of them arguing over nothing... GOODNIGHT.

Friday, December 16, 2005

Me Posted by Picasa

The Death Flower... Or Why this season sucks...

You really have to hand it to the first guy that sold poisettas as a Christmas "flower". He was either a genius, or really high. Or, maybe both. I can see it now... Two guys sitting around in old Mexico... Drinking beer and smoking pot. "Hey man... You see those weeds in my garden over there?" said Juan. "Yah man... I got em too... And you pull um up and they grow right back... You can't get rid of them." said Carlos. "They are poison you know. You can't smoke them or eat them or they make you sick. I tried last year." said Juan. "Well," said Carlos, "at least they aren't so bad to look at. Kind of a pretty color of red." "Hey man, I think you are on to something there! Maybe we could call them 'flowers' and sell them!" exclaimed Juan. "Everyone in Mexico knows those are weeds, man. No one will buy weeds." Carlos stated. "Well, they are about the same color red as that suit the big fat guy those Americans talk so much about in winter wears. What if we wrap the roots in red foil and sprinkle some glitter on them? Americans are stupid man! They will buy ANYTHING! We can tell them its a traditional Mexican Christmas flower." said Juan. "Oh, man... That's great! I have red foil at my house... And my little sister has glitter... Lets take some across the border tonight! You know those guards are always playing poker on Tuesday nights... We could get by them easy!" said Carlos. And so Juan and Carlos were right. Americans will buy anything. I guess I must be one of the few people on Earth who are allergic to those stupid red weeds, but it makes the holiday season almost unbearable for me. They are EVERYWHERE!!!!! I can't go to the grocery store without feeling like I am going to pass out. I love Christmas. It is just very hard to get into the holiday spirit when you can't breathe for three straight months. And Juan and Carlos can now sit on the back porch of their mansion in old Mexico... Drinking beer and smoking pot... And laughing their butts off at how a bunch of dumb Americans solved their weed problem AND made them rich.

Monday, December 12, 2005

And the barf rolls on.....

I have had a head cold that I can not seem to kick for about two weeks now. We spent Friday in the ER, because our doctor fell off the face of the planet and was not to be found. Auron has a head cold too, nothing major. Samantha on the other hand ran a one hundred plus degree fever all weekend, and that was ON Motrin and Tyenol. I take her to the ER with her ear seeping yellow puss, and tell them it is her ear causing the problem... So what do they do?... They check everything except her ear, tell us they can find nothing wrong, and send us home. I hate Odessa. Medical care here sucks so bad. Samantha turns six years old tomorrow, and had I left it up to the doctors in this area she would have been dead three years ago. My mom came down with a really nasty virus and barfed almost non stop for twenty four hours, and now that she is almost over it my grandparents have come down with it. So Samantha may not even have healthy family at her little birthday party on Wednesday. We got her a fish tank and plan to let her pick out her own fish to go in it. Do you ever have one of those days where everything just jumps up and bites you in the butt at the same time? I have had one of those weeks. So I am sitting here trying to be in the Christmas spirit, and feeling lousy about having no options. We live next door to a bunch of drug addicts, and can not afford to move away from them. The weather keeps changing so much that it is anyone's guess as to when my body will function and when it wont. I want a new body for Christmas... One without Fibromyalgia, and one with smaller boobs. You may think its funny... But trust me on this.... big boobs suck. The kids are always kicking me in them, I nearly shut one in Sam's bedroom door the other day, I constantly bump them on things.... they just get in the way! Not to mention the back cramps from Hades! You people with itty bitty titties have no idea just how good you have things! OK... I think I may be done ranting for now... See you guys next time!

Friday, December 02, 2005

"Lucy, I'm home..."

Well, we made it to Fort Worth and back without any major incident. I am happy to see that my post to the listserv before I left town has resulted in extreme hardship for the immature and inconsiderate author of that most unfortunate blog. I hope it is a learning experience for her, as she OBVIOUSLY has quite a bit of growing up to do. Part of growing up involves taking responsibility for your actions and dealing with the consequences when you cross the line. While I doubt very seriously that the actions of the listserv will somehow make her grow some form of heart or compassion, I do hope she learns her lesson about picking on those she THINKS are less important to society than "Her All Knowing Highness". She really had NO IDEA what she was getting herself into picking on children with Angelman Syndrome, and now she wants to pout about having to deal with her actions. Grow up already! OK.... Now that that is off my chest... The trip went well. We got to meet with three fourths of another wonderful Angelman family who lives in the Fort Worth area, and had a nice visit over lunch. We even got a picture Christmas card from them with a photo of their BEAUTIFUL daughter, and her sweet handsome little brother. (Who by the way kept flashing me that wonderful Angel smile we are all so fond of!) Samantha's appointment had me a bit rattled, and I'm not quite sure I am comfortable with this doctor anymore. I am going to call after the holidays to see if we can get back in with her old doctor. He listened much better, and never treated me like I was an idiot. We had a nice visit with my mother in law and her, ummmm I guess I should call him her long term on and off boyfriend. It sounds so strange to say it like that, but I honestly don't have any idea what to call him. Anyway, we spent the night there and had a great visit. We got to see my brother in law while we were in town too. He seems to be doing better, but I'm not going to go into detail about his situation. We didn't get back home until one this morning and we are all still wiped out. Sam got to skip school today because I was afraid to send her sleep deprived. She has so many more seizures when she hasn't gotten enough sleep. All in all, things are good. Catch you guys next time!

Monday, November 28, 2005

Still Kicking...

Well... two nights down... The baby has slept in his own room for two nights now, and we are about to attempt a third. We leave for Fort Worth tomorrow morning. No big deal, just another neurology check up for Sam. I was browsing other people's blogs last night and ran across one that really upset me. Some MORON posing as a human being has a blog making fun of people with Angelman Syndrome! I say posing as a human because you have to have a beating heart and a brain to be classified as human, and this person obviously has neither. He even went so far as to make fun of the DEATH of a boy who had Angelman Syndrome. He described the child's death as "cartoonish". People like that piss me off SO BAD!!! I don't understand how someone can be so heartless to another family's pain and loss. Some people just shouldn't open their mouths about things they know nothing about! GGRRRRRR! Now I'm all wound up about it again!Oh well... I need to pack for our trip, and put the kids to bed now, so I will sign off and post again when we get back in town. Wish us luck!

Sunday, November 27, 2005

I am a terrible mother...

Or so my son seems to think. He is currently screaming his little head off in his baby bed in his room, because he kept pinching and hitting me to stay awake. I have decided it is time for him to learn to calm himself down without my intervention. He throws a major fit any time he doesn't get his way, and I just know if I don't nip it in the bud right now I will have hell to pay when he hits toddlerhood. I am so in awe at the difference between Auron and Samantha. I mean besides the obvious boy/girl stuff. Samantha never wanted to be held when she was this age. She wanted to be in the middle of the floor where she could see everything. Auron on the other hand, get seriously pissed the second his feet or butt touch anything other than Mommy or Daddy. Unless of course he is chasing Grace (our cat). He is getting faster and she is getting more and more spooked from running away from him. I don't worry too much about Grace biting the kids, but I worry more everyday for Grace because BOTH kids bodyslam/bite/pull her tail/chase her.... Well, you get the point. Quite frankly Grace was psychotic enough before the kids got so mobile, and now she is taking her frustration out on my living room furniture, and it was shabby before her cuisanart trip. Now its just plain trashy looking. I think declawing might be in order. I just cant decide if I should declaw the cat or the kids. HMMMM.... He stopped crying for almost a full five minutes before he restarted, maybe he is winding down and will pass out soon. Samantha gave herself a bloody lip today. She has been chewing her fingers so bad we have kept socks on her hands for the last week to try and reduce the trauma to her already chapped hands, but her poor lips are so dry and chapped now. She rubs the chapstick off chewing on the socks on her hands. I'm afraid its a lose lose situation. I just hope she doesn't end up with gangrene. That would be more than we could handle I think. Then again, we have already handled nine operations. We have almost lost Sam five times, four from seizures and one from infection, and we almost lost Auron once when he was two weeks old. So I guess we can handle just about anything life throws at us. Well the baby fell asleep finally. And the kicker... He is sleeping sitting straight up in his bed. LOL! How funny is that?! Only one of my kids could pull that off at eight months old.... Well, off to bed now... I hope...

Saturday, November 26, 2005

Its 3AM.... AGAIN...

So here I sit at three in the morning again, baby asleep in my arms... at least until I attempt to doze off sitting straight up in the chair... and then it starts... the crying and the squirming and the hitting and the cussing... OK... so the last one is me, not him. And God forbid I try to go lay down in my bed with the baby in tow, or worse, try to put him in his own bed! You would think I was killing the kid! I do not remember the last time I had more than thirty minutes of uninterrupted sleep. Highschool maybe? But no... I didn't really sleep then either. The major difference is that back then I got to choose when I stayed awake and when I went to sleep. NO LONGER. My life has been invaded by two tiny terrorists. They take shifts trying to drive me over the edge. Sometimes they gang up on me. I have informed my husband that I either need a vacation away from the kids for AT LEAST two full days, or he needs to build me my own little rubber room someplace in the house. I remember once upon a time... when I still had a life that was mine... and money... and friends... and some semblance of sanity... and a waistline... but I try not to dwell. Mr. Sandman, knock my butt out!!! And please get both kids while your at it!!! I should only need like two weeks solid of sleep to catch up... That's not too much to ask is it? Hello?...... OH WELL... you can't blame a girl for trying.