Thursday, July 30, 2009

Everything has it's time...

There comes a time when you need to stop thinking about other people and start thinking about yourself. For me I think that time is now. I have always put others before myself and you would think I would be a happier person for it. But that is not so. I think I have done for others to the detriment of myself. So I am going to try another route. I am going to do for me and if it works in MY plan, schedule then I will see if I can fit them in. Perhaps doing for myself more will make me a happier person.

Friday, July 24, 2009

It's been...

One of those days, no one of those weeks....

Thursday, July 23, 2009


Big news on the twilight bus blog. Go see....
My heart is still racing!!

Wednesday, July 15, 2009 and Party Favors!

The title says it all. I got Drugs today! Woo hoo. I have a full arsenal on hand for the killer headaches and also some "happy drugs" Well I guess we will see how "happy" they are in a few weeks.
Cleaning... a never ending job. But I downloaded the Twilight series so I can listen to my books while I clean. Tomorrow morning is cleaning the boys room. I have sooooo many clothes to put away! Oh yea and about 10 more loads of laundry!
Party Favors. Well water bottles.
Yep been working on making the water bottle labels for my cousin's baby shower. I cannot wait for everyone to see them! I was up until 2 am the other night creating them then had to go to kinkos to print and laminate then. Now I have to cut them all and put them all on the water bottles.
All 60 of them!
I really hope she likes them! I also worked on her diaper cake and 2 other presents for baby girl that I cannot show yet but I am sooo proud of them! OK well CJ and M are home and I am gonna go to bed. Soli gets a new Mic-key tomorrow so it may be a LONG day...

Monday, July 13, 2009

Moving rooms and Making room...

Yep you read that right. I have been moving rooms around and making room. For Lily and Meghan. As of the end of next week Meg and Lily will be living with us. I am kinda excited. One to have Lily here (yes I already shopped for many matching outfits for her and Soli!) but to also have Meghan here. Another person to talk to and have around.

Tom is leaving on the 18th for AT and will be gone till Aug 2. I am going to be calling my Dr tomorrow. I think I want to get back on the Wellbutrin, I am just not myself. I know the migraine I have had since last night does not help (I just cannot get rid of it!) I nearly lost it today and I just feel sad all the time. Hopefully the Wellbutrin will help. I hate the person I have become.

I am still waiting for help with Respite for Brianna and the nurse to help with Soli though I am nervous about the nurse for Soli. I guess I just feel that I should do everything for her. She is doing great with Physical therapy and her therapist is the best! I think she will be rolling from her back to her tummy soon. She is trying really hard! She moves herself around her bed. She is 7 months old now. I cannot believe she is closer to one than to a newborn! God I love them all soo much and I hate that I lose my temper so easily. I don't hit but I do yell. ALOT. I do not want them to grow up like I did. Feeling like they were just in the way or mistakes.

I was told by a "family friend" that I was not wanted by my parents and my family is so screwed up! Really I do not know many of my brothers or sisters. I do not fit in with my Father's children. In fact I think I am more a pain in the ass for them than anything. I really know nothing about my father and his side of the family. I am the outcast from that side and I am not exactly sure why. I know they do not care for my mom but like I said the wheres and whys are a mystery to me.

Only one sister kept in touch when I was growing up and I am not invited to family events. In fact the first time one of my brothers talked to me in 20 some odd years was to call to tell me I needed to sign a form about our father's residuals and money. Honestly I haven't had the time or money to get the form signed but I think it may go deeper than that mentally. I will go and get the form signed now that I finally got some money and send it to them. I am going to send a letter that they can have everything from this day on. It is too depressing so I would rather give everything up then they do not have to wait for me again.

Kassiah told me the other day that Mac told her that she was a mistake and wanted to know if it was true. I am upset that Mac would say something like that to her but even more upset that anyone would think it. I feel like I have failed them. Apparently my best is not good enough and I don't know how to fix it. How do I show them how much I really do love them? I am not good enough to be their mom. It is not fair to them. Just because I am screwed up doesn't mean they should have to suffer. I really hope that by asking for the wellbutrin it will help me become a better person. I was really mean today and I am so upset with myself.

Well this entry became a whole lot more than I intended it to be but I think I needed to get it out. I am going to make sure tomorrow is a better day and if anyone is actually reading this, thanks for letting me Ramble!

Tuesday, July 7, 2009

My encounter of the raving kind...

Had to bring this entry over from the bus blog! ENJOY!
OK I usually do not write about personal stories on this blog but since it had to do with the bus I figured Why not..

We were out and about in the bus today. I went to Toys R Us to exchange something. Well some of the kids did not want to go in (as I was only running in to the counter and back) and having 2 teenagers in the bus, I decided to let them stay in the bus and read their books and listen to the music.
After about 4/5 minutes I came back out (now remember I am in the spot closest to the entrance literally 20 feet away) and I come out and am immediately attacked by some guy ranting and raving at me. He literally jumped on me as he asked why I would leave the kids in the bus. I informed him that I had 2 teens in the bus and it was perfectly legal and safe to allow them to watch the few little ones for 5 minutes.
His minion (wife or girlfriend I think) starts ranting about how she gives to the "foundation/organization" and comes out of the store to see kids in the bus and how appalled she is. I informed her that I was not an "organization" and I had no clue what she was talking about and she starts yelling at me telling me not to lie to her about being in the "organization". I politely say again that I have no clue what she is talking about, I have gotten no money from anyone. The man says that yes I am an "organization" and she gives money to them. Once again I told him I did not know what he was talking about that the bus was a privately owned vehicle. He asked me what the web address is and I told him a link to our blog. He says "Oh and what will I find on this site?" I proudly told him lots of pictures of an old school bus!
I climbed into the bus as the raving guy says the police are on their way. I told him "well my kids are hungry and I am going to go feed them lunch feel free to send the police over to Burger King if you want." I close my door make sure kids are belted in and back out of my spot with the man yelling at the lady to "follow her!"
Needless to say half way to BK the police pull the bus over and 2 officers (from different cars) come to the bus door. I opened the door and welcomed the officers aboard the bus. They came in and asked me if there was a problem and I let them know what went on. They of course ran my licence to make sure I was not some Kidnapping psycho or something , Nope clean as a whistle not so much as a traffic ticket. They came back and I spent the next 5-10 minutes telling them the story of the bus. After nearly picking them up off the ground as they asked if all the kids were mine and informing them that yes they were, they checked out the bus and said it was awesome and for us to have a good day. I closed the bus doors and continued to BK to feed the now starving children.
I do however wish I had waited in the parking lot for the police so they lady and guy could see that I did nothing wrong and they had their panties in a bunch for nothing. Oh well.
Like I said before, Life is never dull around here, especially when you drive a renovated school bus full of kids!
Maybe this is what she thought I was.....
The Twilight Benefit Foundation is a "501(c)3" charitable organization, existing to support and further social, philanthropic and humanitarian efforts to give something back... to the community and to our fellow man.Our focus is on social needs and concerns, the preservation of our environment, and the continuing research for the elimination of catastrophic disease. We strive with uncompromising passion to leave this world better than we found it.

I guess leaving the kids in the bus (thus avoiding several temper tantrums and many Mommy buy me this), did not fit into their idea of striving to leave the world better than they found it, though I can guarantee that Toys R us is better for it!

Friday, July 3, 2009

A SN Parents Bill Of Rights

Written by Ellen S.
Ellen can be found at To The Max.
A Bill of Rights For Parents of Kids With Special Needs
We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.
* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder "What if…" every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/ Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people's ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child
We have a right to go through the grieving process and realize we may never quite be "over it."
* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don't have to look into another child's eyes and answer the question, "What's wrong with him?"
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children's challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be "special" but they can still be a royal pain in the ass.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child's disabilities.
* We have a right to talk about how great our kids are when people don't get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they're infants, preschoolers and elementary school age, but when they're in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.
For a printable copy, e-mail LoveThatMax@