Friday, November 20, 2009

I knew they were out there.



So I quit. Yes, I stopped writing. It was just too much, mainly because what I want to say, what is on my mind, in my mind, consuming my life, my every waking moment, is so insanely difficult and personal to my family, that I just can't do it. I know that I cannot get on here and pretend everything is ok. Nor can I get on here and try to find some part of my day not affected by the BULLSHIT that I can write about. Because it's superficial. Yet I cannot write about what is real, as my blog is not anonymous. I have never tried to be anonymous. My blog is full of pictures, first and last names, probably even locations. I have never lived a life that I would need to be anonymous about. I am who I am, and if you don't like it, GO AWAY! But this, this is not mine to share. This was not my doing, not anything that I chose, and not something that I am willing to present to the world. And I am so grateful that I didn't.

Kyley told me today that while in computer class, they had "free-time", so her and her friend read my blog. Yes people, it happened! Just search my name, search any of my kids names. Because of this, I have always been open with my kids that I have a blog, though they have never shown any interest in reading it. It happened! And I had the insight to NOT share. Even had I not shared the details, the pain would have seeped through, because I thought about it. I thought that maybe if I just shared my pain, my feelings, it would be ok. But I'm glad I didn't.

Maybe I should go anonymous? Maybe if I just give it a little more time, I can get back to writing something that doesn't involve heartache. Either way, I love you kids! I will never do anything to hurt you or embarass you. Ky, I'm glad you came here and found love and humor.

Tuesday, November 3, 2009

Pride



Josh: Mommy, I'm so proud of you!
Me: You are? Thanks.
Josh: You're welcome.
Me: Why are you proud of me, Josh?
Josh: Because you always take us to school.

Yes people, I am appreciated around here for my greatness.

Monday, November 2, 2009

The New Cast of Characters

I am Heidi, aka Doodlebelle. I grew up in the beautiful town of Burlington, VT. I now reside in a rural area outside of Charlotte, NC. I have custody of my three step-children, as well as my four biological children. I am trying to navigate this world, keep my sanity, and laugh everyday while parenting 7 kids. Sometimes I do a good job of it. I enjoy reading, dancing, singing loudly in the car, losing my shit, and procrastination.


This is Brittney aka Weirdo. She is the twin of Brooke, (She is the older twin.) She enjoys her horse, reading, and being moody. She also enjoys thrashing around wildly while dancing, and completely ingoring me when I ask her a question.


This is Brooke, aka Miss Social. She is the twin of Brittney. She enjoys soccer, her friends, her phone, and her computer. She also enjoys dancing in the living room while watching her reflection in the TV, and arguing with her siblings. If ever she goes missing, you can find her in the bathroom, straightening her hair or taking pictures of herself for myspace.


This is Kyley, aka The Genius. She is super intelligent, and extremely weird. She enjoys her horse, her music, reading, and watching TV. She also enjoys sighing heavily and stomping when asked to do anything.


This is Andrew, aka Super Recovery Boy. He lives with brain cancer. He is funny and amazingly resilient. He enjoys playstation, computer games, drawing, talking back, and trying to get out of chores and school-work.


This is Rainia, aka Lil Mama. She is bubbly, fun and hyperactive. She enjoys competitive cheerleading, writing, being a princess, eating, telling everyone else what to do, and bossing around whoever she can.


This is Jake, aka Rotten. He is the twin of Joshua. He is funny, sarcastic, and entertaining. He enjoys action figures, bugs, dancing, making people laugh, being the center of attention, trying to annoy people, and ruling this family.


This Josh, aka Sweetness. He is the twin of Jacob, the youngest in the family. He is loving, sweet, and affectionate. He enjoys Computer games, Playstation, sports, singing, Showering people with hugs, and screaming at the top of his lungs when he doesn't get his way.


To contact me: iamdoodlebelle@gmail.com

I have custody of 7 kids!

Wow, I have not posted in a long time! Things have changed. I don't want to get into the details, but I will say that due to circumstances beyond my control, Rick and I have seperated. I know, I know, the shortest marraige in history. Yes, all my marraige fears came true. But enough about that, the main thing, is that I now have custody of his kids, as well as my own! SEVEN children, by myself! Wow it has been a crazy few months.

Recent happenings:

Brittney and Kyley attended the Jack Monroe Beach Ride in Myrtle Beach. Pics to come soon.

Wednesday, July 1, 2009

Feeling Guilty



You might be a bad mommy if...

You hide in your bedroom with your laptop while they take over the house.

You go out for dinner with your husband and bring home pizza.

You get much more excited watching your dog play than your kids.

You would much rather take your kids to the park that your dog can go to with the lake than the one that has the cool play area.

...So you visit that one much more often.

If there is no blood involved than you dont want to hear it.

Your kids do their own laundry....If the're over the age of 10.

You like to call the brown spot in your son's hazel eye a "shit spot".

You have told your daughter that her gift is "being social"

You have had milkshakes and cookies...for dinner.

You laugh at the way your kid talks.

...Even though he's in speech lessons.

Your kids laugh hysterically when they fart.

Walmart is their favorite store.

...Unless the're 6. Then they love the dollar store.

And finally, you might be a bad mommy if...

Your kids think that twizzlers are made out of the dolphins caught in tuna nets.

Wednesday, June 24, 2009

Crappy crappy crap crap



Dear Medicaid,

I know that you don't care that we are trying to fix our credit. I know you don't care that our business went south when Rick spent THREE MONTHS at Andrew's bedside. I know you don't care that this economy is very rough right now for ANY small business. You don't care that we have NINE people in a THREE-BEDROOM double-wide. All you care about is that I missed my review. You don't care that most people get to come to their review with their last two paychecks, and a social security card, while we need SIX MONTHS of financial statements because we are self-employed. You don't care that the work involved in filling out your application and getting all the financial paperwork involved for me is over 40 hours worth of work. You don't care that our tax guy avoided my phone calls. You don't care that I was trying to plan a wedding. You don't care that Rick is the executer of his mother's estate, which meant that I had to do endless hours of paperwork or he would be held IN CONTEMPT OF COURT. You don't care that everyday of raising SEVEN kids leaves me no time to even clean my house let alone try to print off the THOUSANDS of receipts that you want. You don't care that it is ILLEGAL for me to tell you our customer's information. I don't mind telling you how much they pay for their cars, but I REFUSE to give you their names. It is not right!

So thanks, thank-you for only going back to March in paying our bills. Even though I showed you the thousands of dollars in bills from Feb. when Andrew had his last MRI. Thanks alot. And now that will go on Rick's credit, because there is no way we can pay it. And now we will probably not be buying a house this year. Yes medicaid, i am blaming YOU! And I know that I procrastinated, but my God, life is hard, and I DON'T LIKE TO GO TO YOUR OFFICE! You treat me like a crack-whore, and the people in the waiting room stare at me, and I HATE YOU!!!

Sincerely,

Trailor Trash for another year

PS- Everything on my credit is medical, So I blame YOU for that last real-estate agent telling me that they couldn't even show me that house! F-You Medicaid! I wanted to see it. Even if there was no way I could even put in an offer, I just wanted to look at it, because sometimes I avoid my reality by PRETENDING we are actually house-hunting. And it is FUN! So screw you medicaid, screw you.

Tuesday, June 23, 2009

Holy Smokes Batman!



Our house almost caught on fire last night! And I don't know what is going on here, because I have lived my whole life without any fire issues, and now I have 2 almost catastrophes in the time of one year. It was actually almost exactly a year ago that this happened. And now, This:




Okay, now that I am looking at it, I can see how the pictures are not very clear. Let me explain. In our bathroom, when the door is open all the way, there is a lovely perfectly round hole where the doorknob busted through the wall. Well, there used to be a perfectly round hole, until last night. Now it looks like those lovely pictures. Why? Because the boys were trying to kill the spiders. And we DON'T even have a spider problem! How were they trying to kill the spiders? Well, Jake was the lighter, and Josh was the holder. Josh held the toilet paper while Jake lighted it, and then Josh threw it INTO THE DOORKNOB HOLE!!! Holy Smokes Batman!!!

There was smoke billowing out of the hole, and when we ran in, Rick happened to be holding a beer in his hand, so he dumps the beer into the hole. And it is STILL smoking! So I grab this metal bread pan, because I bake bread so much that the breadpan is located in the bathroom, holding lipstick. I dump out the lipstick, fill the breadpan up with water, and pour it into the hole, and all down the wall, and all over the floor. Repeatedly! Because it WOULDN'T STOP SMOKING! Kyley runs in with a gravy boat (from the kitchen, although that thing would probably be good for holding Q-Tips) so I start using it, because it fits into the hole better. Now Rick runs in with the fire extinguisher from under the kitchen sink, and Oh Shit! It doesn't work! And somehow, now Rick has a pair of pliers, and is ripping the sheetrock with the pliers. So I run into the kitchen, and run back in with a large knife, and now he is sawing away at the sheetrock. I am continuing to pour water. And suddenly the power goes out! "OH CRAP!!! I think I just cut through an electrical line!!!" OMG! You should be dead! Sawing through an electrical line with a large metal knife, while standing in water.

He runs back in with a flashlight, because we have to be sure that the fire is out, and it still looks like smoke, and he is still sawing, and I am afraid to dump any more water in there, because the electrical line is probably exposed, but he reassures me that the breaker is completely off, so I am dumping, and he is sawing. We stop. We take a little break to reevaluate the situation, there in the dark, with the flashlight, and it seems that there is no more smoke. A huge sigh of relief. We examine the electical line with the flashlight, and it actually looks fine. Rick heads to the breaker box, telling me to yell if I see any sparks. I hold my breath, and now the lights are on, and nothing is sparking. OH THANK GOD! There is no smoke coming from the hole, the fire is out, and we still have a house.

Coming Soon: We disclipline two 6-yr-old boys who almost burned our house down

Saturday, June 20, 2009

I'm Back!



Hey Guys-

I am back, and feel like I should apologize for not writing for so long. I don't really know why I feel like I need to apologize for not writing on my personal blog, but I do. So here I am. Sorry.

So we are married! We are now a legal family, and it feels great. The kids really seem to be affected by it, which is so surprising, because it will be 4 years in August that we have been living together. The kids are saying stuff like "You're my dad now" (like he wasn't before). Interesting.

The kids are all doing well, on summer vacation, and in good health.

The wedding was great, with some interesting stories that I may get to soon. The kids were all "junior brides" and "junior grooms" complete with their own "junior maid-of-honors" and even a "junior best-man" They were so excited to be able to bring their best friends on such a wonderful vacation, to such a beautiful place.

Our beautiful wedding chapel in the mountains


A view of the incredible cabins we stayed in


The Wedding Party



My Guys



My Gals


Husband and Wife at last!




And some more of my favorites I thought I'd throw in:
Me and Rick

Brooke and Dad

Bride

Our Sand Ceremony Container


In addition to doing a sand ceremony to include our children, we also said vows to them and gave them rings. It was beautiful!

Friday, March 6, 2009

Conversations with Josh



Brooke and I went on a shopping trip. We were not home in time for dinner, and stopped to get fast-food at this awesome place, which is my downfall:



She didn't finish her chicken strips, and had put them in the fridge, saying "Rainia can have those for her after school snack tomorrow." So tomorrow came, and was actually yesterday. Is that confusing? Anyway, I pick up elementary school first, which is Rainia, Jake and Josh.

Rainia: What can I eat when I get home?

The girl has an obsession with food. she cannot get enough. I think that because of her extremely hyper-nature, and metabolism, she really is always hungry. She burns it as soon as she eats it.

Me: Actually, Brooke saved her dinner from last night for you. Wasn't that nice?

Rainia: Yay! What is it?

Me: Chicken strips.

Josh: But I wuv chicken stwips too. Did she give me some?

Me: Sorry bud. You're going to have to eat normal snack.

Josh: Why did she give it to Wainia?

Rainia: Everyone knows I am the eater in this family.

Josh: (Is very upset, his face turns red, and he yells) "You awe NOT my leader!"



And on the same trip, the highlight of my day:

They are having a book fair. We always buy books at the school book fairs, and they sent home a catalogue for the kids to look through.



Rainia: Look at the book I want Mommy.



(Rainia's other obsession)

Josh: And wook at the book I want Mommy, Andwew weads these books.



Josh: It's called Diawea of a Wimpy Kid. It's about a kid that poops all the time!

Monday, March 2, 2009

Rainia's 15 minutes



Oh. My. God. I just saw my daughter on E!news. I have to find it on the internet. The Jonas Brothers Theater Invasion. Wow.

Sunday, March 1, 2009

I won the coolest mom of the year award



Now I really AM mother of the year. Well, at least according to Rainia. This is us yesterday:



Yeah, right there on the right hand side, Rainia and Jazmynn (her best friend), Sajar (Jazzy's step-mom), and myself.

And this is why:



And this picture is the one they actually used on the front page of The Charlotte Observer:



In this picture, we are closer to the left hand side, you can see Rainia's little head kind of poking out.

Yes, The Jonas Brother's made a secret trip to Charlotte, and we were there. They actually went into the 3:00 showing of their 3-D movie, and we went to the 1:00 showing. They were only in the theater for a minute though, and when they came out, they were mobbed by screaming, crying girls. Rainia was one of them. She cried. A lot. Here she was, less than 7 feet from the boys who's posters adorn her walls. This was a HUGE deal. And I have to say it was a complete stroke of good luck, as the movie wasn't playing in little town. It was playing in a bunch of theaters in Charlotte, and we happened to be at the right one, at the right time. So now Rainia's little life is complete!

eta: All photos courtesy of The Charlotte Observer

Thursday, February 26, 2009

Just saying



Leesa wrote:
Getting married is scary business. But there are scarier things . . . yeah, I know there are. Does this make you feel better? How about going off to Iraq instead of getting married? Yeah, getting married seems to be okay, after all.

HHhhhhmmmm....Did you read any of my blog?

1st of all, no, the thought of going to Iraq does not make me feel better. What kind of question is that? Secondly, had you clicked on any other pages in my blog, you would know that I experience all levels of fear on a regular basis. Your comment implies that fear is only valid if the cause of the fear is a calamity. I have experienced these, my whole life. Fear is fear. It provokes the same physical and emotional symptoms whether the root of the fear is marriage or the knowledge that my stepson has a 50% chance of being alive at 18.

On the day that I wrote that post, my fear was based on entering myself and my children into a lifelong commitment, not only legal, but as a promise to God, that only 50% of couples succeed at. That is a good fear. Healthy. And I have a right to be afraid. I have seen first hand the devastation that divorce can have on the soul, the very being of those who have to experience it. And I thank God that my life is in a place that I am writing about that fear right now. Not about losing my house, as so many people are facing, or the probable loss of a child, as I have had to face in my past. But, it's FEAR, and it's MINE. Don't come to MY blog and leave a condescending comment, as if my fear is not good enough.

Wednesday, February 25, 2009

Guess What? I AM alive!

My computer is down, and work is crazier right now than it has ever been. Ever. But, I'm alive. I am so blessed with my bloggy community. Thank-you EVERYBODY who was worried about me. I love you guys. I will hopefully get my computer up and running this week.

Tuesday, February 10, 2009

Spankings and Incest (I am not great at this parenting thing)



Jake: Can I spank Rainia?

Me: No.

Jake: Can I spank Josh then?

Me: No.

Jake: When can I spank someone?

Me: Well, you have to wait until you have kids. But first you have to go to college. And then you have to get a really good job and make lots of money. Then you can get a wife. And THEN you can have a kid. Then you can spank it whenever you want to.

Jake: Why do I have to have money to get a wife.

Me: Well, because honey, that's just the way it is. You have to have money, and then you can have a really great wife. What kind of wife do you want?

Jake: Britney.

Me: You want a wife that looks like Britney?

Jake: No. I want Britney.

Me: You can't marry your sister.

Jake: Is it against the law?

Hhhmmmm....You really can't blame the boy, she's gorgeous:

Monday, February 9, 2009

Saturday, February 7, 2009

Paralyzed with Fear



I have a strange, unrelentless, incredibly strong fear of marriage.

I am 31 years old, I've never been married.

I have been proposed to by 4 people in my life.

I said no 3 times.

I am getting married in 3 months.

I woke up crying this morning about it.

I'm petrified.

Thursday, February 5, 2009

Maw-Maw

Conversation in the car today after school=

Josh: MawMaw an me have a secwet an I cant tell NO ONE!

Jake: MawMaw and me have a secret too. I can't tell no one too.

Josh: I will tell you my secwet if you tell me yours.

Jake: OK.

Josh: You can't say you don't bewieve me, cuz it's twue.

Jake: OK.

Josh: MawMaw said that I'm Abbie's special guy. An when I'm at her house I can take care of Abbie.

Jake: No she didn't.

Josh: Hey! You Lied! You said you was goin ta beweive me.

Jake: That could'nt be YOUR secret, cause that's MY secret! MawMaw said that Abbie loves me so much. And I can take care of Abbie when I'm at her house!



Mom,

The game is up. How long did those secrets last? Did you REALLY think that they wouldn't find out? And why doesn't anyone want to take care of the dogs that we have in OUR house? Is your dog that much better than ours?



Conversation at dinner tonight after 5 out of our 7 kids have eaten seconds, and Rick has gotten up to eat the last bit out of the pot with the serving spoon.


Kyley: Can I bring the rest of mine over to Grandma's house? When I told her what we were having she asked if she could have some.

Me: Why didn't you say something? We could have fixed her a plate!

Kyley: Well, she said to wait and see if there was any left over.

Me: Ky! We had enough to fix her a plate!

Kyley: Well she said to go ahead and have seconds and whatever.

Me: Josh! Jake! Stop eating! (Scraping everyone's left-over food into a bowl) Oh My God. I can't even believe I'm doing this.

Rick: We feed MawMaw our scraps?



Dear Mom,

I shouldn't have done that. Sorry. Did you like your dinner?

Tuesday, February 3, 2009

The other awesome news



What a night! Not only did we get amazing news today, but when I got home, I was catching up on my blogs, and I can't even believe this, I WON SOMETHING! GreyGillFish, who takes the most amazing pictures ever, had a contest. It was a raffle, and all I had to do to enter was to comment. I don't actually know what I won, but oh my god, she said something would arrive on my doorstep, and I bet it's this:



Actually, she might have a hard time dropping those off at the post office for me, so I probably won this:



HHHhhhmmmm...I don't know what I won, but the best gifts were the pictures of her beautiful daughter holding up my name as the winner. Seriously, you have to check these pictures out. They are too cute.

MRI results

We got back late this evening. I know you are dying to know, so I wont keep you waiting. The tumor looks the same! That is fantastic news. Also, that is one Drs. opinion. The other Dr. said that he thought it looks like it went DOWN a small amount. We are ecstatic, and counting all of our blessings. I know that when we switched our medical team from Charlotte to Duke, they told us that radiation would NOT have been their choice of treatment. We know what the side-effects are. But, thank God, the stuff is working!!! I hate it that he has known and unknown long-term damage from the radiation, but Holy crap, it's working! I guess we are lucky, as far as statistics go. I know that if we had started our treatment at Duke, radiation would have been a last-resort, it would have come after chemo. I don't know why the Charlotte Drs. pushed for radiation BEFORE chemo, but as of right now, today, I am grateful that they did. (That is said with full some not enough understanding of the long-term effects that might pop up later.)

One of the Drs. even said something about not needing another MRI for a year. Of-course, being a worry-wort, I said I prefer 6 months, and the other Dr. agreed. So six months it is. We wont go back until August, unless Andrew's balance, coordination, etc. gets worse.

Thank-you so much for keeping us in your prayers, they are working!

Monday, February 2, 2009

I'm scared.



Pray for us, or cross your fingers. We are headed up to Duke. Andrew has another MRI tomorrow. Let's pray that this isn't the one where they tell us he needs to start chemo. I am definately going with them, because I don't want this to happen.

Sunday, February 1, 2009

Um, You're 6. Why can't you dress yourself?

We went to a birthday party today at an indoor playplace. The kind with the human hamster tubes. You have to take your shoes off in the hamster tubes.



Me: Josh, go find your other sock in the playplace.

Josh: It's not in da pway pwace.

Me: Well, where is it then?

Josh: I onwy wore one sock today!

At least when they leave the house without underwear, noone knows it. Well, I take that back. Sometimes others do know when they don't wear underwear.



Dear Jacob,

You are gorgeous. Incredibly good looking. You make my heart fill with joy when i look at your face.



Do you think I could have my eyelashes back? Oh? Mine never looked like that? You are a BOY. You don't need them. Can I just have them?

Saturday, January 31, 2009

I need YOUR help!

OK guys, We need help!

There are two bills in Congress right now...

HR 653 - To amend title IV of the Public Health Service Act to create
a National Childhood Brain Tumor Prevention Network to provide grants
and coordinate research with respect to the causes of and risk factors
associated with childhood brain tumors, and for other purposes.

and

S 305 - A bill to amend title IV of the Public Health Service Act to
create a National Childhood Brain Tumor Prevention Network to provide
grants and coordinate research with respect to the causes of and risk
factors associated with childhood brain tumors, and for other
purposes.

Yes, you read that right, they are completely identical. The bills go hand in hand, but must be passed by the senate and house seperately before thay can be passed into law.

Lets get this done!

So what do you need to do?

#1. Contact your Congressional Representative and Senator in Washington D.C., representing your district, and ask them to support these bills and vote in favor of them.

You will need you full 9-digit zipcode, which can be found here

To find out who your Congressional House of Representatives Member and Senator are, visit this site.


#2. Contact your State Representative and State Senator (at your state Capitol) and ask them to file or support a joint resolution urging Congress to pass these bills. Remeber, you are asking for a "joint resolution".

OK, to find out who this is will be a little trickier. You will have to google "your state" general assembly. You may see a button that says "Who represents me?"

I have done the work for the top-five states that visit this blog. They are:

North Carolina

Vermont

Florida

New Jersey

Georgia

The best way to contact them is through e-mail. PLEASE, pretty please, and cherries on top, take a couple of minutes out of your day to do this.


Go ahead and take a look at the bills that we NEED to get passed:

House Bill 653

Senate Bill 305


#3. Ask your friends, family, helper network, medical professionals, church, community, school, teachers, and anyone else you can think of to do the same. You can copy and Paste this, and send it to everyone in your e-mail address books. The more noise, the better. In legislative affairs, it is very true that the squeaky wheel gets the grease, so to speak.

#4. If Congress passes these bills, and if your state passes a joint resolution, make sure to thank your Representatives and Senators.

To track it, you can go here

At the end of this post, I am going to include a couple of sample letters, the first is for your Congressional representatives in Washington, and the second is for your State representatives. They are just a little different. YOU DO NOT NEED TO USE THESE. But, you can if you want to, just make sure to add personal details.

Please customize your letter. Form letters that all say the same thing are extremely ineffective. But if you follow a general format, include personal testimony and clinical statistics, and “ask” for a specific action, your e-mail or faxed letter will be VERY, VERY impactful.

Hey YOU! Reading this right now, I am asking YOU to take action.





LETTER TO CONGRESSIONAL REPRESENTATIVE AND SENATOR
Your Name
Your Address
City, State, Zip

Today’s Date

Representative/Senator Jones
VIA E-MAIL/FAX (as applicable)

Dear Representative __________(last name) or
Dear Senator ________________(last name):

I am writing today to urge you to co-sign and pass companion bills HR 653 and S 305, which creates the “National Childhood Brain Tumor Prevention Network Act of 2009.” This vital legislation amends a portion of the Public Health Service Act and provides grants and coordinates research with respect to the causes and risk factors associated with childhood brain tumors.

As the proposed legislation cites, tumors kill more children than any other disease, and brain tumors are the second most common type of cancer in children. Childhood brain tumors are the leading cause of death from solid tumors in children. There are newly recognized types of brain tumors, as defined by the World Health Organization, and many of these newly recognized types occur in children. The causes of the overwhelming majority of childhood brain tumors are unknown. Brain tumors have substantial costs for affected children, the families of such children, and society. Childhood brain tumors cause significant morbidity and the loss of many years of potential life. The prognosis for most childhood brain tumors is dismal and survivors face lasting adverse health effects. Because of the relatively low overall incidence of childhood brain tumors, such tumors frequently do not receive sufficient attention and research funding.

No single institution has a sufficient number of patients to independently conduct research that will adequately address the causes of childhood brain tumors. There has been no comprehensive study analyzing all relevant clinical, biological, and epidemiological aspects of childhood brain tumors to identify potential risk factors and determine the cause of such tumors. Existing national cooperative clinical oncology groups primarily investigate treatment options and prognosis and do not typically examine the origins of childhood brain tumors or the risk factors associated with such tumors. A significant majority of children with brain tumors are first treated by neurosurgeons and not by oncologists typically involved in such groups.

[INSERT HERE, IN YOUR OWN WORDS, YOUR PERSONAL EXPERIENCE WITH A PEDIATRIC BRAIN TUMOR.]

Thank you for your leadership in the House (or Senate as applicable) and your consideration of this request. I would appreciate it if you would advise me of your actions on this extremely important and groundbreaking issue. My e-mail address is _________________. I look forward to hearing from you soon. (include your phone number if you wish.)

Sincerely,

your name
your address

LETTER TO STATE REPRESENTATIVE AND SENATOR

Your Name
Your Address
City, State, Zip

Today’s Date

Representative/Senator Jones
VIA E-MAIL/FAX (as applicable)

Dear Representative __________(last name) or
Dear Senator ________________(last name):

I am writing today to urge you to sponsor a joint resolution in the state assembly urging Congress to pass HR 653 and S 305, which creates the “National Childhood Brain Tumor Prevention Network Act of 2009.” This vital legislation amends a portion of the Public Health Service Act and provides grants and coordinates research with respect to the causes and risk factors associated with childhood brain tumors.

As the proposed legislation cites, tumors kill more children than any other disease, and brain tumors are the second most common type of cancer in children. Childhood brain tumors are the leading cause of death from solid tumors in children. There are newly recognized types of brain tumors, as defined by the World Health Organization, and many of these newly recognized types occur in children. The causes of the overwhelming majority of childhood brain tumors are unknown. Brain tumors have substantial costs for affected children, the families of such children, and society. Childhood brain tumors cause significant morbidity and the loss of many years of potential life. The prognosis for most childhood brain tumors is dismal and survivors face lasting adverse health effects. Because of the relatively low overall incidence of childhood brain tumors, such tumors frequently do not receive sufficient attention and research funding.

No single institution has a sufficient number of patients to independently conduct research that will adequately address the causes of childhood brain tumors. There has been no comprehensive study analyzing all relevant clinical, biological, and epidemiological aspects of childhood brain tumors to identify potential risk factors and determine the cause of such tumors. Existing national cooperative clinical oncology groups primarily investigate treatment options and prognosis and do not typically examine the origins of childhood brain tumors or the risk factors associated with such tumors. A significant majority of children with brain tumors are first treated by neurosurgeons and not by oncologists typically involved in such groups.

[INSERT HERE, IN YOUR OWN WORDS, YOUR PERSONAL EXPERIENCE WITH A PEDIATRIC BRAIN TUMOR.]

Thank you for your leadership in the House (or Senate as applicable) and your consideration of this request. I would appreciate it if you would advise me of your actions on this extremely important and groundbreaking issue. My e-mail address is _________________. I look forward to hearing from you soon. (Include your phone number if you wish.)

Sincerely,

your name
your address

Thursday, January 29, 2009

Perks of a Mega-Family

I am a Dunkin Donuts girl. I was, after all raised in Vermont. However, where I am now located, is Krispy Kreme country. I have not ever been to the actual Krispy Kreme shop though. Mainly because you can often find these Krispy Kreme fundraisers all over the place. T-Ball, cheer-leaders, parks&rec., schools, there they are, groups of kids, in the street, selling donuts. You don't even get out of your car. They just walk up to the window, and the deal goes down.

Today I ventured into the Krispy Kreme shop. They have the best program in the world, and after today, I am now a Krispy Kreme fan. Why oh why did I wait so long to take advantage of this incredible offer? We always get these little pamphlets on report card day saying to stop into Krispy Kreme for a donut for every "A", up to six. Well, I have never taken the kids over to Krispy Kreme, because we have seven kids, so what good would six donuts do us?

Today was different. Today, I had my kids, as well as my brother and his step-daughter, who goes to the same school as my elementary kids, with me. And we decided to check out the Krispy Kreme incentive. A donut for each "A" up to six was true. The part I misunderstood? Low and Behold! Up to six PER KID! 32 donuts later, we left Krispy Kreme, without a penny out of pocket. Yes, that was THIRTY-TWO donuts.

My brother and I also came to a new realization about all of those Krispy Kreme fundraiser's. We now know where they get all those donuts they are selling. We know your game coaches. We know you do those kids' homework to make sure they all get A's for your fundraisers. I feel bad for the poor kid who gets a B+. He gets thrown off the team doesn't he? Who cares if he's the pitcher? He needs to bring home the donuts!

Sunday, January 25, 2009

GKTW: Day 4, Part 2 (Rest schmest. Who needs it?)



We got back to the village in time for dinner in the Gingerbread House. It was fantastic of-course. Although our plan was to go back to the villa to relax, we were told that tonight's village activity was a life-size candyland game in which the kids are the characters at Matthew's Boundless Playground. This playground was aptly named "boundless", for it's wheelchair accessibility. A playground with a candyland theme, built of accesible ramps is a sight to behold. Because our picture's were taken at night, we were unable to capture the magic of this place.

The older kids asked to spend some time in the gamerooms, and we figured that they needed a break from the parents, so we took the younger boys over to be pawns in the game. We were told later that the older ones had an amazing time.

Over at the playground, the boys were paired with an incredible volunteer, a college student, who told us that this was where she chose to spend all of her Sunday evenings. She had GIANT candy-land cards, with colored squares of single or double, just like the real game. The boys took turns pulling a card, and then they had to go to whatever the card said, by way of whatever the volunteer came up with. Because our boys are physically able, the transportation methods involved dancing, crawling, spinning, crab-walking, etc. They had an amazing time! When they got through the game, in true kid-heaven form, they were rewarded with handfulls of candy, and snow-cones.







After the life-sized candyland game, It was time for a new game, make a life-sized candy cane! The boys were paired with Miss Merry, and another great volunteer, and they proceeded to turn Miss Merry into a candy-cane.



Wrapping Miss Merry in red & white streamers turned her into a candy-cane




Being asked by the emcee "What kind of candy-cane" they turned Miss Merry into.
"Peppermint" duh. Also they were asked if they planned on turning their parents into candy-canes when they got home. Their answer "If they let us".



There were more games (and a dance party) at Matthew's Boundless Playground that night, but we decided it was time to go check on the other kids over at the gamerooms in Amberville. We found them, and since our night of relaxation was not happening, we decided to use the pillow-coupons we had received, and make Andrew's star in the castle of miracles. First though, another ice-cream trip to the ice-cream palace.

The thing that I thought was so cool about the pillow-making, besides the machine itself, and the fact that it spit out un-duplicated, unique pillows for all the kids, were our voluteers that night. We were assisted by a young girl, and her mother. I know that at home, our kids' volunteer opportunities are limited by their age, and I am so greatful to GKTW for allowing people of ALL ages the chance to volunteer. I wish we were closer, so that our kids could volunteer there. It is definately something that will happen though. All of them have mentioned it to me.



Bubbles are cool




They have to turn the knobs and push the buttons to make the perfect pillow. The buttons say things like 'dreams' and 'wishes'.




Can you see the feathers that didn't make it into the pillows? They say Rejects. lol.





Did I mention bubbles are cool? Even Andrew thinks so.






Andrew makes his star.

The ceiling is covered with them, and it was sobering to realize that Andrew's trip was forever memorialized in that moment. For the rest of our lives, we have the opportunity to visit his star there in the Castle of Miracles. It is his, and I pray that he will have the chance to visit it.

When he was done, he had to put it into a box, and the 'Star Fairy' came and took it. The next day, we received the coordinates for his star, pinpointing exactly where it was located. The Star Fairy had put it up overnight!




We went back to the villa, tired, content, excited about what tomorrow may bring, sad that we had reached the half-way point of our trip.