Since Tatyanna has made the executive decision that sleep is for the weak and as such we can all go without thus rendering me incapable of forumlating complex sentences that aren't horribly run-on, I am going to put up some links, call it a blog post and grind myself some more dave's homeroast because it is awesome.

***

If you feel like being amazed (i highly recommend this one!):

http://www.youtube.com/watch_popup?v=vOhf3OvRXKg

If you feel like being amused:

http://www.guidespot.com/guides/awkward_family_photos

Or, if you are anything like my daughter and could spend hours watching videos of strange cats:

http://en.video.canoe.tv/video/comedy/comedy/1906868833/creepiest-cat-ever/60379727001

lexi quote of the day:

"I'm getting bigger, pretty soon I'll have to get married....but I can't marry daddy......cuz YOU already married him first!" *insert glare*

Inspiration Quilt

For the last several weeks I have been making my plea to all those on my facebook but for some reason am only now thinking to mention it on here. On January 22 a movie entitled "Extraordinary Measures" will hit the theaters. Starring Harrison Ford and Brendon Fraser, it is a story of a father's fight to save his 2 children from Pompei Disease. His fight so closely mirrors our own struggle in the Batten community and we are all hoping that it will help create awareness of the plight of the many children who suffer from rare conditions. To help give back to the community, Extraordinary Measures has a contest up on their website. The winner will receive a donation of $10,000 to put towards the charity of their choice. My plea to you all is to please take a moment to go to the website: http://extraordinarymeasuresthemovie.com/ and click on the link "Inspiration Quilt" On page two of the quilt is a video entitled "Noah's Hope:Fix You", you can also find it by typing Noah's Hope into the search feature. Noah and his little sister Laine, like Tatyanna, suffer from late infantile Batten Disease. Please take a moment to watch the video and then vote. Then, you can do the same thing tomorrow and the day after. In fact, you can vote every day! The 2 seconds that it takes may be all that's needed to make a difference. Noah's Hope Foundation will match the dollar amount if the video wins and all proceeds go directly to the fight against Batten Disease. Our amazing kids fight so hard but we need your help. Please.

passive-agressive ranting

Dear ____________

Normally I'm a fairly easy going, live and let live kind of girl. I don't usually get upset over small things and, even when bothered, I don't generally say anything. I prefer to give things a day or two to see if it really matters or not. Apparently, this time, it does. The other day I was offended. Disturbed enough that I lost sleep over the matter.....for 2 nights. I'm not sure if the stress of the holiday season has made me overly sensitive or if its because I expected better from you all. You are educated, intelligent people. I am disappointed.

Addressing your kids affectionately with the monikers of Short-bus and Special ed is no more appropriate than giving them nicknames containing racial slurs. Using that kind of language is not funny, it's not cute. It is inconsiderate and just plain ignorant. As the parent of a courageous little girl who qualifies for that particular club, I was hurt. Over the last year and half I have become very familiar with many kids with significant and varying medical needs, most would be considered card-carrying members and all have more heart, resilience and tenacity than I have ever seen in a person. These kids endure more than any person should ever have to. Using that kind of language "in fun" is demeaning to them.

I truly hope that you will reconsider the nicknames that you have chosen for your children but if not I make this request: Every time that you address one of your "normal" daughters by Special ed or Short-bus, please take a moment to give thanks. Be thankful that, thus far, you have been allowed to remain naive and sheltered. Be thankful that, in the grand scheme of things, your little girls have enjoyed relatively good health.

Your children have the only thing that many of us want for our own sweet kids, a future. Don't take that for granted.

waiting for santa......

Dear Dog,

The Christmas tree is considered holiday decor and its sole purpose is to give the house an air of festivity. It is NOT a help-yourself, all you can eat, buffet of colourful, plastic chew toys. If you value your place in this family, you will cease and desist your current behaviour immediately.

I thank you for your attention to this matter and urge that you conduct your self accordingly.

Sincerely,

The Management

***

Dear Kittens,

I realize that you are cats and as such have been indoctrinated, since birth, with the belief that the world is your oyster and you can do no wrong. Truly, I hate to be the one to bring any sort of doubt to this belief system. But, the large tree that has taken up residence in the living room was NOT put there for your amusement. The colourful baubles that adorn its branches are NOT your playthings and your jumping from branch to branch is NOT poetry in motion. Truthfully you are all at that gawky, teenage stage of kittenhood and although you may feel graceful, that cat-like precision is currently under development. I realize that your mother has told you differently, but seriously, anyone who still breastfeeds their teenage children should not be trusted. I apologize for bringing this harsh reality to light but it had to be done.

Sincerely,

The Management

Shopping that you can feel good about

Tom's Shoes - I just came across this website today and I've got to say that it's something that I'm really excited about. For every pair of shoes that you purchase, Tom's shoes will make a pair for a child in need. How cool is that??! It's win/win. Not only do you have a funky pair of shoes, or 7, but someone who really needs the protection that footwear provides, no longer has to go without. I fully intend to support this company in the new year and will let you know how it goes!

Dave's Homeroast - This is also a business that I'm excited about. In fact, I made my first order on the weekend and am eagerly awaiting its arrival in the mail! Dave is the father to a son who has the juvenile form of Batten Disease and all proceeds from every sale go towards supporting Batten Disease and research. And, if that's not a good enough sell for you, he often has a selection of organic and fair trade coffees available for purchase as well. The only problem that I had with Dave's Homeroast was making a decision between the interesting (and often completely unpronounceable) types of beans that he had at that moment. The shipping was inexpensive and less than 24 hours after I made my order, I received an email from Dave informing me that he had just roasted my beans and would be placing them in the mail the following morning. Now that's service!

Possum Sauce *Warning - unabashed mommy bias ahead* - purchasing info coming soon! No there is no possum, nor is there any sauce - which in my opinion is a very, very good thing as I don't think that those two items go particularly well together! Possum Sauce is entirely my son's creation and will consist, primarily, of t-shirts with a variety of designs bearing the Possum Sauce logo. These are probably t-shirts that you buy for your skate-board obsessed son or daughter and not your macrame and decoupage obsessed auntie. But, I could be wrong, I don't know your aunt. All profit from the sale of Keirnan's t-shirts will go towards Tatyanna's Hope and supporting Batten Disease research. I'm pretty proud of my kid for wanting to get involved and help out and think that this venture will be really good in helping him feel like he's making a difference. Skylar is also working on some ideas and I hope to be able to share that info with you soon!

It's been that kind of a night. A perfect follow up to a reality bites kind of day. No, I can't say I want to talk about it right now. Please, if it could stop raining* anytime now that would be great as I seem to have one of those crappy umbrellas that they try to sell you on the streets of Beijing for the very cheap price of 10 RMB "because you from Canada, and I love Canada". Yes, I know I'm generally a "learn to dance in the puddles" kind of girl but for tonight my galoshes are chafing and all that dancing is just giving me blisters.

*that would be figurative rain as opposed to literal, the only precipitation that I we will see for a very very long time comes in the frozen variety.

Parenting law #45433

The chances of your child crawling into your bed in the wee hours of the morning and throwing up all over your sheets can be positively correlated with several factors. These factors are:

1. The sheets on the bed are freshly laundered.

2. The sheets on the bed are your favourite, million thread count, Egyptian cotton sheets that you are fairly certain fell from heaven above because they are that soft.

3. You have just had an incredibly stressful day and are truly looking forward to the reprieve granted by several hours of slumber

4. This is the first night that you actually have the potential of getting over 6 hours of sleep.

5. At some point during the day you found yourself thinking, "Wow, it's been a long time since any of the kids have been really sick. I'm so lucky!" Never, ever have this thought. It will jinx you every time.

If all these factors occur simultaneously, the linear relationship becomes significantly stronger and you should probably just drape your bed in plastic now and save yourself the inevitable late night date with a bucket and a jug of Tide.

A cautionary parenting sort of tale.....

When your child comes comes up to you wearing oven mitts and a tentative look on her face...this is a bad, bad sign.

When the tentative look is followed by, "Mommy, I tried to make myself some pink milk....all by myself, beause Keirnan and Skylar wouldn't help me.....but I couldn't make it work out very good. I think I need some help, cuz....... nope, it didn't work out very good at all.".....this is most definitly a bad sign. Nothing good can come from this.

When your child hands you the oven mitts and says "You should probably put these on" and you enter the kitchen and realize that it has a sort of sweet and smoky smell, remnicent of evenings spent around a campfire and flaming marshmellows on a poplar branch......like I said, nothing good. But on the upside, you entered the kitchen knowing it was bad and hey, it could always be worse!

Needless to say, an impromtu family meeting was held regarding the responsibilities of older siblings while I'm putting Tatyanna to bed and Trent is not home. Emphasis was also placed on the rule that only big people are allowed to touch the microwave. We also touched briefly upon the fact that pressing 123....8* is probably a touch excessive when it comes to taking the chill off of a glass of pink milk.






*I'm fairly certain that she didn't really press 123....8 but I could be wrong. How long does it take to make milk jerky in the microwave?

snow day

I'm generally not the type of person who can't get into the Christmas spirit without snow. Personally, I would be just as happy to sing a round of "Deck the Halls" on a beach somewhere. But, I will (reluctantly) admit that it was sort of nice to finally have snow on the ground. Over the course of a few hours, that which was once drab and grey was transformed into a magical landscape that glittered in the veiled sunlight. Since Tatyanna was in school for the day, I took advantage of the nice weather and headed to a park with Lexi. We met up with one of her friends from ballet and spent the afternoon playing on the climber and building a snowman. Truthfully, this is only the second snowman that I have ever helped build in my entire life. Yes I am aware that that fact is probably grounds to have my Canadian citizenship confiscated. That aside, I think our Frosty turned out pretty good!

Lexi quote of the day : apparently I was staring a little too longingly at the pile of M&M's that she was carefully counting and sorting by colours because she quickly looked up and very sweetly informed me,

"Mommy, you don't need the calories in those."

I was later informed that this line originally came from Ice Age 3 and while I appreciate her ability to appropriately insert random movie quotes into daily conversation, I've got to say that I liked it better when she stuck to Elliot (Open Season) and would wander around the house saying "magical, big guy!" At least then I might have managed to score and M&M or two.

***

My computer has died. It's not pretty. One minute I was contentedly installing some much needed critical updates, blissful with the novelty of finally having highspeed internet, the next....nothing. Just as I hit the "restart computer now" button I had the briefest feeling of impending doom. Apparently that was my soul mate bidding me a fond adieu and thanking me for the memories. Now when I hit the power button, the lights come on, just long enough that I know that my poor laptop really wants to rejoin me in the land of the living and then, nothing. I have no idea what is wrong. I am, admittedly, not even the remotest bit technologically savvy.....which is perhaps a skill that I should learn as the husband's vague promise of "I'll get to it....maybe this weekend" is just not good enough. Doesn't he know that I have important things to do? Blogs to read, photos to upload, websites to update? Frantically typing entries into the iphone or on a borrowed computer just isn't the same! I'd love to tell you that I'm taking this time to enjoy the crisp fall air, organize my cupboards or sit zen like, contemplating my place in the universe but it's just not happening. I might get there eventually.....once I'm done chewing my fingernails and pulling my hair out frantically trying to figure out how to resurrect my beloved laptop.

***

As much as I generally hate those 404 errors, this page is kind of funny.....even if I have to look at it on a computer that's not my own.

http://www.ibiblio.org/gaelic/john/greatkilt/greatkilt.html

why you are probably a better parent than me.....

For all appearances it looks like the picture of sibling devotion, no? A big brother sitting next to his little sister, patiently enduring websites that can only appeal to 6 year old girls. What the picture doesn't show is that on this particular occasion, the awesome big brother happens to be playing on the Webkinz site. It also doesn't show that he has just entered the code from a brand new Webkinz toy belonging to an absent party and has named the resulting cyber kitty "Sticky-Head". Because this is only a photo on a blog you don't hear the resulting screaming, yelling and general sense of woe coming from the owner of the Webkinz account. Apparently the creators of Webkinz did not take into account things like the devious nature of older brothers and once named these pets cannot be re-named (unlike real life kittens who can go from Stripey to Alienfishcat to Olivia). I'd love to tell you that I did my job as a good mother, reprimanded the offending party and fixed everything for the individual who has been so profoundly wronged but for some as soon as I start talking, it all seems kind of funny and by the time I get to the word "Sticky-Head" I'm laughing too hard. Word of advise to those considering becoming parents, laughing is NOT the appropriate action in this instance and will only makes things worse. It will make you seem just as guilty as the perpetrator of the injustice and you will immediately get the title of "worst mom ever". But, by this time, it won't be the first time that you've worn that particular title and you know that it is fleeting and so you will probably continue to giggle and plan to make amends once the dust settles a little. On that note, I guess I'd better go and drop another dollar in the kids' future therapy fund.

Once again I sit here, tears prickling, heart threatening to break. I don't want to give in. I can't. As soon as cracks begin to etch their way across the tough facade that is so very carefully maintained, everyone around me suffers. Moms have to be the oil in the machine, the glue that keeps it all together. We don't get to have bad days. Sometimes I wonder how many times I can pick up the pieces. How long before I can no longer put them all back together?

It was a rough weekend in the Batten community. I found out this morning that we lost two courageous fighters. Two little boys gone before they ever had a chance to live. Two more families left trying to grapple with the gaping hole that is left behind. The part that gets me is that nothing is being done. While there is money for researching water on the moon and the gases emitted from our bovine herds, nothing is being done for Batten Disease. Our kids are dying but not in numbers great enough to merit any sort of worthwhile research. Most of the research that has been done is funded by families who live in the shadow of a disease that is relentlessly stealing their children. That's not right. How can there be nothing better? The amount that we need is a drop in the bucket compared to the amount that is wasted and mismanaged by greedy politicians. We don't need much, there are trials ready to begin that show a great deal of promise but without funding from the private sector, nothing can be done. Our kids do not have time to wait. Every day that passes we lose a little bit more until there is nothing left. Tonight, I am angry. We, as a Batten community, have sent thousands of letters to politicians, philanthropists, celebrities and researchers but it just isn't enough. I feel like we're part of the crowd at the end of the Horton Hears a Who shouting (I have 4 kids, I watch entirely too many animated flicks) "We are here, we are here, we are here...." but so far, our voices disappear and our cries go unheard. It's not a cause that people want to rally to. People like happy endings and so far there has never been a happy ending for our kids. They fight so very hard, hanging on desperately. Waiting. Hoping. But it's just not enough.

Tonight, I am angry, my soul is tired but I won't give up. With the dawn comes a whole new day and the fight will begin once again.