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.

Things have been pretty crazy here as of late and so I'll do a really quick update...in point form

- Since so many have asked - Last weekend we decided to go ahead and get the girls the N1H1 vaccine. I was really on the fence about it until Tatyanna came down with a cold the week before. It is now becoming more apparent the extent to which her whole body is affected by the Battens and I have no doubts the we made the right choice. I also went ahead and got the shot. I have asthma, which is generally well controlled and depending on the season, symptom free but I know how quickly it can get bad. As the primary care giver to Tatyanna, our family can not afford for me to get seriously ill. I am aware of the argument against it and it was not a decision that was made lightly. Unfortunately my family must live in present and the vague threat of future complications did no seem like a good argument against the vaccine.....for us. I do have to say, if those are the side effects from the needle.....I really, really do not want to get that flu! Between the muscle aches and joint pain and hot and cold flashes, I was a miserable the first night. By the next morning, though, other than some residual arm pain, all was right again in my world. Tatyanna, who we were most concerned about, had no side effects whatsoever!

-Speaking of Tatyanna, she is doing awesome lately! She has been so happy and "talkative" over the last few weeks that it has given all our spirits a much needed "lift". Unfortunately she has also been happy and talkative at 3 in the morning. Coffee is a very good thing.

-We did go ahead and meet with the surgeon regarding a future g-tube placement for Tatyanna. It is becoming increasingly difficult to get enough calories in over the course of the day and although she is not losing weight, it has been almost 3 years since she last gained weight. As she continues to grow, she falls farther and farther behind on the height/weight percentiles.

-The older kids did really well at their last parent teacher interviews. They have had so much to deal with over the course of their lives and it amazes me at how resilient kids can be!

-Speaking of older kids (rockin the segues today folks), it's amazing how quickly they can get out the door in the morning when you threaten to wave the school bus on wearing nothing but a towel. I really should have tried that one sooner. Fortunately for everyone, the kids are smart enough to realize that their mother never bluffs.

- DITL is up over on lj, if you care to take a look.

-We actually now have high speed, "for real" internet....as opposed to the other kind which masquerades as high speed, lures you into a 3 year contract and then never actually delivers anything faster than dial up. Dear Xplornet, I hate you. Our email address will be changing right away, so if you need the new one, just let me know.

complete randomness

I had always found Walmart's "roll back the prices" signs amusing as often the savings would amount to a few cents, but this one really takes the cake. The orange sticker says a savings of $0.50/kg and yet both the other prices remain the same. Hmmm.... something's fishy here.

Finally a tree that the goth crowd can appreciate! Part of me wants to take it home, cover it in black and white decorations and watch The Nightmare Before Christmas.

The disclaimer, "No fairy tale creatures were harmed in the making of these shoes" does not apply here.

Since adding texture to photos seems to be the fun and trendy thing to do, I thought I'd like to play too. I think I could use some practise, but it was fun trying.

This is, to date, one of my favourite photos. Tatyanna was 3 and Battens had not yet begun its relentless attack. We were at my mom and dads' house and she was having the best time ever running around the backyard and playing in the inflatable kiddie pool. Coming from a brand new housing development in a bigger city (complete with postage stamp yard), she would call their yard 'the park' and was in her glory with all the space to play. I snapped this shot during a rare moment that she was actually sitting quietly. For a kid who was nonstop motion and loved to ham it up for the camera, this picture was extremely out of character. The intensity in her eyes and almost uncertain expression on her face seemed so out of place on that hot July afternoon. It's almost as if she had some knowledge that we were not yet aware of. Within moments of the shutter clicking, she was off and running through the yard and splashing in the pool with her little sister.

For comparison, here's the straight out of the camera original. It's not the best shot, technically, but I like the composition and the way it captures the emotion of that moment so it's fun to play around with.