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.

.

I have always considered myself an open minded individual. During my years as a psychology student in university we spent hours discussing the role of gender stereotyping and its effect on children. In our "qualified"opinion, raising your child in a gender neutral environment and encouraging growth and exploration in all areas was the key to optimal development. We thought we were pretty clever, in our 19ish years of wisdom. Then, I actually had kids of my own and realized that it was all a crock of.....something. By the age of 2 my boy (despite the dolls etc that were available to him) was obsessed with monster trucks and earth moving equipment and Skylar seemed to have a innate homing devise for the nearest mall and was forever asking for more "pretties" for her hair. Tatyanna was a bit of a wild card (much like her mother) and was only obsessed with horses. Pink horses, brown horses, horses riding in monster trucks. She was only interested if it had a mane and tail....with or without "pretties". We always sort of wondered how Lexi would turn out, as she did seem to have a fairly broad range of interests. That is until she and I had the following conversation this morning:

(thus proving in my opinion that psychology books are only good in theory and in truth, girls will be girls and boys will be boys)

Lexi: What's your favourite colour mommy?
Me: Red
Lexi: Oh.
Me: What's your favourite colour?
Lexi: It's purple....I used to like blue....but not anymore. And you can't like red anymore either. You have to pick a different colour.
Me: But I like red. Red is most definitely my favourite colour.
Lexi: It can't be. You can't pick red. Blue and red go together. Keirnan can pick red because he's a boy and they are 'boy' colours.......how about pink?
Me (because I like to be difficult): Nope, I like red......red it is....in fact, I love red.
Lexi: Well, you can't pick red.

****the stare down begins****

Lexi: fine...is it sparkly?
Me:??
Lexi: I guess you can pick red.....but only if it's a sparkly red.
Me: Uh.....Ok....sparkly red it is.

So, just in case you were ever wondering, my favourite colour is red......but only if it has sparkles.

enough to spare

"I don't want peanut butter on my toast this morning.....I think I'll have 'personality' instead today."

There are no words. Today I was present as friends said good bye to their 7 year old son. On the way home from the funeral I found out that Batten Disease had claimed yet another angel. I would love to be able to take the scattered thoughts that are swirling around my head, write them down and have them make sense but I can't. Because it doesn't make sense, no matter how hard I try. It's not supposed to be this way. I lay here, the darkness of the night pressing in around me, Tatyanna nestled into my side and it all hurts so very bad. The grief I feel for these families becomes intertwined with my own sense of loss and the pain is overwhelming. Parents are not supposed to watch as their kids are laid to rest, it's not the natural order of things. It's just not right.

And so, for tonight, I hold my sweet girl close, grateful that I have another night to lay kisses on her soft hair, a prayer on my lips that I can please have tomorrow. It's all I ask for. Just one more day. But as time moves on it becomes more and more apparent that she is slowly becoming more heaven's child than my own and I know that one day, far too soon, I too will have to say good bye.

Fence sitting

Even more than Jon vs Kate or Jennifer vs Angelina, the H1N1 vaccine has turned mild mannered people into angry, volatile masses. Damned if you do, damned if you don't. It doesn't seem to matter which stance you take, several "well informed" individuals will jump down your throat and inform you, in their expert opinion, as to why you have just made an incorrect decision. Public health is swamped and will not answer their phone or return calls. It's a mess, really. Despite the fact that the first priority, in Manitoba, goes to those with underlying health conditions, the setup for mass vaccination makes it almost impossible for these people to get vaccinated whether they want it or not.

Truthfully, I'm still on the fence, and it's not a comfy place to be.....I'm pretty sure it's one of those black painted, pokey, wrought iron numbers. Poised precariously, unsure of which side of the fence to fall, I have spent hours researching and deliberating. My younger kids have never been vaccinated for anything. While I'm not against childhood immunization, we decided to follow a delayed vaccination schedule. It was a decision that seemed right for our family. Then life (read:Batten disease) got in the way and we never did have the younger two vaccinated. Now, I'm seriously unsure of what to do. While I have some reservations regarding the H1N1 vaccine, I have no doubt that if Tatyanna were to contract the flu, at the very least it would cause a significant regression in her condition. On Friday I thought I had my mind made up. I headed over to the husband's place of employment which was hosting a vaccine clinic at 1pm. Even before noon the line was out the door and down the street. When Trent inquired as to whether he could sneak Tatyanna in sooner (yah, i know...but you can't blame us for trying...right?)) he was given a resounding "No" from the public health nurses. Truthfully, I can understand that decision, I really can. The part that begins to irritate me is the fact that the same nurses, who demanded that my 6 year old child with a degenerative neurological condition and inability to maintain her body temperature wait for over an hour in the cold, were perfectly willing to vaccinate my husband early. My husband who does not, in any way, fit into the top priority category but simply happens to work in the business holding the flu shot clinic. Hmmm, can anyone see the logic here as it seems to have eluded me. And so, I am back on the fence again.