Wednesday, December 30, 2009

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.

Thursday, December 24, 2009

Tuesday, December 22, 2009

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.


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.


The Management

Tuesday, December 15, 2009

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 Homeroas
t - 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!

Tuesday, December 08, 2009

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.

Sunday, December 06, 2009

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.

Thursday, December 03, 2009

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 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?

Tuesday, December 01, 2009

snow day

lexi snow 1


lexi & bella

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!

Wednesday, November 25, 2009

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.

Tuesday, November 24, 2009

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.

Sunday, November 22, 2009

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.

Saturday, November 21, 2009

Things have been pretty crazy here as of late and so I'll do a really quick 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" 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.

Tuesday, November 17, 2009

complete randomness

2009 11 14_0277_edited-1

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.

2009 11 16_0260

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.

Thursday, November 12, 2009

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.


Tuesday, November 10, 2009


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' about pink?
Me (because I like to be difficult): Nope, I like it fact, I love red.
Lexi: Well, you can't pick red.
****the stare down begins****
Lexi: it sparkly?
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.

Thursday, November 05, 2009

enough to spare

2009 11 05_0223

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

Tuesday, November 03, 2009

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.

Monday, November 02, 2009

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.

Saturday, October 31, 2009

Happy Halloween! Not feeling it this year. In the past, I went all out sewing costumes for the kids. Some years I was organized and had things done well in advance, other years the costumes went from the sewing machine to the kids' backs and we were out the door. It was sort of rushed and incredibly last minute but I function well under stress so it worked. This year, I just couldn't do it. I could blame the fact that the dog turned the cord to the serger into several piles of plastic and wire but truthfully, I was kind of relieved. All of a sudden I had an excuse that sounded ever so much better than "I don't want to!" This year the reality of Tatyanna's condition is weighing a little more heavily and although we are trying desperately to keep things functioning as normally as possible for the sake of the other kids, some times we stumble. Sometimes the grief that Trent and I carry just weighs too much. Although we keep moving forward, doing the little things becomes so very difficult. House work is neglected in favour of snuggling on the couch watching cartoons and fabric for costumes sits in a heap waiting for another time.

This year I tied dyed a shirt, tacked some flower trim onto a pair of flare bottomed jeans, added some daisies to her hair and Tatyanna was a flower child. I bought some black wings to add to Lexi's tap dance ensemble, put some makeup on her face and she was instantly transformed into a night fairy. Skylar put on last year's costume (Keirnan has declared himself too old for such fun) and we were good to go. The effort took minimal budget and less than half an hour of effort and the kids went out and had a blast and for me, that's what really counts. I want so badly for my kids to experience life as normally as possible for as long as we can. I want them to remember their sister as simply being a part of the family. I want them to remember us having good times because that is what is going to help carry us through when things get tough.

Friday, October 30, 2009

Scene - Lexi, sitting in the bathroom, Halloween costume on for a trial run, staring at her reflection in the mirror with a not so happy expression.

Lexi (brow furrowed): Hmmm.....I look an evil fairy.....

Me (think fast, tread lightly): ummm..... It's Halloween so maybe that's ok?

Lexi : I look like the bad fairy on Tinkerbell and she's not nice at all.

Me : ?? She wears red....doesn't she? Well.....I don't think you look evil. I think you look beautiful! Anyways, do you think that there are only fairies out during the day?


Me: Don't you think that maybe there are fairies that come out at night too?

Lexi (looking skeptical, but interested): Hmm......yeah, I guess so.

Me: Well, if they only come out at night, they are probably doing some super secret, important fairy stuff and don't want to be seen. If they wore any other colour but black then everyone could see them. I think you look just like a night fairy!

Lexi (barely able to contain her excitement): Wow!!! I'm a night fairy......princess!!!!


And that is how to rationalize with a 4 year old. Although I believe the key element is luck and I truly have no idea what I would have done if she hadn't followed along with that train of thought.

2009 11 05_0225

Friday, October 23, 2009

Happy Bday to a pretty awesome person!

*Belated birthday post



It doesn't matter how old you get, you will still be the little girl who liked to order pespi with her hanguber and exclaimed with wonder that there were sparkles and stars shining in her feet after a particularly long car trip. I know that we often have differing opinions on how life should go around here but I just wanted to say that I am truly proud of the woman that you are becoming. You have had to endure far more than many kids your age and I truly wish that so many things could have been easier for you. But life isn't without its challenges and you have risen above and grown into a strong, independent person who has a good understanding of who she is. You have a beautiful spirit and underneath the sometimes prickly adolescent exterior, a heart of gold. I love you much my girl. Happy 11th birthday!



Thursday, October 22, 2009

"it doesn't matter how rough your day was, when your husband comes home and responds to the question of how work was with a stricken look and "I ate muskrat!!!" you have to smile....just a little"

That was my facebook status line a couple of days ago. It quickly became the source of much humour both online and off....most of which was at my poor husband's expense. An online friend even went so far as to helpfully send a link to what has been termed "a once popular and always reviled song"- Muskrat Love by Captain and Tenille. Some have even called it a smash hit, although once you hear it, I'm fairly certain the only connection to that word is the sudden desire to smash the source of the auditory assault. The 70's were truly messed up times. Trent in his typical, easy going manner was good natured about the ribbing. As someone who was a good friend long before he was locked into matrimony, he was well aware that aside from the fact that his wife can barbeque a mean steak for a vegetarian, she is also a complete pain in the butt. Did you know that you can download that song as a ring tone? For a mere handful of change, you can listen to a song devoted to rodent romance every time your phone rings.

It's now been several days since my husband's gustatory adventure and the jokes have faded but do you think I can get that song out of my head? No, no I cannot. *sigh* I suppose I had it coming.

Wednesday, October 21, 2009

Kid of the day


Every so often Tatyanna's grade 1 class has what they call the Kid of the Day. It's a moment where they can celebrate the individuality of their peer and practice their drawing and printing skills. Recently, it was Tatyanna's turn and before we could even get her stuff in her locker there were kids running out of the class excitedly informing us that Tatyanna was going to be that day's chosen child. Truthfully, I had no idea what exactly it meant so I smiled, responded with an enthusiastic "wow! that's awesome!" and went on my way. When I returned to the school to pick her up, I was given a package containing all the drawings that the kids had made. As I began to flip through them, smiling at the kids' burgeoning art skills, I began to notice something that truly made my day. Some kids had chosen to draw the gold ring on her finger, some gave her ponytails, one even attempted to draw her bright orange wheel chair, but almost everyone had drawn her with a huge smile. As a parent to a "sick kid" I always worry about how her condition will affect those around her. Batten Disease is complicated and we have really struggled with how much information to share with her class. I know that eventually there will come a time when we will have to withdraw for the sake of the other kids but for now, I feel good about our decision to have Tatyanna attend a regular grade 1 class. At this moment, she is an important part of their class, and although she has some obvious issues, they choose to celebrate what is good.

Thursday, October 15, 2009

snow day

Dear Mother Nature*,

I know that you are getting up there in years and as such are entitled to some forgetfulness but there seems to be significant confusion this year regarding the order of the seasons. Until now, the norm has always been winter, spring, summer, fall and not winter, springish, winter. You seem to have entirely forgotten about summer and fall. 2 weeks ago, we had a brief reprieve where the temperatures soared to 30 September. What was that anyways? A hot flash? At any rate, it did not help the country prepare for the early onslaught of winter. The leaves are still green on the trees and my yard is covered in snow. This just isn't right. I can understand some mix up with maybe one season, once in a while, as this isn't the first time that we have missed out on summer. But, 2 seasons??! Despite the fact that it is generally a precursor to the dreaded Manitoba deep freeze, I love fall. The crispness in the air, the colourful leaves, the geese flying overhead, it's an amazing time of year. One that is meant to be savoured with a mug full of chai and a fuzzy sweater and not an entrance full of wet soggy mittens and winter boots. I can handle missing out on summer again but could we please, please have fall back?

On the upside, to balance out the millions of disgruntled prairie dwelling Canadians, my kids are thrilled.


*Just to clarify, that was totally tongue in cheek and I have not converted to paganism nor do really I believe in mother nature. Mom, you don't need to schedule an intervention with the pastor or somesuch. :)


Friday, October 09, 2009

Because middle of the night ramblings are often a cause for much regret, I have decided to stick to a safe subject. Shoes. Here's my top 3, favourite pairs:


This is me in a shoe. I've had this pair of docs since the days when I was allowed to wear fishnets, ratty jeans and multicoloured hair. My kids have since outlawed such attire. Despite what the Ripcordz try to tell you, kids don't' necessarily like it when "their momma wears army boots". These boots have not had an easy life. Years of abuse have left them a little...ok, alot battered. The leather is faded and they are full of holes but to simply throw them in the garbage to be covered in the remnants of last night's dinner would be so very wrong. And so, they sit in my closet. Allowed the dignity of semi-retirement. Once in a while, I still wear them and the moment I put them on, the planets realign and for a minute the world is least until i step in a snowdrift and then water leaks through the hole and I'm stuck with cold, soggy feet for the next few hours.


I saw these in a Chinese market and couldn't resist. I know the tag says Converse and they probably aren't but I love them anyways. They are a shout out to my punk rock past. A subtle way of remembering some truly fun times. Although I was on my game and bartered them down to a completely respectable price, the sales girl probably could have had me within the first couple of tries. There was no way I was leaving without those shoes.


Realizing the skull covered Chuck Taylor wannabes aren't necessarily suitable attire for meetings with neurologists and teachers etc. I recently went shopping for a new pair of shoes. The moment I saw these I knew I had to have them. ( if you want to have them too!) For some reason, they remind me of China, and that makes me happy. They are also the comfiest shoes that I have ever put my feet into. My daughter Skylar, however, does not share in my love for the shiny, new shoes and has told me that I should never, ever wear them when I come to her school. In fact, at the shoe store when the sales person approached and asked if we needed any help. My girl quickly responded with a pointed look and a "NO! We're just looking!!!" Sorry, Skylar you just sealed your fate right then. For the last 2 weeks those particular shoes have been on my feet every single time I've had to walk into the school. Because I love her like that. Now I just need to figure out how to get the brown alligator pair and the paisley pair.

*Yes, I realize how pathetic it is that I have pictures of my shoes, ready to use, already on my computer.

Monday, September 28, 2009

some colourful genetics

My girls are not what anyone would call wallflowers. The louder and brighter, the better. Throughout their younger years all writing utensils had to be kept up and out of sight. Should a wayward maker fall into the wrong hands, the following havoc was certain to ensue:




All we need to make the previous photo set complete is one of my grade 7 photos, proving that maybe they come by their heavy handed and colourful technique a little too honestly.

Friday, September 25, 2009

I could feel my heart sink and anxiety start to prickle at the edges of my consciousness. Of course that particular store in this mall had to be right next to the only place that I buy jeans. For a moment I debated going home, destined to spend an eternity borrowing clothes from my older daughter....or at least until she outgrows me (which could be tomorrow at the rate she's going). But, that would be foolish. Living in a relatively rural part of the country means that when you're in the city, you have to shop and normally, that's not such a bad thing. I gave myself a brief pep talk and began pushing Tatyanna's wheel chair with determined steps, hoping beyond anything that she wouldn't notice the sunny, yellow glow emanating from the source of my unease . It used to be her favourite place in the world. When we lived in Edmonton she would spy it from the upper concourse of the mall and make a mad dash for the nearest escalator yelling "I'm going to make-a-bear!!!" She didn't care if she wasn't getting a bear, she just loved the process. The picking of the outer layer, the fluffing machine that stuffed the chosen companion to the perfect level of huggability and the kissing of the heart and making a wish before the new friend was sewn up, ready for dressing. She kissed a lot of hearts. I think most of our menagerie of build-a-bears contains more than one. Her eyes would sparkle as she danced through the store eagerly helping to chose the perfect outfit and accessories. The shoes were her favourite. A girl after my own heart, it didn't matter if they didn't have underwear...the outfit wasn't complete without an awesome (or is it pawsome?) pair of shoes.

I wasn't sure which would be worse, if she saw the store and didn't react at all, or if she did. At first I thought we were going to make it by without incident. Tatyanna's attention was caught by something on the opposing side and it wasn't until we were almost clear that her head turned. A veiled look of recognition crossed her face as she peered hard into the interior of the shop.

"Look! It's Build-a-bear! Wanna go in?" I asked, trying desperately to keep my voice cheery. Drawing on some apparently vast internal reserve of strength we made it past the helpful store staff and down the row of bins full of waiting animals. They finally have the pony. It was only out in select stores during the "old days", and we kept waiting for it's arrival, knowing that it would have been Tatyanna's new favourite. But the release date kept getting pushed back, and then it just didn't matter anymore.

It wasn't until we hit the fluffing machine, with the bin of hearts waiting to be kissed that the sense of loss came crashing in around me. Apparently, while vast, my reserves are also shallow. Tatyanna stared hard at the swirling fluff and I could feel my heart shatter once again. It was as if she was remembering. Remembering a time when things were better, when she could dance and sing and kiss hearts and make wishes. But with the expression of nostalgia there was also confusion. As if those past times were maybe a dream and perhaps never really happened at all. As if she couldn't comprehend how she had gotten from there to here.

It was all I could take, I think I fled the store fast enough that the employees checked for fires and counted their inventory after I left.

I hate Batten Disease. I hate that it is stealing our little girl before our eyes. I hate that remembering the fun times of days gone by is now done with a smile on my lips and tears running down my cheeks. I hate that every day, I have to pick up the pieces of my heart over and over again. But, I do. I hold my head up and keep going. I pick up the pieces and try to make our life the best it can be. Sometimes it works, sometimes I just really want to go back to a time when my little girl could kiss a heart or two.

Wednesday, September 23, 2009

Today's entry has been brought to you by the letter T and the number 3

I think the last week can be summed up by relaying the following conversation:

Super happy dental office reception lady: Good afternoon, Dr.'s C, G and S's office, how may I help you?

Me (not so super, not so happy): Hello, I had some dental work done a week ago and am wondering if increasing amounts of pain is a normal thing.....truthfully, I'm thinking that maybe I've developed dry sockets in the lower 2 extraction sites.....

Her (still really very happy): Oh??!! Well, you would KNOW if it was that........ (sounding skeptical)

Me: It sort of feels like my head is being eaten....from the inside out......

Her: Oh! Yes, that definitely sounds like it! We'll get you in right away!

Within an hour of seeing the dentist for an extremely simple, 2 minute procedure, I was finally free from the mind numbing pain of the last week leaving me wondering why I didn't just break down and make that call sooner?

Thursday, September 17, 2009

Irony of the day:

While driving the kids and husband to the their respective places of education and employment we came across an accident of the vehicular sort. Wedged into a city vehicle with its front end entirely broken beyond all recognition was a small red car. Emblazoned in colourful type on the side of said car were the words, "Collision Centre Courtesy Vehicle". What I wouldn't have given to have my camera handy at that moment. I'd say that their day is off to a smashing start!


And on that note, I will leave you with the following video, because it's funny....and the world needs more funny.

Wednesday, September 16, 2009

Random observations from the last 24 hours :

1. Before dental surgery they give you a helpful piece of paper which outlines the pre-op protocol and post-op expectations. The words pain and discomfort are used on more than one occasion. Is there anywhere on that document that informs you of the fact that the procedure will leave you feeling as though you were left licking the kill floor of the local meat packing plant while someone beats you with a 2X4? No, no there's not. But I'm thinking that it would be a far better, and more enlightening description.

2. This is somewhat related to #1 - I'm fairly certain that Sookie eats a lot more breath mints and spicy gum than she lets on.

3. People are allowed to obtain prescriptions for injectable things like hormones, insulin and heparin....why not lidocaine? I think part of the post-op goodie bag should contain your own personal injection kit with a day or two's supply of local anaesthetic.

4. Observation at the oral-maxillofacial surgeon's office:

As you sit in the comfortable waiting room, you see people arrive to pick up their "charges" but you never actually see them leave. That's because the post-op crowd gets to leave out of the super sneaky back door exit. I'm sure, if asked, that they would tell you that it's for your own personal sense of privacy and dignity, but's all about the bottom line. If I saw someone leave through the front door looking that way that I know I did, I probably would have made a pretty hasty retreat.

5. Even if you are driving a totally hot, brand new Mustang GT, peeling out of the Tim Horton's drive through, tires squealing, with a bunch of empty Hagen Daz boxes stuck in your spoiler is still no cooler than swaggering out of the men's room with toilet paper trailing from your shoe.

Tuesday, September 15, 2009

I realize that my blood vessels are currently pumping a vertible cocktail of narcotics through my body (Midazolam, Fentanyl and Propofol with several T3 chasers) and as such my perceptions may be a little skewed....but I'm pretty sure that these photos are an accurate portrayal of my day.