semi-coherent ramblings and such....

Too many blogs, too little time!

2011-01-10T08:59:00.002-06:00

While i'm not closing up shop here, I have found the need to redirect my energy. Although I will keep this blog up, I can be found more regularly at:

http://www.tatyannashope.blogspot.com/ - I'm attempting a 365 project this year....not sure that I will last the whole 365, but I'm going to give it my best effort

www.janellezazalakphotography.com/blog - it's a work in progress but something that i'm really excited about!

2010-05-03T15:12:00.003-05:00

I've totally neglected this blog as of late. Busy has been an understatement. I am starting to feel like chauffeur mom as I shuttle the kids to appointments, sporting events and other miscellaneous commitments. Interestingly, our lives seem even more normal for it. Tatyanna has been doing really well. Both kids survived the chicken pox and are back in school. Although it's chaotic, I kind of like it.

2010-04-19T11:05:00.000-05:00

It's strange, being the parent to a Batten kid -you go along thinking that you're really doing ok and then you get handed a paper at school to fill out and on it is the question "What do I want to be when I grow up" and it's like you've been sucker punched.....so I answered Canadian Olympic show jumping team member - I figure if we're going to dream, it might as well be big.

2010-04-06T11:51:00.001-05:00

Lexi quote of the day - "hey....wait a minute....aren't chicken pops a kind of food?!"

"Ummm, that would be corn pops sweetie.....Tatyanna has chicken pox...it's a little different"

love

2010-03-20T09:45:00.002-05:00

Definition of sisterly love - taking the time to cover your sister's eyes, because she is no longer able, before your own during the scary part of the movie- Disney's new frog princess. I wish I had my camera for that moment, it was priceless. (I may or may not have had to leave the room because I got all teary eyed.)

A key difference.....

2010-03-12T10:06:00.002-06:00

The difference between 11 & 4yr old daughters - the 4 year old watches you get ready and says "wow, mommy, you look pretty!", while the 11 yr old comes into your room, wearing your clothes and says "this looks a lot better on me.....can I have it...."

2010-03-09T20:41:00.003-06:00

Due to the sheer craziness of the last few weeks, I have been having a hard time staying caught up on both Tatyanna's blog and my own. Please feel free to check in on things here:

www.tatyannashope.blogspot.com

As soon as we adjust to this new normal it will return to business as usual over here.....I hope!

2010-02-19T20:38:00.003-06:00

Two years ago today we received Tatyanna's diagnosis of LINCL. In the time since, I have learned to become a researcher and advocate, I have become stronger than I ever thought possible. I have learned that it's ok to live in the moment, to let go of what or who is not important and to celebrate the small things. I've seen that there is light and hope and beauty in the darkest places and that sometimes the miracle you pray for is not the miracle that you receive but that they are all around you .....you just have to look -sometimes really really hard. :)

As put, rather insightfully, by one of the other Batten parents, "our children aren't dying from Batten Disease, they are living with it." I believe that if we focus on the negative then the disease wins and our losses will be far greater than the obvious. That isn't to say that there aren't bad days, that there aren't times when the pain threatens to overwhelm and the very act of getting out of bed is a supreme effort of will. I'm human, after all, there are days when my strength falters and my spirit is tired. But, I have to remember, this isn't about me....it's about a little girl with more courage and heart than I have ever seen in another human. It's about a little girl who once radiated enough energy that she almost seemed to sparkle. It's about my sweet daughter who at the end of being poked and prodded for the millionth time still had it in her to smile and want to give out hugs to anyone around. Because of her, at this moment, I choose to celebrate what is good. Even when things look their bleakest, there is still love and laughter and life.

2010-02-07T22:50:00.001-06:00

One of the first Batten parents that I "met" in the days following Tatyanna's diagnosis was Miranda. Over the months that followed we talked on the phone, exchanged emails and supported each other through what can only be called a parent's worst nightmare. We evolved from recruits, drafted by force but eager to fight, into seasoned veterans with more knowledge about "trench warfare" than either of us could have anticipated. Optimism gave way to realism and although hope prevails, neither of us is naive any longer. We know the costs, we've watched the ranks swell and mourned the losses of so many courageous kids. Kids who had to fight so hard and ultimately lost their battle. On January 17th, Miranda and her husband Neil lost their beloved Hailey to Batten Disease. She was only 7.

Although their hearts are breaking the Goranflos are committed to the fight. Their son Carter also has Battens and unless a cure is found soon, he will join his big sister long before he's ever had a chance to live. The attitude of many Batten parents is very much one of "We may lose this battle, but we will NOT lose the war" Our kids can't die in vain. A cure must be found. Please, this Valentine's consider helping in the fight. Miranda and Neil have organized a fundraising campaign. It's simple, doesn't require a huge commitment and has the potential to be very effective. For the price of a box of chocolates this Valentine's Day, you could make a difference. You could be part of a miracle. Donate $10 (or whatever) and then tell 4 people to do the same. Ask that they tell four more. And on it goes! See, I told you it was simple! For more information, please go to www.haileyandcartersdream.com. Donations can be made through the paypal link on the site.

2010-01-26T19:21:00.003-06:00

Treading rough water
Tumultuous current threatens

Sun still warms my face

***

Ok, I know I'm not fooling anyone. I'm really more of a limerick/nursery rhyme kind of girl as of late but you get the idea. I also realize that there is nothing in the picture that even remotely hints of water or currents that aren't frozen solid. This is the prairies after all, sunflare and snow was the best I could come up with.

***

And to those that periodically find my blog under the google search query of "what is Jean Batten's favorite color"....I have no idea, but I'm guessing sparkley red. :)

The Mona Lexi

2010-01-17T20:47:00.002-06:00

2010-01-12T21:01:00.003-06:00

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

2010-01-06T22:13:00.000-06:00

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

2010-01-02T18:20:00.003-06:00

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

2009-12-30T09:07:00.004-06:00

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......

2009-12-24T23:19:00.002-06:00

2009-12-22T10:51:00.003-06:00

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

2009-12-15T09:37:00.003-06:00

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!

2009-12-08T21:41:00.004-06:00

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

2009-12-06T10:33:00.003-06:00

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.....

2009-12-03T21:25:00.004-06:00

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

2009-12-01T20:53:00.003-06:00

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!

2009-11-25T12:42:00.004-06:00

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.....

2009-11-24T09:38:00.004-06:00

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.

2009-11-22T22:37:00.000-06:00

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.

2009-11-21T19:02:00.004-06:00

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

2009-11-17T10:15:00.004-06:00

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.

2009-11-12T14:42:00.007-06:00

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.

.

2009-11-10T19:43:00.005-06:00

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

2009-11-05T15:20:00.004-06:00

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

2009-11-03T20:04:00.002-06:00

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

2009-11-02T10:07:00.006-06:00

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.

2009-10-31T23:33:00.004-05:00

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.

2009-10-30T21:57:00.004-05:00

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 bad.....like 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?

Lexi: ......no......

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.

Happy Bday to a pretty awesome person!

2009-10-23T13:38:00.004-05:00

*Belated birthday post

Skylar,

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!

Love,

Mom

2009-10-22T10:23:00.002-05:00

"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.

Kid of the day

2009-10-21T10:13:00.006-05:00

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.

2009-10-15T11:21:00.003-05:00

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 C.....in 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. :)

Sincerely,

2009-10-09T03:02:00.002-05:00

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 good.....at 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. (http://www.happylookslike.com/ 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.

some colourful genetics

2009-09-28T21:44:00.005-05:00

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.

2009-09-25T10:29:00.004-05:00

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 Build-a-bear....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.

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

2009-09-23T21:03:00.001-05:00

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?

2009-09-17T09:55:00.002-05:00

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.

2009-09-16T10:00:00.001-05:00

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 really.....it'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.

2009-09-15T19:57:00.007-05:00

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.

2009-09-14T23:28:00.002-05:00

Once upon a time a naive young girl (ok...maybe that's a bit of a stretch) moved away to a city halfway across the country with her husband and 3 young children. The move was made for the sole purpose of helping the husband advance his career and the lure of significantly more money, combined with a fairly extensive benefit package made it seem like the perfect opportunity. Deciding to be pro-active with the health and well-being of her mouth our young ingenue decided to procure the services of one of the local dental offices. After conducting what she though was a thorough search to determine the best possible professional in which to trust her precious pearls she was excited to find an brand new office mere minutes from her husband's place of employment. Upon entering the building she was relieved, or as relieved as one can get when walking into a dental office, at the squeaky newness of the building and the cheerful and professional staff that worked inside. And so she began on a quest to help her mouth be all that it could be.

One year and enough money to put the dentist's children through med school, our protagonist began to have a sneaking suspicion that this dentist was not all that he was made out to be and she began to wonder if, perhaps, he had obtained his degree from one of those online programs promising a PhD and employment in one year's time. This suspicion was quickly confirmed when she showed up for an appointment to correct some previous work and found that the jovial individual masquerading as a dentist had completely bailed on his practice and disappeared into the proverbial sunset.

Fast forward 3 years later....no longer the innocent young thing that she once was, our lead is now in significant amounts of pain as the dental work done in the city has fallen apart leaving her mouth in a jagged mess of ruin. Ridiculously attentive oral hygiene has done little to stave off the damage and a qualified professional has confirmed that despite her best efforts, the previous work was not up to par and will have to be "corrected". We will used the word corrected as an umbrella to cover such procedures as extractions, bridge work, implants and whatever exactly a periodontal specialist does when they are referencing "bone surgery."

And so she begins the quest once again, a little more wary, but hopeful nonetheless, that tomorrows proceedings will finally be a brand new start.

pimpin her ride

2009-09-14T11:00:00.005-05:00

It was probably one of the more difficult transitions on our journey as parents to a child with a progressive condition. By switching out Tatyanna's stroller for a full fledged wheel chair it seemed that we were finally publicly acknowledging that this was, in fact, a battle we were losing. For a long time I would simply carry Tatyanna wherever we went. The Lightening kids stroller that we were using was uncomfortable for her and had a distinct prima dona preference for only the smoothest of paved surfaces making its usage cumbersome. But, one can only carry their growing 6 year old for so long before you realize the complete ridiculousness of the situation. Although she has yet to weigh anything more than 42 lbs soaking wet, Tatyanna's legs now dangle down to my knees and the once comfortable hip carry, is now anything but. The health of my back also seemed a high price to pay for my own personal sense of pseudo-denial. And so, with much reluctance, we came to the decision that it was definitely time to look into a more conventional method of getting our non mobile child from point a to point b and took Tatyanna's occupational therapist up on her offer to make the referral for wheel chair funding. Once at our local Medichair we were quickly given the specs on a couple of the pint sized models and took them for a "test drive" to determine their suitability for our needs. Once a decision was reached we were asked to chose a colour. I'm not sure why this somehow makes the whole ordeal verge on fun, but it did. After looking at a rainbow of hues and being assured that the chosen chair could be power coated with an entirely different colour if we wished, we decided to go with the stock orange. It seemed bright and funky - a perfect way to honour our daughter's spunky spirit. We also came to the realization that just because it's a wheel chair, doesn't mean that it has to be boring and thus we have started on "operation pimp her ride" in an effort to make it the coolest damn wheelchair a kid could ever have. Kind of a lemons to lemonade thing.

I've got to say, since we switched over to the wheel chair, Tatyanna is much, much happier! She is at a height where she isn't constantly looking up to see, her posture is better and the ride is much smoother. I almost wish we had made the transition sooner.

2009-09-02T14:27:00.002-05:00

"Do you have only half a brain and no heart? Does the idea of squashing your fellow man with zero sense of compassion or sympathy seem like fun? If you answered yes to any of these questions then a job with Revenue Canada may be right for you! Please feel free to drop off your resume and cover letter at your local ferderal office. Your conscious can be conveniently checked at the door."

Anyone else want to take a shot....since I'm already down?

Lexism of the day

2009-08-31T15:02:00.001-05:00

Lexi quote of the day after she overheard me suggest that her brother eat grilled cheese for lunch:

"You can't eat that...you're a boy!! Boys eat boy'd cheese....only girls can have girl'd cheese!!!!".

***

a day in the life.....

2009-08-30T19:46:00.002-05:00

Live journal "a day in the life" post is up:

http://community.livejournal.com/ditl/861520.html

For anyone who trickles over here from lj - The picture of my droopy faced pooch used in my title was completely stolen from a different day and was not actually taken on the specified day. After spending an eternity resizing and uploading pics on our rural internet connection I realized that I didn't have a title pic uploaded and so yanked one that I had done on a previous day. I'm not sure if it matters as it's only a title pic but truthfully, I feel sorta guilty about the whole thing.....sorry!

beauty rest

2009-08-25T10:10:00.006-05:00

Some people have the sort of puppies that can be found in calendars and on posters with witty comments and inspiring messages. These puppies make your teeth ache with their sweet faces and your heart feel warm and fuzzy all over.

When we took our Brynn home, I can't honestly say that it was because of her beautiful and well groomed appearance. One look at her floppy ears, sad eyes and belly that was obviously bloated with parasites and we were hooked....because we so needed a challenge in our lives at that moment. While I don't recommend taking home puppies with dubious histories, we were able to play fairy godparents to this Cinderella and offer her a good life. A life that included some much needed kibble and several rounds of deworming tablets. But, despite the tender lovin care, and comfy couches on which to ~~snack~~ lounge, no amount of sleep is going to make our girl a super model. In fact, when she is asleep, she becomes truly frightening.

This is truly the stuff......

that doggy nightmares are made of....

Good thing she has a winning personality....and an athletic set of "eyebrows"!

2009-08-18T08:55:00.002-05:00

Some parents get the kind of kids that yell "I HATE YOU!!!" when they are mad, others have kids that think outside the box.

Lexism of the day:

"Yah, well your hair is NOT cool.....and that should make you sad....hrmph!" add a look that could kill and some crossed arms and you will have my lovely 4 year old after I told her that I wasn't impressed with her current attitude.

an analogy kinda day

2009-08-14T10:04:00.005-05:00

In one blog that I sometimes read, grief was described as trying to go up on an escalator that is perpetually going down. Try as you might, you never quite reach the top. Some days you get higher, some days you are further down than ever before. I like that analogy, but truthfully it doesn't work for me. Perhaps it's because Tatyanna loved escalators and could spend all day running from one to another at various centres of mass commerce and I am reluctant to combine comparisons of grief with bittersweet memories. Or maybe because I'd naively like to think that someday, just maybe I will know what it feels like to be truly happy again. That I will be able to stand at the top, battle scarred and exhausted but finally at peace. I'm not at that place yet, an elusive Golconda that may never exist for me...but I need to believe that it's possible. For the moment, some days are good, some notsomuch. Good, however is a relative term. Good days are much like catching a wave over treacherous waters. You paddle like crazy against the current and when you're finally up, riding the crest, you know that the water below is deep and cold and that one false move could send you into the churning below. You try to enjoy the ride, feel the sun on your face and the exhilaration of the moment but you know that all to quickly, it's over. Before you really have a chance to savour the moment you are deposited on the beach and left staring out at the emptiness beyond, wondering if the fleeting happiness was real at all and if you will have the strenght to paddle back out there to try it all again.

Perhaps that's not the best or even most accurate comparison, afterall, I'm a land locked prairie gal with extremely limited marine experience. What do I know about oceans and waves and all that- but, it works for me.

2009-08-10T11:10:00.000-05:00

The Tatyanna's Hope website has been completely overhauled. There are still few bugs to work out as well as reloading the photo pages to increase the quality but for the most part, I'm pretty happy with how it turned out....even if it is the Betty Crocker equivalent of a website. I'm not sure though, now that it's all said and done if I could recommend the Xara web design program or not. I thought it was awesome....until it came time to actually load the site and then the praise singing turned to grumbling, which then quickly degraded into combining various words not fit for young ears. That said, it's up and completely functional. www.tatyannashope.ca

the ghosts in the closet

2009-08-06T09:47:00.001-05:00

I had good intentions of cleaning and organizing the girls closets in preparation for back to school and the necessary bulk created by cold weather clothing. I had planned to sort through the things that were no longer worn and bag them up for a mass drop off at the local good-will. It seemed like a simple task really. I was not, however, prepared for the onslought of emotions that hit when I started going through Lexi's closets. In the last couple of moves, many of Tatyanna's old clothes had been boxed up and simply put in her little sister closet with the idea that at some point, should she ever decide to grow, Lexi might be able to wear some of the hand-me-downs. Buried at the bottom of drawers or still in the packing boxes, I had completely forgotten that these things existed. It's funny, the degree to which memories can be cued by a simple article of clothing. As I held the assortment of sweaters and dresses in my hands I could clearly see the little girl who used to wear them. The effervesent little person who went through a phase and refused to wear anything but a pink leotard and a "dancing skirt", who was so excited about her 4th birthday that she had to get all dressed up for the occasion. For a moment, I was held entranced by memories that I would give anything to be able to live again. Memories that are now as painful as they are beautiful.

Instead of cleaning and organizing as planned, the clothes went right back in to the boxes. I can be organized another day.

final transmission.....for a while

2009-06-26T08:43:00.005-05:00

I've sat in front of this blank screen far too often over the last few days, I know that I promised an update but truthfully I can't do it. There simply isn't the energy. It seems that even the strong grow weary and the resilient falter and I significantly overestimated myself when I thought I could be a superhero (it's a very good thing that I didn't order the cape and tights).

Truthfully, this Batten Disease thing truly sucks and while most of the time I can stand, fist raised in defiance against the beast that is slowly stealing my daughter, there are many days when I feel completely lost in a sea of grief. The little girl I once knew is here, but she's not here and it's a reality that I am have a hard time accepting. I love my daughter with all of my soul but at the same time I miss what was. I miss the little girl with the chirpy voice and never ending energy. I miss the way she could destroy my pantry a minute flat and then move onto whatever caught her attention next. I miss the way she would make up little songs (usually about the dog and how we never fed him....untrue, I assure you) and serenade the entire playground as I pushed her on the swings.

I miss.

Seize the day! Live in the moment! Both are romantic notions but not truly realistic in the long term. At the moment, we are stuck in some sort of sick limbo. Remembering hurts. And while I smile through the tears and try to cherish the memories, the pain doesn't ease. Looking to the future hurts. I am well aware of the progression of the disease and have witnessed first hand its insidious workings. The thought of where Tatyanna could be one year from now leaves me cold to the very core. All we really have is today and for today we will go on fighting. Fighting to keep the child that we love. Fighting to make the best of a life that we never imagined or would wish on our worst enemy.

While I will go on writing, and will probably even do the back entries as promised, for the moment there will be nothing posted on this site. One of the biggest areas that I am struggling with is that of support. Over the past year I have become increasingly angry. Angry with friends that I thought would be there, angry at family that I thought should care more. Things like facebook and blogger have made it too easy to become a voyeur into someone's life and have erased the need to pick up a phone or send a note. Why call....she seems fine on facebook. Why ask how they're doing....she wrote about it last week. Friends that I had hoped would be supportive have all but disappeared and conversations have been awkward and are carefully kept to "safe" subjects. Don't ask, don't tell seems to be the general consensus and at the end of the day, it has left us feeling very much alone. I had hoped for better, was let down and now need to learn to get over it.

And so, for now I will be going underground with the hope that in the near future I will be in a better place. Until then.....

*Still not out of the hole, but it's no longer quite so dark down here....back and fore posts are done as promised.*

You can take the Lexi out of China but......

2009-06-16T10:22:00.005-05:00

It was a rainy sort of day and with not much else to do in a rural Manitoba town we decided to browse around the local mall. Lexi, being a disturbingly avid shopper for a 3 year old quickly found a shirt that caught her interest. After informing me very seriously that it was in fact a VERY nice shirt, she wondered how much it cost. After checking the tag, I informed her that the price was $16. Immediately she shot me an incredulous look followed by an exclamation of "Tai gue la!!!! How about we pay$15"

Sorry kid, it doesn't quite work that way over here.

2009-05-15T01:00:00.002-05:00

Although I can appreciate the peace and tranquilty of rural life, coming home to near freezing temperatures and constant drizzle was more than a little harsh. It's hard to believe that a few short days ago we were in Beijing, sitting on a patio near one of the markets enjoying a warm evening away from the hospital. This return to reality seems to be giving us more turbulance than the flight home and a feeling of melancholy has set in deep.

2009-05-11T20:54:00.003-05:00

I truly suck and I aplogize, to those who come here regularly and have been disappointed with the lack of posts, i promise to make up for it very quickly. I have a multitude of back entries from our time in Beijing ready and waiting. I just need more than a 2 minute block at the computer in order to get them up. For now I will leave you with the final post from Tatyanna's website and a promise for many entries and a few photos in the next week or so. :)

May 11 - As I type this entry, the suitcases are stacked against the wall, waiting for the last of the laundry before they can finally be closed. The dr. has been in with the meds that Tatyanna will need to continue and has authorized the removal of her IV. It's official, we are going home tomorrow. Truthfully, this time I don't have the eager sense of anticipation of last year's departure. While I miss my family and home, the break from reality has been a much needed reprieve. For a few moments I am allowed to have hope, to believe that we can fight the demon that is Batten's. At Tiantan Puhua, we are surrounded by people who want to try, who work incredibly hard and believe that they can make a difference. The results of the last few weeks have far exceeded our expectations, I saw my daughter walk across the room, unsteady, but completely unaided, I heard her say “love you” as she gave me a hug. Those moments alone made the entire trip worth it. To all who have helped make this trip possible and supported us on our journey, we thank you from the bottom of our heart.

2009-05-10T22:05:00.001-05:00

Because nothing says "I love you" and "Thanks for being such a great mom!" like a velvet covered box full of Buffy. It's kind of sad how giddy I am with the anticipation of watching 144 hours of Buffy...give or tak a couple of minutes.

2009-04-30T09:39:00.003-05:00

In these tough economic times it's important to follow the "3 r's" a little more closely. Buying products that allow for versatility, and are easily re-used can easily help to keep a little more change in your pocket.... and no one seems to have mastered the art of that 2nd "r" quite like the local silk store. Finally, a shirt that the whole family can enjoy:

from the very smallest member

to the largest

Easter eggs....

2009-04-12T05:56:00.000-05:00

Every day we order pretty much the same thing for lunch...some sort of meat, some sort of vegetable and jidan chao fan (egg fried rice). Not exactly adventurous but with 2 little kids, one of whom has certain dietary requirements, playing it safe is sometimes the way to go....at least at the beginning of our trip. Everyday at some random time before lunch, the specified food arrives. We generally request 1200 for delivery but in reality it may appear anywhere from as early as 1045 to 1215. See, there is an element of adventure after all!
On this particular day though, things got a little mixed up....slightly lost in translation and our staple jidan chao fan turned into this:

Truthfully, I have no idea what exactly it is, how the eggs were turned a purplish brown colour or what turned them into a jelly like consistency. Trent and I thought that it seemed a rather fitting mistake given the nature of the day, but the kids? They failed to see the humour.

2009-04-07T02:51:00.000-05:00

We are finally here in Beijing! I'm not sure whether I was more excited that the temperature was 27 C when we landed with not a snowbank to be seen or the fact that we survived another landing at the Beijing airport. I have no idea what it is about that landing but it always seems precarious at best. There were actually audible gasps from a majority of the passengers during a couple of moments. Fortunately the landing was even worse on our first trip so I think that I managed to pull it off looking calm and collected.....white knuckles aside.
Once we arrived back at the hospital we were greeted with some excitement from the staff that remembered us from our first trip. I've got to say that it was really nice to come back to a familiar place and within the first hour we were off to the corner store to pick up the kid's favourite snacks and drinks. It's funny, it's been an entire year since we were last here but it doesn't feel like more than a week or two. Here's hoping that the girls will settle in and adjust to a 13 hour difference quickly!

2009-03-20T09:27:00.004-05:00

It's funny how you can be both excited about a trip and dreading all that it entails. In early April we will once again be making the trip to Beijing for a second round of treatment for Tatyanna. Initially our plan was to follow her original doctors to the new hospital that they have recently established. Lured in by the idea of a potential new treatment involving a gene therapy component as well as the shiny newness of the facility, it was an easy sell to a set of desperate parents. Then, as it so often seems to, the proverbial rug was yanked from beneath our feet and we were left wondering if we had made the correct decision after all. The lack of information regarding the new therapy was disconcerting and logically it didn't add up. My slightly unused scientific mind finally started thinking of the right questions and when the answers didn't match up to our satisfaction we really started to wonder if we had made the right choice. After several conversations with respected people in the Batten's community we decided to completely alter our course of action and will be taking Tatyanna back to Tian Tan Puhua. It was not an easy decision but for the first time in the last month, I feel good. All of a sudden there is a sense of peace that things are the way they should be. We know the treatment protocol at Tian Tan and we know the outcome. It's not a cure but the changes that we noticed in Tatyanna were substantial and it went a long way to increase her quality of life over the last year. We are familiar with the staff and the surrounding area. While I agree that there is a time when you should push the envelope, I don't think that for us, this is that time. There's a huge difference between a viable working therapy and something that is still highly experimental. I'm all for trying something new if it makes scientific sense but the new therapy just didn't fall into that category. I do however strongly believe that gene therapy will ultimately be the cure for Batten Disease, I just don't believe that anyone has that cure yet.

Farewell old friend, I'll see you at the bridge.....

2009-03-11T21:53:00.005-05:00

Sir Winston of Deebee - August 31 1999- March 10 2009

Although we have known for some time that this day was coming it does little to ease the heartache that we are all feeling. The house is now too quiet, the air too fresh and the sunny patch of carpet, too empty. Much loved, forever missed.

#6

2009-02-28T14:29:00.000-06:00

Happy Birthday my girl!!!

2009-02-10T21:28:00.002-06:00

In a blink of an eye my daughter has been transformed from someone who looks like they should be playing an urchin child in a production of Les Miserables.....

to an extra in a sequel to Joe Dirt.

I'm still not sure whether to laugh or cry and I have a hard time looking at it without cringing, just a little....but I've got to say, we have been having a good time stocking up on funky hats.

2009-02-10T14:35:00.001-06:00

"I DON'T want to go to my old empty house.......and I DON'T want to go to my new messy house........I'm just going to stay here.......AND SIT ON MY ASS!!!!!!!"

In case you were wondering exactly how the kids were adjusting to the move, the above conversation, which happened to take place in a main isle of our local shopping mall, should sum it up quite nicely for you. I'm not sure what the proper parenting response to that little scene is but it probably would have been lost on me as I was trying too hard not to laugh to make any form of speech possible.

If you give a kid some scissors......she'll give herself a mullet

2009-02-06T14:36:00.005-06:00

There are certain things that are fairly concrete on my list of "Stuff I don't want to see on the floor when I walk in the house." (doesn't everyone have that list?) Large tufts of hair are one of them, making the list somewhere after "things that should be found inside the body" and somewhere ahead of "various foodstuffs." I've got to admit that initially my reaction was one of horror and I found myself wondering if our feline companion had suddenly satisfied her craving for cavy. As a ran to the guinea pig cage and heard their excited squeaks as my footsteps fell in the general vicinity of the fridge I was filled with a definite sense of relief. That is until I noticed that there was even more hair in various tufts all over the kitchen floor. Upon closer inspection, I realized that a majority of the hair was in fact human and could only belong to one member of our household. This particular individual could also be referred to as a repeat offender and has sat through more than one lecture on the requisite qualifications of salon personnel. Apparently these discussions fell upon deaf ears.

I felt at this point that it was fairly safe to assume that the darker black and grey chunks probably came from her tabby side kick and cringed thinking about exactly what the cat had to endure over the course of the evening's cut-a-thon. More than a little uneasy at this point I continued to wander the house in search of the guilty party. Then I saw her, standing under the glare of the hallway light with at distinctly guilty looking grin plastered on her face. To be truthful, I wasn't sure if I should laugh or cry. My darling little girl with the long, wavy locks had given herself a mullet.....and done such a good job of it that it looked fairly professional. I wouldn't say that I'm a particularly superficial person, and I do have a strong belief in the importance of being able to express yourself, but at this point, I kind of felt sick. I stood there, dumbfounded, words eluding me as I realized that for the next while, every time we take her out in public it will actually look like we wanted her hair to look like this.

Because, everyone wants to have Billy Ray's love child, no?

2009-02-01T17:24:00.002-06:00

She sat on my lap, body nestled against mine, dark eyes wide in the waning light of the day. The room around her was in a relative state of chaos with moving boxes stacked in precarious towers against the wall and the remainders of a hastily consumed meal strewn over the counter tops. That's when I noticed it. Something so small that it was barely perceptible. If I had been a different parent in a different time, I probably wouldn't have given it a second thought. As the room grew increasingly dim, her eyes had more and more difficulty trying to focus. The pupils would constrict and then dilate, trying desperately to hang on to a view that was proving elusive.
With a sinking feeling, I was reminded once again, exactly why we were making this move in the first place.

2009-01-17T08:21:00.006-06:00

I'm feeling more than a touch angsty as of late and as such have avoided the public blogging realm. Certain events have left me more upset than perhaps they should and I truly do not want to offend the wrong people. Self-imposed censorship isn't ideal, but can be a good thing once in a while....instead I will leave you with my latest project. It's creation has completely kicked my ass in an emotional sense but it was something that I had wanted to do for quite some time. I'd love some feed back or constructive criticism so feel free to let me know what you think.

*Sorry, couldn't get the video to upload. My current connection speed is somewhere between paint drying and grass growing. I will try again later when I drag the laptop into town. Until then, the youtube link, complete with typo, will work just fine.*

http://www.youtube.com/watch?v=1oMbOKFB4os

2008-12-26T05:54:00.004-06:00

I have a hard time with posts like that made last night. Usually I hit the delete button within moments of making the entry and no one is the wiser. Parenting a child with a terminal illness is complicated. There are good days and there are bad days. While the pain never goes away, you learn to live with it. You look past it and learn to function in an altered sense of normalcy. With Batten disease, the grief process doesn't end. Every time your child loses another skill or ability, it starts again. There are days when the sense of loss is so profound that it's almost tangible. I miss my daughter and yet she is here beside me. I miss the little girl who used to spend hours on the escalators at the Edmonton mall before it opened in the morning. I miss her never ending energy and sense of fun. I miss the way she would lug all of her stuffed horses around the house and had them named according to colour or size....white white, brown white, bigger.....In some ways, I feel guilty for feeling that way. Although the Yanna of the past is gone, I appreciate and cherish the little girl that's still here. In many ways, she's still the same, only a more muted version of her previous self. She is still loves her horses and watching Dora, she still has her infectious giggle, strange sense of humour and a hug for everyone around her.
For me, in order to stay afloat, I have to sink once in a while. Last night was simply a very bad night after a long string of not so good days. Today,without the weight of holiday expectations, perhaps things will be different.

Ghosts of Christmas past....

2008-12-25T20:16:00.004-06:00

It echoes in the dark corners of my mind, the clatter of small foot steps on the hardwood stair case followed by an excited chirp, "Mama!!! Happy Birthday!!!!" She was so excited. Her grandma from Alberta had just arrived, it was Christmas 2007. I have relived this moment a thousand times throughout the holiday preparations and as much as I try to feel the warmth of a happy memory, it cuts like a knife and leaves my soul bruised and aching. Tatyanna was always the life of a party and could light up a room with her effervescent demeanor. Christmas to her, was just a giant birthday party in which everyone got to celebrate. When the awaited morning dawned, far to early for my liking, she eagerly opened her presents and spent the remainder of the day blissfully playing with an varied assortment of horses and ponies. Her seizures were under control, the dr.'s reports had come back clean and we were optimistic that the worst was behind us. This year, the festivities and the days preceding were a little more subdued. While I have tried desperately to put on a positive face and feel grateful for the things that I do have, I can't help but grieve for that which we have lost.
Emotionally, I am raw and I feel guilty for it. 10 minutes into the requisite family gathering I wanted nothing more than to crawl back into bed and pass on the day entirely. Gifts were opened, conversations happened but truly it was nothing more than a performance worthy of an Emmy. At one point one of those mass-sent Christmas letters was read in which the author had prayed for someone to come and do the initial training on several of her family's pricey warmbloods. God had, apparently, delivered in form of a delightful young family from Australia and the problem was duly solved. I know that no harm was meant in this telling and that it was supposed to be an inspirational sort of tale but it left me reeling. What am I doing wrong in that my simple prayer for a day in which my little girl is not wracked by seizures goes unanswered. How is it that a $30,000 horse takes priority over a 5 year old child? All I wanted was Christmas. The fact that we have no idea what condition Tatyanna will be in by next year, made this one fairly important to me. Unfortunately, any fun Tatyanna had was marred by a continuous stream of small seizures and significant ataxia. By afternoon, she was well acquainted with grandma's frozen peas and had a face reminiscent of a match-losing pugilist. The day was truly exhausting both physically and emotionally and I am truly grateful for these moments where the house is relatively quiet and free from chaos.

I apologize for the less than jolly tone of this post and do wish you an honest Merry Christmas and a safe and happy holiday season! I promise to stop wallowing.......very soon.

Things you'd prefer not to hear from your child....all in one day

2008-12-11T20:09:00.000-06:00

1. canyoutakemepottycanyoutakemepottycanyoutakemepottycanyoutakemepottycanyoutakemepottycanyoutakemepotty.....nevermind
2. I'm a big girl...i fixed it all by myself....with grampa's tools!
3. Wanna do magic mommy? Come and find the turtle....he disappeared!!!
4. Come and see what happened.....there's POOP!!!! It's all over the kitchen floor!! I think it was Winston.

Life with a 3 year old, it is anything but boring.

2008-11-24T13:37:00.003-06:00

For a couple of pigs who were left homeless because they were too much work, I'd say they're living the good life now. See, they're lounging around their tiki hut, waiting for me to bring them fruity drinks with umbrellas. I have turned into their own personal cabana boy...girl....whatever. Fortunately, their funky new abode is completely edible so the role will only last as long as the house does.

2008-11-18T21:42:00.004-06:00

Sorry for that unannounced hiatus. For now, I will leave you with this image. It sums things up rather nicely, I think.

Deceived

2008-10-10T21:44:00.002-05:00

For a brief shining moment, I allowed myself to have a sense of hope, to dream. For a brief moment, I allowed myself to reach out and grasp that which I thought was gold, only to find that it was nothing more than ash. Now there is only a renewed sense of emptiness as I stand here, hands scorched and watch it all blow away in the wind.

sounds of household renovations....

2008-09-23T16:06:00.002-05:00

Trent : "ARGH! What a disaster.....this is f@%*ing stupid!!!!!

Lexi: (finger wagging) "Daddy, you really shouldn't say stupid. Say 'stinky' "

Did I ever tell you that I don't like painting. I used to love it. Now, with 4 kids and a million other things to do, notsomuch.

Sir Winston of Deebee

2008-09-07T12:36:00.007-05:00

Cost of one Great Dane puppy in 1998 - $850

Cost of mileage to the airport, plane ticket from Halifax, Nova Soctia for said puppy - $250

Cost of vet bills, kennel fees, couch replacement X2, cleaning supplies (did you know danes can even get slobber on the ceilings?), truckloads of kibble and giant sized bones - +$5000.....i don't even want to think about the exact amount...

Cost of 9 years of faithful companionship and unwavering affection - PRICELESS

Happy 9th Birthday Winston! I can't imagine our family without you!

Because I live in a house full of little people who love any excuse for a birthday party, we even had a celebratory party complete with shiney paper hats and cake. Normally, I'm not the type of person who would have a birthday party for a dog but I was easily persuaded for this occassion. After all, it is extremely rare to be blessed with 9 years of ~~slobber~~ ~~hair covered carpets~~ loyal, giant-sized companionship. Even at his advanced age, Winston is still able to play a good game of fetch (with a soccer ball) and sneak into the kitchen with the hope that someone has left the cupboard doors open or some tasty morsel left on the counter.

I'm in the process of digging out some of his "baby pics" for a future post.

worthy advise....

2008-09-04T18:23:00.004-05:00

If, on the rare occasion that you are allowed to sleep for an uninterrupted 15 hours and if said "luxury" comes at the expense of your significant other, it's probably not a good idea to greet the day by stating, "man, I'm still tired!!". This is particularly true if while you were sleeping, your wife not only cleaned up the supper dishes, did the bedtime routine times 4, dealt with a cranky and willful 3 year old who felt that sleep was for the weak and then woke up with child #3 at 4:00 a.m. and proceeded to watch colourful cartoon characters cavort across the t.v. screen until the sun made its appearance on the horizon. The fact that you managed to relocate to the couch in the living room, blanket and pillow in hand and then return to your previous coma-like state whilst the house was cleaned and games of My Little Pony were played around you, wasn't really all that helpful. It's a good thing that I love him like crazy!

2008-08-30T21:43:00.003-05:00

I know that this is making the email rounds but for those that haven't seen it, this list is too funny not to pass on.

Here are the top nine comments made by NBC sports commentators so far during the Summer Olympics that they would like to take back:

1. Weightlifting commentator: "This is Gregoriava from Bulgaria. I saw her snatch this morning during her warm up and it was amazing."

2. Dressage commentator: "This is really a lovely horse and I speak from personal experience since I once mounted her mother."

3. Paul Hamm, Gymnast: "I owe a lot to my parents, especially my mother and father."

4. Boxing Analyst: "Sure there have been injuries, and even some deaths in boxing, but none of them really that serious."

5. Softball announcer: "If history repeats itself, I should think we can expect the same thing again."

6. Basketball analyst: "He dribbles a lot and the opposition doesn't like it. In fact you can see it all over their faces."

7. At the rowing medal ceremony: "Ah, isn't that nice, the wife of theIOC president is hugging the cox of the British crew."

8. Soccer commentator: "Julian Dicks is everywhere. It's like they've got eleven Dicks on the field."

9. Tennis commentator: "One of the reasons Andy is playing so well is that, before the final round, his wife takes out his balls and kisses them... Oh my God, what have I just said?"

It doesn't matter how many times you re-read it, it's still funny.

Thanks for nuthin TLC

2008-07-25T21:21:00.003-05:00

TLC network once had this helpful commercial that informed the public that merlot and email do not mix. Did it once say anything about red wine and sewing machines? No, it did not. Why do I always have to learn things the hard way?

2008-07-18T12:33:00.002-05:00

We are only part way into the month of July and already my older two kids are fighting incessantly.....over stupid things like who learned to tie their shoes the youngest and how this "prodigious" behaviour somehow entitles them to a higher plane of intelligence. While this heated debate was going on, my now 3 year old was sitting between them looking at one, then the other and singing "NaNa Na Na NaNa.....you are stupid....." When I prayed for patience, I didn't mean that I wanted the virtue beaten into me. It's going to be a long long summer.

A royal birthday

2008-07-15T22:48:00.003-05:00

A letter to my daughter, Princess of things Crocodilian,

It was hard coming up with a cake befitting a person of your status. Not being briefed in royal etiquette, I was unsure if such a cake would be appropriate or sufficient. I appreciate the show of excitement that you displayed upon presentation of the cake and so I will assume that it was up to par. I do apologize again for my attempts at getting you into some sort of conventional clothing for your party and appreciate the time that you took in explaining that Crocodile Princesses wear pajamas to parties and not pretty dresses. I had been previously unaware of this fact and consider myself so much more enlightened now. Perhaps I will spend some time in the local library, learning the protocol and social nuances associated with royalty such as yourself.

Happy 3rd Birthday my girl! Your unique perspective on life has kept us highly entertained and I am truly looking forward to watching you develop into the awesome little girl you are becoming.

Love Mom

-PS If you are the Crocodile Princess, does that make me Queen?

*I have absolutely no idea where she came up with the Lexi, Crocodile Princess moniker. She began addressing herself as such out of the blue one day while we were in China and it has stuck ever since.

2008-07-10T22:35:00.000-05:00

Not quite a man but quickly leaving boyhood behind! Happy 12th birthday buddy.

2008-07-09T21:50:00.000-05:00

If I could look through a window into the past, one of my first and least obvious choices would be a balmy July night exactly 12 years ago. I stood surrounded by friends in the waning light of the day. The night air was filled with the sounds of skateboards grinding against concrete and excited cheers when a difficult trick was landed. I stood off to the side, in the dim light offered by a nearby building. A game of hacky sac was going on and I although I made a half hearted attempt to join in, my thoughts grew increasingly inward. Between the growing pain in my back and side and the burgeoning intuition of a new mom, I knew that this would be the last night of it's kind. The last few moments of a carefree existance where I could be secure in the knowledge that I knew everything and was on top of it all. Wow, do things change!

Just like dad.....sorta

2008-07-08T22:41:00.001-05:00

Same pig....different day

2008-07-06T01:07:00.003-05:00

2008-07-05T23:26:00.003-05:00

I find them all over the house. Names and phone numbers scrawled hastily in a variety of colours on scrap pieces of paper. Sometimes there is corresponding information but more often than not, it's just a name. Every time I get a call from a person claiming that they can "heal" my daughter I feel compelled tor write their name down. Sometimes I even take them on a merry hunt throughout my house while I attempt to track down a pen that can actually get the job done, carrying on a running dialogue as we go on the quest together, just so that they know I'm sincerely looking for some sort of writing utensil. The strange part is, for most of these people, I know that I will never pick up the phone to call them. It's not that I don't believe in alternative healing methods....although to be honest, I really can't see how "plunking some numbers into Tatyanna's energy fields" is going to somehow miraculously make her better, it's because every other parent with a Batten's child has gone down this road before. They have all grasped desperately at what ever hope is available, spent thousands of dollars on miracle herbs and taken their kids for Reiki and ionic footbaths and they just don't work. Despite this, I do appreciate the effort it took for these people to pick up the phone and make the call. Particularly since I have yet to hear from people I once considered to be friends. Most of them seem genuinely concerned and really believe that their products/treatment will work. I can appreciate this and so, I take the time to write their phone number down, as if in some unspoken way this makes my gratitude more real, more tangible. There's also a part of me that believes that they will somehow know that I'm not actually writing the phone number despite my claims to the positive and all sorts of unpleasantness will then ensue.
The only real problem with this practice is, I'm left with remnants of paper around the house and have no idea if the number is something important or something that is safe to toss in the recycling bin.

2008-06-27T14:47:00.003-05:00

If Chanel can have a perfume called Chanel No. 5 then I believe that we inadvertently painted the bathroom Behr Brown No.2. Although I'm of the belief that it's not the best colour choice for a bathroom given it's similarity to the obvious, perhaps some might find it inspiring?

First Pet

2008-06-24T10:03:00.003-05:00

Guinea pigs were never really on my list of things to own. I'm more of a horse/big dog kind of person. I like it when my pets are large enough that becoming inadvertently squished or lost to the duct work mazes isn't even a remote possibility. But, being an open minded sort of person, or maybe simply a sucker, I thought that we'd give it a try. After all, China was never on my list of places to visit and I would go back there in a second so maybe the same applies to small rodent like animals?? The offer was too good to pass up really. 2 guinea pigs with all the necessary accessories, bought by an individual who was unprepared for the work, for free with an "if it doesn't work out, bring them back" clause. Although Skylar was quite willing to claim and accept responsibility for both guinea pigs, the moment Lexi saw them, she was completely enamoured....even though they aren't the chinchilla's that she has been asking for. She now wakes up in the morning and starts the day by saying "I need to go see the guinea pigs....they aren't chinchillas you know." *sigh* Somehow I don't think that there's any way those pigs will be going anywhere. Congratulations Linny and Henry, you have just found your forever home. And I have just increase my workload 2 rodents worth. It's a good thing they're kind of cute....even if they aren't horses.

It's been a while....

2008-06-22T22:24:00.001-05:00

I used to really enjoy blogging. My semi-regular posts were often light-hearted and I tried to write in a way where you could see the humour in what at the moment seemed like a pretty bad day. I enjoyed the occasional comments from readers and felt good when people said that what I had written had made them laugh. I enjoyed making people feel good. I haven't posted much in the last few weeks and there is a good reason for it. Lately, I don't feel good. The "funny" is all used up. In it's place is just a hollow emptiness that doesn't seem to fade. I knew that this phase was bound to happen, I just wasn't sure when. I'm tired of always having to be strong. I'm tired of hearing that I'm an "inspiration" and that what we did was heroic. I'm tired of looking for the "small blessings" and of treasuring the moment because I don't know if there will ever be another one. I'm tired of trying desparatley to keep my family functioning while running frantically between meetings and therapy appointments and the housework piles up and I am left to fall in to bed exhausted at night. I'm tired of being the anchor to too many ships. I'm tired of being tired.

I watched a mother walk down the bike path yesterday. She was pushing a jogging stroller and walking with a purposeful stride. One half block behind her was a 3 year old boy. He, apparently, hadn't gotten her memo that they had an agenda and was meandering aimlessly along the path dragging a stick along the ground and watching the path it made in the damp earth. His mother had obviously taken the time to carefully choose his brand-name clothes and sneakers but couldn't take the time to join his world as they walked. I wanted to shake her and point out exactly what she was missing. I see parents everywhere with young kids and a piece of me wants to go back to the moment when my life was good. A moment when I remembered what it was like to wake up in the morning and honestly feel a sense of excitement about the day to come.

Thursday, Tatyanna will be getting her "wish pony". As a horse-crazy mom who wanted nothing more than to have her daughter share her passion for the equestrian world, this should be a momentous event. But instead of joy, it will be bittersweet. My daughter's pony is a result of a wish made to the Children's Wish Foundation. My dreams of teaching her the elements of basic riding and cheering her on at her first show are gone. Instead I will try to find joy in her smile as I walk beside her and she goes for a walk on her pony; all the time praying that she will have another day to go for another ride.

I debated deleting this blog. I know that I have picked up readers(read: family) who can't handle negative emotions.
But, I changed my mind. This is my reality. It's not sunshine and roses. The reality is, my 5 year old daughter has Batten Disease and as such I will have to look for light in the darkness and smile even though my heart is breaking. It will be a bumpy ride, so if you aren't willing to hang on, it's probably best that you get off now.

On a lighter note, TV seems to have taken a sudden liking for using sumo wrestlers in its advertising. I can appreciate this as I can't seem to watch sumo wrestlers without smiling, just a little. It's probably horribly unPC, but this time, I'm ok with that. Sumo wrestlers make me feel better. So there.

Heres lookin' at you kid

2008-06-14T22:58:00.003-05:00

This is one of those moments where I, thinking that I had taken a nice "memory photo", put the camera away a few minutes too soon. Right after this shot was taken, Tatyanna, in a moment of unbridled Bovidae adoration, leaned forward, placed both hands on either side of the goat's face and planted a big wet kiss on his lips! Comical does not even begin to describe it. I "kid" you not. Umm...I'll stop now....

2008-05-29T22:08:00.002-05:00

We are home!!!! I will update, there will be back entries from my keyboard free period, and photos...but not until the kids are no longer sick with the minor plague that they brought home with them (souvenirs anyone?) and the jet lag has worn off. I thought that we would adjust better this trip to the time difference but 430 this morning found Trent and I making sandwiches in the kitchen.

Gradients of relaxation while travelling....

2008-05-28T01:24:00.000-05:00

Bejing airport....notsomuch

Vancouver airport....perhaps a slight improvement?

Winnipeg, Sheraton 4 points hotel.....Ahhh....

And then there were 6

2008-05-27T10:30:00.001-05:00

When we left Canada as relatively unseasoned and unpracticed travellers we had a modest 3 suitcases plus carryons in tow. Today, after spending 7 weeks away, we will return home attempting to juggle 6 suitcases. Add that to the carryon baggage and 2 small children and it should be an interesting kind of day. Suitcases...they are like rabbits.

a minor inconvenience.....

2008-05-23T21:55:00.000-05:00

I have come to the conclusion that the keyboard is the most under-rated component of the laptop. Much discussion is given to CPU's, motherboards and the like, but one becomes quickly aware of just how essential a working keyboard is when they are stuck in a foreign country and said component decides to "take its own vacation." Due to our recent mechanical difficulties, this will be the last "in type" update before we arrive home. I will try to provide you with some photo updates over the next couple of days so please feel free to fill in your own stories and captions to go with the pictures. It will probably be more entertaining! I can access email at all the usual addresses but since any responses will either have to be typed on the iPod (and sent when it can get a connection, which is rarely) or by painfully cutting and pasting the letters from other sources (which I have done and can't say that I enjoyed), the chances of you getting a reply will be fairly small. I feel bad about this, really I do and want you to know that I truly appreciate emails and will get back to you as soon as I can.

The good news is, we get to go home early!! Tatyanna had her last injection on Tuesday and as such, we are able to go home on the 27th of May. Because we were expecting to have another 10 days, the weekend will be filled with last minute sight seeing and packing up our room. The girls are more than ready for the trip back to Canada and when Lexi was told that we would be going on a bus ride to the night market this evening, her response was a very emphatic "NO...I'm going home on a plane." To which Tatyanna added "and go to Build-a-Bear!"

2008-05-18T06:47:00.003-05:00

Since making a list of thing that I miss would pretty much be stating the obvious and go on for far to long, I thought that I would change things up a little.

Things that really can't say that I've missed:

1. It has been approximately 6 weeks since I have read an article outlining the exploits of Britney Spears or discussing the many children of Brad and Angelina or wondering about the whereabouts of Suri. I'm ok with this. My world has come not come crashing down without hearing the latest celebrity gossip. In fact, I think it might be a better place. I will however be honest and admit that there is fairly good chance that I will pick up a People magazine for the flight home. 15 hours of intercontinental travel with 2 small children is hardly the time for intellectually stimulating reading.

2. Springtime in Manitoba is bi-polar at the best of times. I can honestly say that I can do without the 2 months of sending the kids to school in T-shirts one day and parkas the next.

3. Filling the truck up with gas. Taxis are plentiful and super cheap in Beijing. To hire a driver to take us to the great wall, a 2 hour drive, wait around for us until we are ready to leave and then drive back to the hospital, the cost is 700 RMB. That works out to about $100 CAD. Most of the time we simply load Tatyanna's chair onto the bus and go wherever we need to go, for the unbeatable price of 1RMB.....that's $0.14 CAD.

4. Paying the sticker price. It's significantly more fun to ask the price and then see just how low you can actually get the item for. Trent and I are far too competitive though and it's almost become a game to see who gets the better deals at the end of the day.

5. Meal planning. Once in a while I sort of miss cooking, but then I just sit down until it passes. When things are chaotic, it's kind of nice to wander down to the cafe, request the "lunch special" and know that it's going to be both healthy, and fairly decent tasting. This however doesn't apply to fish. When Sam comes to the room wondering if we would like fish for dinner, the safest response is to just say no.

6. As much as I love my dog, that warm, fuzzy feeling does not extend to the various substances that he tends to produce. Great Danes are large dogs and as such produce large messes. On a bad day, they can leave a slime trail that would make a snail green with envy. There was nothing in the "Great Dane Puppy Guide" that gave any indication that I would one day be cleaning slobber from off the ceilings.

lost in translation

2008-05-15T21:15:00.003-05:00

It's funny but I don't remember these discs having this title when I bought the same versions in Canada.
For an even funnier and much more extreme example of "interesting" translations,please go here: http://www.rahoi.com/2006/03/may-i-take-your-order/ We have actually seen menus similar to this on a much smaller scale. It keeps things interesting.

It's almost kind of sad how excited we got to see/hear Tatyanna counting again. Prior to our trip to China, I can't remember the last time that she was able to do that.

2008-05-11T02:17:00.000-05:00

One year ago, Trent and I stood on the edge of a battle field. Unaware. Oblivious. We naively made plans for a future that was never meant to be and honestly thought that things were starting to look up. Within a month we found ourselves in the very trenches of a battle that we were not prepared to fight.

No one said that parenting was supposed to be easy but some mom's really get a raw deal. To those mom's this is my toast to you, because you truly deserve it. (Feel free to grab the beverage of your choice at this point: juice...water...a nice south African pinotage...tequilla...don't worry about finding the glass, it will be less to wash later)

Here's to all the mom's who have knelt at their child's bedside whispering fervent prayers for a better day

Who are too scared to dream for the future because all that really matters is that they made it through today

To the moms who have held their crying child, stroking the tendrils of damp hair away from their cheeks and wondering if the tears would ever end

and to those who long to hear their child utter a single sound and know that even a cry would be like the sweetest symphony

To the moms who could play connect the dots with the IV scars that cover their child's hands and feet

and know more technical terms and drug interactions than your average med student.

To the mom's who could tell you the days of the week without looking at a calendar....it was written on the weekly pill dispenser, and isn't today PT...it must be Tuesday...

And to those who drive wistfully by playgrounds, wanting nothing more than to spend an afternoon pushing their child on a swing or making castles in the sand.

To the mom's who refuse to quit, who keep pushing, knowing that it isn't because they are particularly strong or even because it's something they want to do,

But because they have to, there simply is no other choice.

And to the mom's with experience, who's babies have long since grown up and have children of their own

Who know that while this isn't their battle, they are there to provide an ear to listen and a shoulder to cry on.

Here's to the moms who have endured more than they ever though possible and know that there is more yet to come

May you find the courage and strength to face each new day and never stop looking for the small miracles

To all of you, Happy Mother's Day.

semi-coherent ramblings and such....

Too many blogs, too little time!

love

A key difference.....

The difference between 11 & 4yr old daughters - the 4 year old watches you get ready and says "wow, mommy, you look pretty!", while the 11 yr old comes into your room, wearing your clothes and says "this looks a lot better on me.....can I have it...."

The Mona Lexi

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

passive-agressive ranting

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

Shopping that you can feel good about

Parenting law #45433

A cautionary parenting sort of tale.....

snow day

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

complete randomness

.

enough to spare

Fence sitting

Happy Bday to a pretty awesome person!

"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"

Kid of the day

some colourful genetics

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

pimpin her ride

Lexism of the day

a day in the life.....

beauty rest

an analogy kinda day

the ghosts in the closet

final transmission.....for a while

You can take the Lexi out of China but......

Easter eggs....

Farewell old friend, I'll see you at the bridge.....

#6

If you give a kid some scissors......she'll give herself a mullet

Ghosts of Christmas past....

Things you'd prefer not to hear from your child....all in one day

Deceived

sounds of household renovations....

Sir Winston of Deebee

worthy advise....

Thanks for nuthin TLC

A royal birthday

Just like dad.....sorta

Same pig....different day

First Pet

It's been a while....

Heres lookin' at you kid

Gradients of relaxation while travelling....

And then there were 6

a minor inconvenience.....

lost in translation

"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