"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

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?

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.

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

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....

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

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.

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.

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

Deceived

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....

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

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....

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!

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.