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.

Thanks for nuthin TLC

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?

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

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.

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