I like to call this shot "I think we will be staying in today"

Tatyanna's wish, part one...

*written version to follow

Wow, things have suddenly gotten extremely busy! I'm working on a big photo post at the moment. We are just back from an amazing three days in Winnipeg where Tatyanna had the first part of her wish granted by the Children's Wish Foundation. I have photos....lots and lots of photos, and they will be here....soon. But not all of them, because that would be mean (and my lovely satellite internet would never allow it....at least not without a good "fap'ing")

http://alberta.ca/acn/200712/22716C5120CF7-EC51-0C11-2A3AE010826CB42F.html

I find it particularly interesting that the government of Alberta in it's typical self-appreciating fashion is celebrating the creation of the new birth certificate and all it's anti identity theft features. To quote service minister Lloyd Snelgrove, “Anyone familiar with identity theft or fraud will tell you that a birth certificate is a good foundation document to build a false identity,” . If Alberta is so concerned with the potential threat of identity theft, why then did they refuse to send my daughter's birth certificate by anything but standard post? My credit card was charged on March 5th for said certificate (and we paid to have it "rushed") and we are at day 18 and counting. Vital statistics in Alberta has said that they mailed it on the 12th and are willing to do no more about it. Does regular post seem a very 'safe' method of mail transport? I've had things go missing several times to the void of Canada Post, never to be seen again. Potentially speaking, if my daughter's birth certificate were found by a less than honest person, they would then have legal I.D. for the child of their choice. How exactly are these anti-theft features going to help me now Mr. Snelgrove? Good thinking once again Alberta!

Our big dilema now is that without Lexi's birth certificate we can not get her a visa. Without the visa we don't go to China. If the necessary document doesn't miraculously appear in Tuesdays mail we will have to pay upwards of $1000 to have a new birth certificate sent out at their convenience (on the AB registries sites, you pay for rush service but they don't actually tell you how long said service will take) and then courier it to someone in Calgary to take it to the Chinese consulet and have the service rushed. Rush service comes at a very hight price. Gotta love the way places love to cash in on a crisis. Thank you Alberta for reinforcing to me why I left your province to begin with.

Yesterday was a big milestone for me. It's a little known fact that other people's children scare me.....and not just a little. I'm one of those horrible parents that always let their kids go to someone else's house but never returns the favour. I feel bad about it, truly I do. Usually once the other parent (the one on the short-end of the friend stick) hears about Tatyanna's condition, any hard feelings are gone and we can go back to the regularly scheduled routine of my child playing at their house. But, to be honest, I have never really felt good about this sort of unreciprocated arrangement. While it's true that dealing with my daughter's condition is stressful, the truth behind my never having my children's friends over is, more simply, because of my own anxiety. I seriously stress over the thought of having somebody else's child at my house for more than a couple of hours.

On Thursday, however, I decided that it was time to step out of my comfort zone and agreed to the dreaded sleepover. I made sure that that the spare sheets smelled of 'lemon and verbena' as opposed to stale linen closet, sent Trent on a quest for suitable sleepover food and ensured that both Tatyanna and Lexi were fully clothed the moment the school bus arrived.

Other than the fact that the 22 lb bag in the pantry was rice and not flour prompting a forced trip into town so that we could finish making pizzas, the whole thing went fairly well. In fact, I think I might do it again. The fact that Skylar's friend is in Keirnan's class at school, thereby ensuring that he was on his best and most mature behaviour was an added plus.

On an amusing note, Lexi was quite taken with our house guest and began to refer to her as "my sweetie" and could be found wandering around the house asking "Have you seen my friend? Where did my sweetie go?" While I found it to be quite humerous, I believe that Ali might have been slightly overwhelmed by the constant hero worship as she is an only child and has no experience with the fun of little sisters.

red wine, guitar hero and a whole lotta prayer

I've been asked several times over the last few weeks how it is that we are coping. To be honest, there is no answer to that question. As one mom who has walked this road before me said, "It's not like we have a choice. You do what you have to do." You love your child and because of that, you simply keep going, finding strength to do what needs to be done and learning to ignore the things that don't. I don't think that we are any stronger than anyone else or able, in some pre-ordained way, to handle things any better than the next person. I think that it comes down to the simple fact that most people have never been tried, have never experienced the unthinkable and therefore just don't realize the depth of the their own fortitude.

Most of the time, I try to remain upbeat but I would be lying if I told you that it is always this way. There are moments when I am caught unguarded and can feel it steal over me, wrapping it's icy tentacles around my chest. A sense of fear and loss that is so primal that the breath gets caught in my throat and the blood start to leave my head. I know what we're up against. I know what will happen if the treatments don't work, if a cure is not to be found. But, I've also seen what happens to the morale of those around me if I stumble or cracks begin to appear in the facade of strength that I've created. And so, I try to celebrate the little moments, to take joy in the small things- because if things go bad, there will be plenty of time for grief then.

Finally......I think.

It's been a rough go but thanks to the perservence of a dedicated ex-husband (how's that for a contradiction of terms)the website is up and running. It's a bit of work in progress and has been a thoroughly interesting experience. Group projects with your husband and ex....you should all try it. It's good fun.

Anyways, here's the link. Check it out!

http://www.tatyannashope.ca


If you have trouble with the link or getting the website to work in your browser, could you please let me know so that I can fix it?

Every time a bell rings....

I thought it was going to be simple. Go in, take a single photo of each child for their passport and leave. Sounds easy... right? I timed the trip for when each child should be at their relative best, plied them with the elusive gold known as a happy meal and promises of time in the toy isle and then headed to the Walmart photographer to get the necessary task done. Never did I expect that the years spent unconsciously conditioning my children would come back to haunt me. Like a pair of well trained Pavlovian dogs, every time the photographer stood behind the camera the girls would smile. Have you ever tried to convince a child, particularly a child (read: Lexi) who is thrilled with the fact that they have suddenly become a pint sized celebrity with their own personal paparazzi, not to smile? It's extremely difficult, let me tell you. Because smiling is absolutely not allowed on passport photos, Trent, the photographer and I kept the fellow patrons thoroughly amused with our antics. We tried playing "happy face..sad face.." We tried holding their lips together and then quickly ducking away. At one point, I thought I had a brilliant idea and we all started humming. It sounds like a good idea...doesn't it? I thought so too! Unfortunately, the girls did not agree. Lexi, looked us like we were completely insane, and stated singing. After all, why hum when you know the words? Tatyanna, despite her relatively chipper demeanor, was having a bad day seizure wise so when her turn came I sat, ducked below the camera's line of sight, holding on to her midsection to keep her safely on the stool while Trent and the photographer tried to work their magic. They danced around holding stuffed cats and bunnies to keep her attention and she pulled my hair and tried desparately to thwart my attempts to keep her stationary. It was not pretty.
In the end, we have photos of two girls looking kind of confused and slightly amused that may or may not pass inspection at the passport office tomorrow and photos of two parents looking completely disheveled and more than a little frazzled. I'm thinking that when the time comes to present said passports at the airport, after lugging several suitcases, carry-ons and two cranky pre-schoolers who hate to travel, the likeness will be unmistakable.

Has it really only been 3 weeks? A mere 20 days since our lives were shaken up and turned upside down; never to be the same again? I feel as though I've aged 30 years in that short time. Nothing is the same. The world is different, my perspective permanently altered. Small things are inconsequential. Moments that once seemed mundane are now carefully preserved, tucked away and hidden in the dark recesses of my mind. It's funny, everything has changed and yet nothing is different. Housework needs to be done, groceries need to be bought. Life goes on. And, even though there could be so much sadness and despair, there isn't. Our house is full of love, laughter and hope. To be honest, it's the very least we can do for her.

***

This morning we got the news we had been waiting for. I coudn't sleep. I knew the email was coming and I lay awake in the darkness of the early hours waiting for the familiar sound of the computer signalling the arrival of new mail. Although I didn't know if it was good news or bad, I wanted to read it the moment it arrived. I read the words and reread them, scarcely able to comprehend the meaning. "good news......your daughter's a suitable candidate......" We're going to China!!! I know that it's not a cure, but at the moment, it's all we've got.

perspective of the 2 year old variety

Tatyanna (gleefully sending her plush dumbo through a series of gravity defying loops and dives) - Look!! Dumbo flying!!!

Me (because I'm a mom and as such like to state the obvious and then ask dumb questions about it) - Wow, look at that! Dumbo is flying! Is he using his big ears?

Lexi (interupting with all the disgust and self importance that can be mustered by a 2 year old) - No! He has a flying mouse. (this is followed up by the "are you stupid?" look)

Hmm. Maybe we had it wrong all along. Maybe it has nothing to do with the ears. Maybe it's really the mouse that somehow imbues its magical powers upon a poor deformed elephant and gives it proxy flying abilities. I've got to say, I've never seen it quite like that before.

Randomness....

It's underway. Our massive fundraising campaign has begun. The trust account has been set up, the date for the social has been confirmed and a local printing company (Webber for you locals....please use them for your business as they rock!) has offered to print up anything that we need....for free! While I realize that it probably costs them very little, it would have cost us $250 for 250 full colour pamphlets at Staples or around $200 at a different quick print place. Webber didn't hesitate, they simply grabbed the original copy, put it on their copier, selected the best paper and told us to grab coffee or something while we waited. Trent and I kept waiting for the catch, thinking that perhaps they would want the "at cost value" to be reimbursed or some advertising or something. The fact that they just printed everything for free and then offered to do more as needed is extremely appreciated. To be honest, I'm stunned with the reaction that our situation is having on people. I'm not really sure what I expected but the willingness of people from all over to do whatever they can has left me feeling that perhaps there is some good in humanity after all.

Today I took the forms from Children's Wish Foundation to Tatyanna's pediatrician to be signed. There's a large spot for the dr. to fill in with a heading that goes something like "In what way do you feel that the patient's diagnosis is life threatening." It should be interesting to see what he writes. I'm thinking that "see diagnosis...'nuff said" should probably be sufficient. It's kind of surreal to be honest. Today, Tatyanna's had a really good day. We ran errands all morning, she played for several hours this afternoon without falling down once and is now sitting in the living room, glass of strawberry milk in hand, watching "the fox and the hound" for the bazillionth time. It's hard to comprehend that it will all just get worse. In some ways, I think that I refuse to believe it. I know what the diagnosis means. I've talked to other parents. I'm not naive to think that it won't happen. But, I don't believe in absolutes either. I have seen the impact that prayer and positive thinking can have. I'm not prepared to give up without a fight. If we lose the battle, there's plenty of time for grief then. In the meantime I will do whatever I can to help keep my little girl as happy and active as possible. Kids are perceptive and nobody can live very long without hope.

Sometimes I wonder if perhaps I should actually use the spell check feature or maybe proof read for errors before I hit the "publish" button but I never do. Sorry and thank you for being so tolerating.

Will winter ever be over? It's March already, I'm ready for bunnies and mud puddles and grass....I'll even be happy to see people wearing crocs. Even big people, who should never wear such heinous footwear.

Keirnan's teacher, whom I love (that would be sarcasm) has refused my repeated efforts to set up a meeting with him to discuss Keirnan's conduct and his negative attitude towards my son. His reasoning is that he simply too busy. When I explained to him what was going on at home and how I thought that perhaps it might be having an effect on Keirnan's behaviour, his answer was "I can see about talking to the guidance counsellor...he does have an open file with her does he not? But I can't promise anything. We have alot of kids with needs at this school and it's too hard to meet all of them." Tomorrow I have a meeting with the principal to discuss my "displeasure" with the gr.6 teacher. This could get interesting. You have made the wrong person angry Mr. C.

Trent - "Lexi, I'm going to count to 5. You'd better have stopped what you are doing before I finish counting....1.....2....." (he's a big softie. I only count to 3)

Lexi - "3.....4......6......"

Trent - "Hey!!! What happened to 5?"

Lexi - "huh? oh...i dunno"

Today I overheard her in the dining room talking to the dog. It was kind of cute until I overheard her tell him, " Winston, you are such a pain in my ass!"

Must have slept through history class methinks....

Trent and I desperately needed a break today. I'm thinking that might be slightly obvious after the last post. Since we are both big medieval/Tudor history geeks we decided to check out "The Other Boleyn Girl". While standing in line to get our tickets I overheard the young girl behind the counter explaining her take on the plot to an inquiring woman who was curious as to whether or not it was a worthwhile flick. No word of a lie, these were her very words:

"You know...it's about those two royal daughters who were....like...fighting or something. You know...it's based on that old Shakespeare play...."

That left me wondering, as we sat there watching the movie, exactly how many people sat there in shock at the ending when Mary's request for her sister's reprieve is denied and Ann gets her head chopped off by a French swordsman.

If you are a history buff, do not check out this movie as it is rife with historical inaccuracies....but the costumes are pretty.....If you are a fan of Phillipa Gregory's novel by the same title, you too can expect to be disappointed as there are very few similarities between the novel and the movie.

Until this moment, I really did have hope. Hope that maybe the hours of research would be more than fruitless distraction. Hope that perhaps one of the treatments offered in China would be able to slow the progression of this horrible disease. Hope that perhaps something miraculous just might occur. Now, I am wondering if it was just part of the naive, blind grasping that all mothers go through when faced with their child's mortality. While I do believe in the power of prayer and positive thinking, I can't change the fact that I am a realist. No child has ever escaped the outcome that follows a diagnosis of Batten Disease. To be honest, it's not the final outcome that bothers me. It's the fact that the disease works it's damage steadily, robbing the child of their ability to see, to move, to communicate. A once vibrant and active little person is left as nothing more than a twisted shadow of their former self. Dreams are cruelly shattered and hope gradually fades. It's a fate I would not wish on the worst of my enemies -not that I really have alot of those lurking around- and now I must sit here and watch my baby go through this.

While going to China to pursue the elusive chance that the progression of her disease may be slowed seems like a long shot chance, at the moment, it's all we have. I'm aware that this centre may be doing nothing more than cashing in on the desperation of people faced with insurmountable odds but how do I not try? Someday, I would like for things to be simple. To wake up in the morning and feel truly glad to be alive. To feel hope, and promise and optimism. But to be honest, I have no memory of such things. Things have been so hard for so long now that I it's like reading about them in a book and I have forgotten what living them really feels like.

It's funny though, when Tatyanna is awake and life is going on around me, it's not hard to feel positive. At the moment, she's so happy, affectionate and full of life that it rubs off on you and leaves you feeling good. It's only here in the darkness when the house is quiet and everyone is sleeping that the weight of it all starts pressing in around me.