some colourful genetics

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

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

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

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?

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.

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.

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.

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

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.

"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?