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?

Lexism of the day

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.....

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

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"!

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

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.

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

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

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......

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.

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.

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.