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.

Because nothing says "I love you" and "Thanks for being such a great mom!" like a velvet covered box full of Buffy. It's kind of sad how giddy I am with the anticipation of watching 144 hours of Buffy...give or tak a couple of minutes.

In these tough economic times it's important to follow the "3 r's" a little more closely. Buying products that allow for versatility, and are easily re-used can easily help to keep a little more change in your pocket.... and no one seems to have mastered the art of that 2nd "r" quite like the local silk store. Finally, a shirt that the whole family can enjoy:



from the very smallest member

to the largest

Easter eggs....

Every day we order pretty much the same thing for lunch...some sort of meat, some sort of vegetable and jidan chao fan (egg fried rice). Not exactly adventurous but with 2 little kids, one of whom has certain dietary requirements, playing it safe is sometimes the way to go....at least at the beginning of our trip. Everyday at some random time before lunch, the specified food arrives. We generally request 1200 for delivery but in reality it may appear anywhere from as early as 1045 to 1215. See, there is an element of adventure after all!
On this particular day though, things got a little mixed up....slightly lost in translation and our staple jidan chao fan turned into this:

Truthfully, I have no idea what exactly it is, how the eggs were turned a purplish brown colour or what turned them into a jelly like consistency. Trent and I thought that it seemed a rather fitting mistake given the nature of the day, but the kids? They failed to see the humour.

We are finally here in Beijing! I'm not sure whether I was more excited that the temperature was 27 C when we landed with not a snowbank to be seen or the fact that we survived another landing at the Beijing airport. I have no idea what it is about that landing but it always seems precarious at best. There were actually audible gasps from a majority of the passengers during a couple of moments. Fortunately the landing was even worse on our first trip so I think that I managed to pull it off looking calm and collected.....white knuckles aside.
Once we arrived back at the hospital we were greeted with some excitement from the staff that remembered us from our first trip. I've got to say that it was really nice to come back to a familiar place and within the first hour we were off to the corner store to pick up the kid's favourite snacks and drinks. It's funny, it's been an entire year since we were last here but it doesn't feel like more than a week or two. Here's hoping that the girls will settle in and adjust to a 13 hour difference quickly!

It's funny how you can be both excited about a trip and dreading all that it entails. In early April we will once again be making the trip to Beijing for a second round of treatment for Tatyanna. Initially our plan was to follow her original doctors to the new hospital that they have recently established. Lured in by the idea of a potential new treatment involving a gene therapy component as well as the shiny newness of the facility, it was an easy sell to a set of desperate parents. Then, as it so often seems to, the proverbial rug was yanked from beneath our feet and we were left wondering if we had made the correct decision after all. The lack of information regarding the new therapy was disconcerting and logically it didn't add up. My slightly unused scientific mind finally started thinking of the right questions and when the answers didn't match up to our satisfaction we really started to wonder if we had made the right choice. After several conversations with respected people in the Batten's community we decided to completely alter our course of action and will be taking Tatyanna back to Tian Tan Puhua. It was not an easy decision but for the first time in the last month, I feel good. All of a sudden there is a sense of peace that things are the way they should be. We know the treatment protocol at Tian Tan and we know the outcome. It's not a cure but the changes that we noticed in Tatyanna were substantial and it went a long way to increase her quality of life over the last year. We are familiar with the staff and the surrounding area. While I agree that there is a time when you should push the envelope, I don't think that for us, this is that time. There's a huge difference between a viable working therapy and something that is still highly experimental. I'm all for trying something new if it makes scientific sense but the new therapy just didn't fall into that category. I do however strongly believe that gene therapy will ultimately be the cure for Batten Disease, I just don't believe that anyone has that cure yet.

Farewell old friend, I'll see you at the bridge.....

Sir Winston of Deebee - August 31 1999- March 10 2009

Although we have known for some time that this day was coming it does little to ease the heartache that we are all feeling. The house is now too quiet, the air too fresh and the sunny patch of carpet, too empty. Much loved, forever missed.

#6

Happy Birthday my girl!!!

In a blink of an eye my daughter has been transformed from someone who looks like they should be playing an urchin child in a production of Les Miserables.....

to an extra in a sequel to Joe Dirt.

I'm still not sure whether to laugh or cry and I have a hard time looking at it without cringing, just a little....but I've got to say, we have been having a good time stocking up on funky hats.