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.

If I could look through a window into the past, one of my first and least obvious choices would be a balmy July night exactly 12 years ago. I stood surrounded by friends in the waning light of the day. The night air was filled with the sounds of skateboards grinding against concrete and excited cheers when a difficult trick was landed. I stood off to the side, in the dim light offered by a nearby building. A game of hacky sac was going on and I although I made a half hearted attempt to join in, my thoughts grew increasingly inward. Between the growing pain in my back and side and the burgeoning intuition of a new mom, I knew that this would be the last night of it's kind. The last few moments of a carefree existance where I could be secure in the knowledge that I knew everything and was on top of it all. Wow, do things change!

Just like dad.....sorta

Same pig....different day

I find them all over the house. Names and phone numbers scrawled hastily in a variety of colours on scrap pieces of paper. Sometimes there is corresponding information but more often than not, it's just a name. Every time I get a call from a person claiming that they can "heal" my daughter I feel compelled tor write their name down. Sometimes I even take them on a merry hunt throughout my house while I attempt to track down a pen that can actually get the job done, carrying on a running dialogue as we go on the quest together, just so that they know I'm sincerely looking for some sort of writing utensil. The strange part is, for most of these people, I know that I will never pick up the phone to call them. It's not that I don't believe in alternative healing methods....although to be honest, I really can't see how "plunking some numbers into Tatyanna's energy fields" is going to somehow miraculously make her better, it's because every other parent with a Batten's child has gone down this road before. They have all grasped desperately at what ever hope is available, spent thousands of dollars on miracle herbs and taken their kids for Reiki and ionic footbaths and they just don't work. Despite this, I do appreciate the effort it took for these people to pick up the phone and make the call. Particularly since I have yet to hear from people I once considered to be friends. Most of them seem genuinely concerned and really believe that their products/treatment will work. I can appreciate this and so, I take the time to write their phone number down, as if in some unspoken way this makes my gratitude more real, more tangible. There's also a part of me that believes that they will somehow know that I'm not actually writing the phone number despite my claims to the positive and all sorts of unpleasantness will then ensue.
The only real problem with this practice is, I'm left with remnants of paper around the house and have no idea if the number is something important or something that is safe to toss in the recycling bin.

If Chanel can have a perfume called Chanel No. 5 then I believe that we inadvertently painted the bathroom Behr Brown No.2. Although I'm of the belief that it's not the best colour choice for a bathroom given it's similarity to the obvious, perhaps some might find it inspiring?

First Pet

Guinea pigs were never really on my list of things to own. I'm more of a horse/big dog kind of person. I like it when my pets are large enough that becoming inadvertently squished or lost to the duct work mazes isn't even a remote possibility. But, being an open minded sort of person, or maybe simply a sucker, I thought that we'd give it a try. After all, China was never on my list of places to visit and I would go back there in a second so maybe the same applies to small rodent like animals?? The offer was too good to pass up really. 2 guinea pigs with all the necessary accessories, bought by an individual who was unprepared for the work, for free with an "if it doesn't work out, bring them back" clause. Although Skylar was quite willing to claim and accept responsibility for both guinea pigs, the moment Lexi saw them, she was completely enamoured....even though they aren't the chinchilla's that she has been asking for. She now wakes up in the morning and starts the day by saying "I need to go see the guinea pigs....they aren't chinchillas you know." *sigh* Somehow I don't think that there's any way those pigs will be going anywhere. Congratulations Linny and Henry, you have just found your forever home. And I have just increase my workload 2 rodents worth. It's a good thing they're kind of cute....even if they aren't horses.

It's been a while....

I used to really enjoy blogging. My semi-regular posts were often light-hearted and I tried to write in a way where you could see the humour in what at the moment seemed like a pretty bad day. I enjoyed the occasional comments from readers and felt good when people said that what I had written had made them laugh. I enjoyed making people feel good. I haven't posted much in the last few weeks and there is a good reason for it. Lately, I don't feel good. The "funny" is all used up. In it's place is just a hollow emptiness that doesn't seem to fade. I knew that this phase was bound to happen, I just wasn't sure when. I'm tired of always having to be strong. I'm tired of hearing that I'm an "inspiration" and that what we did was heroic. I'm tired of looking for the "small blessings" and of treasuring the moment because I don't know if there will ever be another one. I'm tired of trying desparatley to keep my family functioning while running frantically between meetings and therapy appointments and the housework piles up and I am left to fall in to bed exhausted at night. I'm tired of being the anchor to too many ships. I'm tired of being tired.

I watched a mother walk down the bike path yesterday. She was pushing a jogging stroller and walking with a purposeful stride. One half block behind her was a 3 year old boy. He, apparently, hadn't gotten her memo that they had an agenda and was meandering aimlessly along the path dragging a stick along the ground and watching the path it made in the damp earth. His mother had obviously taken the time to carefully choose his brand-name clothes and sneakers but couldn't take the time to join his world as they walked. I wanted to shake her and point out exactly what she was missing. I see parents everywhere with young kids and a piece of me wants to go back to the moment when my life was good. A moment when I remembered what it was like to wake up in the morning and honestly feel a sense of excitement about the day to come.

Thursday, Tatyanna will be getting her "wish pony". As a horse-crazy mom who wanted nothing more than to have her daughter share her passion for the equestrian world, this should be a momentous event. But instead of joy, it will be bittersweet. My daughter's pony is a result of a wish made to the Children's Wish Foundation. My dreams of teaching her the elements of basic riding and cheering her on at her first show are gone. Instead I will try to find joy in her smile as I walk beside her and she goes for a walk on her pony; all the time praying that she will have another day to go for another ride.

I debated deleting this blog. I know that I have picked up readers(read: family) who can't handle negative emotions.
But, I changed my mind. This is my reality. It's not sunshine and roses. The reality is, my 5 year old daughter has Batten Disease and as such I will have to look for light in the darkness and smile even though my heart is breaking. It will be a bumpy ride, so if you aren't willing to hang on, it's probably best that you get off now.

On a lighter note, TV seems to have taken a sudden liking for using sumo wrestlers in its advertising. I can appreciate this as I can't seem to watch sumo wrestlers without smiling, just a little. It's probably horribly unPC, but this time, I'm ok with that. Sumo wrestlers make me feel better. So there.

Heres lookin' at you kid

This is one of those moments where I, thinking that I had taken a nice "memory photo", put the camera away a few minutes too soon. Right after this shot was taken, Tatyanna, in a moment of unbridled Bovidae adoration, leaned forward, placed both hands on either side of the goat's face and planted a big wet kiss on his lips! Comical does not even begin to describe it. I "kid" you not. Umm...I'll stop now....

We are home!!!! I will update, there will be back entries from my keyboard free period, and photos...but not until the kids are no longer sick with the minor plague that they brought home with them (souvenirs anyone?) and the jet lag has worn off. I thought that we would adjust better this trip to the time difference but 430 this morning found Trent and I making sandwiches in the kitchen.

Gradients of relaxation while travelling....

Bejing airport....notsomuch


Vancouver airport....perhaps a slight improvement?

Winnipeg, Sheraton 4 points hotel.....Ahhh....

And then there were 6

When we left Canada as relatively unseasoned and unpracticed travellers we had a modest 3 suitcases plus carryons in tow. Today, after spending 7 weeks away, we will return home attempting to juggle 6 suitcases. Add that to the carryon baggage and 2 small children and it should be an interesting kind of day. Suitcases...they are like rabbits.

a minor inconvenience.....

I have come to the conclusion that the keyboard is the most under-rated component of the laptop. Much discussion is given to CPU's, motherboards and the like, but one becomes quickly aware of just how essential a working keyboard is when they are stuck in a foreign country and said component decides to "take its own vacation." Due to our recent mechanical difficulties, this will be the last "in type" update before we arrive home. I will try to provide you with some photo updates over the next couple of days so please feel free to fill in your own stories and captions to go with the pictures. It will probably be more entertaining! I can access email at all the usual addresses but since any responses will either have to be typed on the iPod (and sent when it can get a connection, which is rarely) or by painfully cutting and pasting the letters from other sources (which I have done and can't say that I enjoyed), the chances of you getting a reply will be fairly small. I feel bad about this, really I do and want you to know that I truly appreciate emails and will get back to you as soon as I can.

The good news is, we get to go home early!! Tatyanna had her last injection on Tuesday and as such, we are able to go home on the 27th of May. Because we were expecting to have another 10 days, the weekend will be filled with last minute sight seeing and packing up our room. The girls are more than ready for the trip back to Canada and when Lexi was told that we would be going on a bus ride to the night market this evening, her response was a very emphatic "NO...I'm going home on a plane." To which Tatyanna added "and go to Build-a-Bear!"

Since making a list of thing that I miss would pretty much be stating the obvious and go on for far to long, I thought that I would change things up a little.



Things that really can't say that I've missed:


1. It has been approximately 6 weeks since I have read an article outlining the exploits of Britney Spears or discussing the many children of Brad and Angelina or wondering about the whereabouts of Suri. I'm ok with this. My world has come not come crashing down without hearing the latest celebrity gossip. In fact, I think it might be a better place. I will however be honest and admit that there is fairly good chance that I will pick up a People magazine for the flight home. 15 hours of intercontinental travel with 2 small children is hardly the time for intellectually stimulating reading.


2. Springtime in Manitoba is bi-polar at the best of times. I can honestly say that I can do without the 2 months of sending the kids to school in T-shirts one day and parkas the next.


3. Filling the truck up with gas. Taxis are plentiful and super cheap in Beijing. To hire a driver to take us to the great wall, a 2 hour drive, wait around for us until we are ready to leave and then drive back to the hospital, the cost is 700 RMB. That works out to about $100 CAD. Most of the time we simply load Tatyanna's chair onto the bus and go wherever we need to go, for the unbeatable price of 1RMB.....that's $0.14 CAD.

4. Paying the sticker price. It's significantly more fun to ask the price and then see just how low you can actually get the item for. Trent and I are far too competitive though and it's almost become a game to see who gets the better deals at the end of the day.

5. Meal planning. Once in a while I sort of miss cooking, but then I just sit down until it passes. When things are chaotic, it's kind of nice to wander down to the cafe, request the "lunch special" and know that it's going to be both healthy, and fairly decent tasting. This however doesn't apply to fish. When Sam comes to the room wondering if we would like fish for dinner, the safest response is to just say no.

6. As much as I love my dog, that warm, fuzzy feeling does not extend to the various substances that he tends to produce. Great Danes are large dogs and as such produce large messes. On a bad day, they can leave a slime trail that would make a snail green with envy. There was nothing in the "Great Dane Puppy Guide" that gave any indication that I would one day be cleaning slobber from off the ceilings.

lost in translation

It's funny but I don't remember these discs having this title when I bought the same versions in Canada.
For an even funnier and much more extreme example of "interesting" translations,please go here: http://www.rahoi.com/2006/03/may-i-take-your-order/ We have actually seen menus similar to this on a much smaller scale. It keeps things interesting.

It's almost kind of sad how excited we got to see/hear Tatyanna counting again. Prior to our trip to China, I can't remember the last time that she was able to do that.

One year ago, Trent and I stood on the edge of a battle field. Unaware. Oblivious. We naively made plans for a future that was never meant to be and honestly thought that things were starting to look up. Within a month we found ourselves in the very trenches of a battle that we were not prepared to fight.

No one said that parenting was supposed to be easy but some mom's really get a raw deal. To those mom's this is my toast to you, because you truly deserve it. (Feel free to grab the beverage of your choice at this point: juice...water...a nice south African pinotage...tequilla...don't worry about finding the glass, it will be less to wash later)

Here's to all the mom's who have knelt at their child's bedside whispering fervent prayers for a better day

Who are too scared to dream for the future because all that really matters is that they made it through today

To the moms who have held their crying child, stroking the tendrils of damp hair away from their cheeks and wondering if the tears would ever end


and to those who long to hear their child utter a single sound and know that even a cry would be like the sweetest symphony


To the moms who could play connect the dots with the IV scars that cover their child's hands and feet


and know more technical terms and drug interactions than your average med student.

To the mom's who could tell you the days of the week without looking at a calendar....it was written on the weekly pill dispenser, and isn't today PT...it must be Tuesday...

And to those who drive wistfully by playgrounds, wanting nothing more than to spend an afternoon pushing their child on a swing or making castles in the sand.


To the mom's who refuse to quit, who keep pushing, knowing that it isn't because they are particularly strong or even because it's something they want to do,

But because they have to, there simply is no other choice.

And to the mom's with experience, who's babies have long since grown up and have children of their own

Who know that while this isn't their battle, they are there to provide an ear to listen and a shoulder to cry on.


Here's to the moms who have endured more than they ever though possible and know that there is more yet to come


May you find the courage and strength to face each new day and never stop looking for the small miracles


To all of you, Happy Mother's Day.

Censorship...it's what's for breakfast

It's funny, while I can update my blog from China I can't actually read it once it's been published. Not that I would really want to, I rarely read it over for editing purposes before hitting the "publish" button (I'm sure you've probably noticed that one), but it also means that I can't read a majority of my "regulars" either. Live journal, blogger and an assortment of other sites with seemingly innocuous titles have all disappeared into to void of "Internet cannot display the webpage" My morning coffee routine is just not the same....but that might also have something to do with the fact that it now consists of a cup of instant Nescafe and not a perfectly perked cup of Peruvian Chanchamayo or the like. Now when I get home, not only will I have to wash 15 loads of laundry (the older 2 kids are at their dads for 8 weeks) I will also have to catch up on 8 weeks of missed blogs. This could take a very very long time.

"I'm going home....I'm going to school to see Keirnan and Skylar!" Lexi emphatically announced as she stood poised at the room door wearing nothing but her sister's pink sneakers and a white plastic shopping bag containing all of her clothes, slung across her back. A magnetic story board with its assortment of princesses and pretty dresses was in one hand and a colourful plastic pony in the other.

I think it's safe to say that she's had enough! I wish I was closer to the camera because that was truly a "kodak moment" Her feelings echo those of everyone around her, but this is only the halfway mark....there are still 4 long weeks to go.

Just a couple of photos.....

This one will be sure to make anyone with any sort of nursing experience cringe. This lovely, and somewhat archaic, glass bottle IV is hung daily with the instruction of "Only half" Once the liquid reaches the halfway mark in the bottle, we then ring the nurses to switch medications. Sometimes they give us a line, sometimes not.


Every time I walk by this sign I'm left wondering, "what kind of stuff..."

Some things that I have noted since being here that probably won't appear in any sort of travel guide:

1. Later -this means the person will get on said task immediately and be back before you have time to finish changing your t-shirt

2. Later Later - this is slightly longer than later...could be 15 minutes, could be an hour or two. It's hard to say.

3. I know - said once, it generally means that they do in fact comprehend whatever it is that is being said

4. I know I know - the more times that "I know" is said, the more you can be assured that they really have no idea what you just said. Generally though, the individual will be remembering the sentence and translating it later if possible.

A Day in the life

6-8 am - this is quiet time...and the only real time in the day that i can catch up on emails etc. Nurses generally begin their rounds at around 630, cleaning staff is in by 730. The hot water doesn't get turned on until 7 ish so it's often a rush to get showers in for Trent and I between 7 and 730.

7:00 AM - Mmmm....instant coffee. The only real sort of coffee to be found is espresso beverages at the cafe. Nobody drinks perked coffee. It's all instant....and comes complete with "cream" and sugar.

8:00 AM- Morning meds....there is also noon meds...4pm meds...8 pm meds...and IV meds. It's all good fun! (that was sarcasm...trying to convince a 5 year old to take consume a pharmacy a day is a little difficult)

Playing is a good way to start the day! The dr. usually comes in at this point and tries, to no avail, to engage Tatyanna in some form of conversation. The constant poking and prodding has left her a little wary of anyone wearing white. Her usual attitude is very much one of "if I don't look at them or talk to them....maybe they'll just go away" It's a little frustrating for everyone. The dr.s here are amazing! I wish I could bring the medical staff home with me.

930 AM - As soon as Tatyanna leaves for therapy with her dad, it's shower time for Lexi

930 AM - At Occupational Therapy/Speech

Playing with the fish with the OT therapist. OT is Tatyanna's favourite therapy.

1030 AM - Rainy days = much computer playing and TV watching

11:00 AM - Physical therapy. Tatyanna doesn't really like PT as she is made to do things that she doesn't want to do...and always gets sent out with homework.

We still haven't figured out if she's in room 12 or room 21 and we know that is says Tatyanna....we are also fairly certain that what's written after her name reads "the one with the bratty little sister" in Chinese, but we can't be sure.

12:00 - Lunch is generally rice...or noodles...or sometimes, if we are feeling particularly adventurous, rice and noodles.

1:00 pm - Pearl/Hongqio Market - My first kid free moment of the trip thus far! A great many of the buildings here are being renovated or restored for the Olympics. Within a few months the city will be a totally different place. It's kind of fun to watch the transformation!

This is one of the allies that branch off the lane leading to the centre. The lane is truly a fascinating place and seems to be its own micro community. The lady that cleans our room informed me that the second second door in is her home. What are the odds of that happening?! I've got to say that I felt a little strange, but she didn't seem to mind at all.

11:am. & 3:00 pm - "The Food Lady" - She comes around several times a day to see if we want to order anything from the menus seen in her arms. It's interesting to see what we get sometimes as she doesn't speak any English and half the menus are in Chinese. Usually, we just order dinner and make our own breakfast and lunch. Dinner for 4 here generally costs us less than $100 RMB ($15 CAD)

1:00 - 4:00 - Today because I am out, everyone feels sorry for Trent and stops by to help out. These are 2 of our favourite people here and have really gone out of their way for the girls.

6:00 - Dinner! We actually found a menu that said "No MSG" on it. I wouldn't be surprised if this will be our first MSG free meal since we've arrived.

Rice and curried vegetables. Yummo! (Actually, I believe that Rachael Ray is really the only person who can get away with saying that.)

6pm-9pm - IV meds. The time is variable and depends on the number of meds on that particular day and when we chose to have Tatyanna sit quietly. Usually we start earlier in the day as numerous bags of fluid equals numerous trips to the bathroom.

9pm - Once the kids are sleeping, Trent and I pretend to watch T.V. We have the entire series of Firefly as well as Season 3 of the unit. If you watch an episode or two of one, then the other, it's kind of like being at home....sort of.

Cost of cab fare from Tiantan Puhua hospital to the Pearl Market - 13 RMB

Cost of hand carved dragon stamp at market shopt - 55 RMB

Cost of ink to go with hand carved stamp - 10 RMB

Husband's expression when he finds out that you paid a total of 65 RMB when he paid 300 RMB for the same thing 2 days earlier - priceless.

***

Today I was actually able to leave the centre, sans kids, for the first time ever. To say it felt good would be an understatement. I went to a nearby market with an Australian woman who is here helping her sister for a few days and she taught me the all-important art to bargaining. She is truly the master but by the end of the day, she was impressed with my mad bartering skillz. I've got to say, it was the most fun I've had in a long time and I'm sure that my dreams tonight will be filled with calls of 'lady...hey lady....i have good price, just for you....i offer you good deal..."

***

A photo heavy "Day in the life" post should be up tomorrow. I can't actually participate in livejournal's ditl community as that particular site is censored by the Chinese government.

Keeping things updated here and on Tatyanna's site has proven to be more difficult than anticipated....particularly since the computer is serving double duty as the kid's t.v. This weekend there will be more to read here....and maybe some pictures...

Nothing intelligent here today.....I am much too tired for that...

April 11, 1:05 A.M.

-Did you know that when you go to the blogger homepage to log in, it's actually written in the language of the country that provides the internet service? Fortunately, the layout is the same so navigating my way around wasn't too difficult. This example carries through to the rest of our stay here thus far. Brand names have taken on a whole new level of importance. Coke still looks like Coke even when it's written in Chinese. I can truly appreciate that. It's funny how we often take the ability to read and write for granted. When you become suddenly immersed in a different culture, symbolism, commercial or otherwise, takes on a whole new level of importance. This point really deserves it's own post but there is simply not the energy for that at this time. I have slept a total of 7 hours since we woke up at 5:00am on the morning of the 8th and there is no coffee here. Tomorrow, I will go out and buy myself some coffee....I hope.

-Pizza here is not like pizza at home. It comes with things like broccoli and does not have tomato sauce. It actually has a lovely little side of Heinz ketchup....which Lexi got quite excited about....because in her world, food is simple a side dish to her ketchup.

-Milk comes in bags, with pictures of cute little cows prancing across the surface.

-Tomorrow I get to attempt to explain why there is no way in hell that I will put my child on tegretol again. I will seriously abandon the treatment and go home before I let this happen. My other thought was to simply dump the offending capsule in the toilet and simply say nothing. We'll see what happens I guess. (Tegretol is what Tatyanna was on last summer and it caused a dramatic increase in her seizures)

-China is very much a "dr. knows best" country and although they try to accommodate my requests for things like drug lists and my refusal to administer anything to my child until said list is in my hands, it is something they are not used to.

-Chopsticks are a multipurpose tool. The shower wasn't draining properly this morning and the maintenance guy showed up, chopsticks in hand. Unfortunately they do have their limitations and he was forced to send for more tools to get the job done.

-Tatyanna and Lexi have become instant mini-celebrities and attract a significant amount of attention whenever we go any where outside the room. Actually, the room itself isn't particularly safe and we had a group of nursing students (?) show up to check out the new arrivals. Lexi is currently developing a rather diva like attitude. This will need to be taken care of before it gets any worse. I half expect her to show up with an agent and a ryder with her demands any day now.

-Everyone here is amazingly friendly and helpful. There are no bitchy nurses and they all try really hard to understand what our needs are. I'm not used to this but appreciate it a great deal.

-The only other Canadian family leaves tomorrow. Almost everyone else seems to be either from China or the UK.

Just a quick note to let you know that we made it! It's now 3:49 a.m in Beijing but everyone's internal clock reads 2:49 p.m. Jet laggy children are not fun children. I should be able to update more later!

Q & A

Just wanting to help clarify a few things....

1. Why China?

At this point in time there is no treatment available in Canada and no upcoming clinical trials for Batten Disease. In the US, they are between trials. In China, what is offered elsewhere as experimental, is considered treatment and therefore available to anyone who can pay for it.

2. Are you sure it's not a scam?

Believe me, we have referenced and cross-referenced the centre in question as much as we possibly can. I have spoken with people who have been there and contacted organizations who I believe are reputable to get their opinion. I'm not one who likes to part ways with my money and the tens of thousands of dollars this treatment costs is not something that I take lightly- especially because it's been given in good faith by so many awesome people.

3. This is a genetic condition....can your other kids have it.....are you having them tested?

This is a question that seems to come up rather frequently. The simple answer is yes...possibly...not at this point. Because my older 2 kids have a different father and are nearing the pre-teen years, there is a slim chance that they could be carriers of the recessive gene that causes Batten Disease. The odds change considerably for my youngest daughter. She has a 25% chance of also having this condition. At this point she has not exhibited any signs and we are hopeful that she has been spared. While having her tested could bring about some relief, we do not feel that it's worth the pain we would experience if she tested positive and we were then forced to sit and wait for the disease to begin to manifest itself. It is easier for us to live with the vague, looming threat that it could happen but might not. She will however need to be tested later on to determine if she is a carrier. The chance of this occurring are considerably higher at 50%.

3. I heard Trent's grandma died of Batten Disease....

This rumour has begun to circulate in a smaller local community and frustrates me to no end on so many levels. I don't particularly enjoy the fact that my daughter has become small town gossip fodder. I also truly hate it when people begin to spread things as fact without verifying their information. Several people worked very hard on a website to help keep people informed but it seems that very few actually click on the "about batten disease" link. Trent's grandma died of ALS and nothing else. Because they are both neurodegenerative conditions they share some similarities. Symptoms of late infantile batten disease occur between the ages of 2 and 4. Children rarely live past 8-12. Trent's grandma was in her 70's......enough said.

4. "I don't see why you need to fund raise, it's not like it's a rare condition or anything. There are 2 kids in Saskatchewan who have it...."

Don't you love small town people with big mouths? I found this one particularly interesting because the family mentioned is also fundraising in their community. While there are 2 children in the neighboring province with Batten Disease and we were saddened to hear the news, the fact that there are a handful of kids in Canada with the condition still classifies it as rare. Because the government offers no real assistance, parents must come up with the funding on their own.

5. Don't you hate airplanes?

Yes, yes I do and the thought of going on a 12 hour flight over a vast body of water disturbs me greatly. But then, I have also lost sleep over things like "Jack Bauer vents"* and Hanta virus, because I'm neurotic like that. Sometimes you just have to suck it up and do what you have to do.

6. Tatyanna's lucky to have parents who are willing to go to those lengths for her...

While these sort of comments leave me feeling sort warm and fuzzy and kind of odd, I really don't understand them. How could we not do what we are doing? How could we not try? How could we look her in the eye knowing we were doing nothing other than simply waiting for the end? If you were to spend a day with her, you'd understand. She's a pretty awesome little kid. I only wish I could do more.

7. Are your older kids o.k. with the fundraising...the trip to china etc.

They know that we are doing for Tatyanna exactly what they would want us to do for them if they were the ones in her position. We are trying to keep them as involved as possible and while having your mom and step-dad gone for 8 weeks won't be easy, they are old enough to understand. Current technology makes it relatively easy to stay in regular contact. Truthfully, sometimes I think they are just excited to see what we will bring them back from China!



*I believe it was in season 3 where a viral agent was released into a hotel through the internal air circulation system. To this day, I still look for the vent type immediately upon entering a hotel room. Fortunately, I have noticed in the many hotels that I have stayed in over the last few years, most have air systems that vent to the outside. Internal vent systems will always be known as "jack bauer vents"

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

Tatyanna's wish, part one...

*written version to follow