I'm having a hard time letting go of what was supposed to be a temporary blogging site.
Still posting over here: http://www.tatyannashope.com/blog Bigger image sizes and the fact that our friends in China can access it combined with blogger's glitchyness lately have made it even more comfy over there. Please feel free to stop by. :)

Just a quick note to say Hi :) We're back. After being unable to update Tatyanna's other blogsite for all of last week I'm ridiculously behind...but will be caught up soon....I hope.

Looking forward to catching up on all of the 365's that I've missed out on for the last 5 weeks!

Update

Tatyanna and family arrived in China safely, but Janelle cannot access blogger to post. She has set up a temporary blog and will be blogging for the next six weeks or so here:

http://zazalak15835.c3.cmdwebsites.com/blog

Please update your bookmarks!

89/365 Farewell

Today was a day full of goodbyes. This morning we laid my grandma to rest and this afternoon we loaded up our van and drove to the airport hotel in the city. Our plane leaves tomorrow at 7 a.m. Emotions are swirling in a volatile whirlwind beneath the surface but if I were to reach in and grab one, I'm fairly certain that I would come up with mind numbing fatigue.

88/365

Resting up before the big trip....only 2 more days!!!

I'm hoping that I can keep posting to Tatyanna's site from Beijing but won't know until I get there. Blogspot blogs as well as sites like facebook and twitter are all banned. On previous trips I could still access my dashboard (in Mandarin) to write the post but once I pressed "publish" the entry disappeared to the other side of the great firewall that surrounds China. I have plan b and c in place so although it may take a few days to start posting from Beijing, I'm hopeful that I will be able to keep updating things here! I won't however, be able to read any of the 365's that I have been following. My morning coffee just won't be the same!

87/365

On our last trip to Beijing we travelled with numerous books and had to leave many of them behind to keep our luggage under the weight restriction. This time we got smart...enter the Kobo. At the moment I have an eclectic mix of classic and modern literature combined with some Junie B Jones and the Magic Tree House series. I would love some title suggestions if anyone has any!

86/365 Empty

Ever since we moved into this house two years ago, the wall behind the couch in the living room has remained empty. We would tease my grandma that it was just waiting for one of her renaissance style needle point pieces and that it was entirely possible that it just might go missing when she was at a bake sale or down playing tile rummy with her friends.
Today I received the object of our banter and just can't bring myself to hang it....not yet.

It's with a heavy heart that I type this message. Tonight my grandma went home. I am so grateful for the time we had over the last few days and am relieved that her passing was peaceful and surrounded by family. Thank you so much for your thoughts and prayers over the last few days.

85/365

"Which shirt should I wear today love? Blue or red?"

"Are you really asking me that question? I'm thinking that blue might not send the right message given the circumstances." *

***

They say that you can't complain about the government if you don't vote. Trent decided to go one step further and run for office. This morning he made the drive to Killarney to attend the meeting that will officially name him as the Liberal party candidate for the Spruce Woods district.

And in truly "man fashion" he slept in, tossed on a suit and went out the door with wet hair. If it was me I'd have had the bedroom covered in rejected outfits and been up at dawn trying to look presentable and going over what I should say. Equality in some areas is never going to happen.

*in Canada, red=Liberal, blue=Conservative

84/365 Cards for grandma

Our vigil at my grandma's bedside continues and as visitors come and go throughout the day, it is so very apparent at just how much she is loved. She was truly a remarkable woman.
At this point we are praying for peace. As much as we want to keep her here with us, it is not to be.

83/365

82/365

I know it's not "flash back on the first", but I wanted to share an image taken this summer. This is how I will remember my grandma.....impeccable hair, stylish clothes (always accessorized) and a genuine smile for everyone. She was the epitome of class and grace and I'm fairly certain that she could hold her own with the queen herself.

While the prognosis is very bleak, we have been blessed with extra time. My dear grandma has been able to speak with us and although she is just a shadow of her former self, it does all of our hearts a world of good to be able to catch a glimpse of the woman we all love so very much.

The plan for the next few days is to keep her surrounded by love and uplifted in prayer while we wait to see what will transpire.

81/365 Waiting....

....for more info....a sign of improvement....a response.

***
16 years ago I loaded my Mustang with all my earthly possessions (which really only amounted to ratty blue jeans and skate t-shirts, some punk rock CD's and a border collie puppy named Kurt) and moved to my grandma's house in the city. University was about to start and I was eager to begin my life as an "adult".

Over the months that followed we settled into a peaceful camaraderie and I spent hours sprawled on her living room floor surrounded by textbooks and binders while she watched jeopardy or did crosswords in her chair behind me. I know there were probably times where I drove her crazy with my late nights and rag tag group of friends but she took it all in stride and never once voiced her disapproval. Even when my mischievous pup ate her government issued GST rebate cheque, she only laughed at the absurdity of having to call and request a new one using the reasoning of "my dog ate it".

Eventually I moved into a house of my own but it was not uncommon to come home from class to find her happily digging in my backyard, helping me turn what started as a rough patch of thistles and weeds into a flower garden that I could be proud of.

Although her health has prevented her from doing any gardening over the last few years her role in my life was far from diminished and she is still the person that I call with questions about growing things (and my inability to do so) or cooking or knitting - because no one can beat my grandma when it comes to any of those things.

She has been a such a strong presence throughout my entire life and I find it hard to imagine the possibility of a future without her in it. To say that she enriched my life would be the grossest of understatements and I can honestly say that her influence has made me a better person.

80/365

Every year in the spring my inner slacker comes out in full force and I have zero will power to protest when Lexi spies the seasonal Pillsbury offerings in the grocery store cooler and gazes up at me with pleading brown eyes. No fuss, no extra dishes just freshly baked cookies in 12 minutes. I can appreciate such things! Also? Who can resist a cookie with a bunny on it?

79/365 Raining on the outside....raining on the inside....

Somehow the grey skies seem fitting today.

If you could spare a moment to pray for my grandma, I would very much appreciate it. She is made of awesome and is not doing so well at the moment.

78/365

This was not exactly what we had planned for today. :(
Fortunately all is well and Tatyanna is back home now.

77/365

It's been a quest of sorts, finding the perfect pair of "shoes" for my increasingly hard to fit daughter. The combination of circulation that borders on abysmal and feet that are starting to point down and rotate inwards have made all standard footwear an impossibility. You name it, we tried it. Nothing was suitable, which was fine with Lexi who aquired all the rejects and now has a variety of cozy slipper type shoes at her disposal.
And then by random happenstance I found myself here: Wooly Baby - maker of funky and eco friendly wool slippers
Feeling more than a little hopeful I sent an email to the owner of the shop inquiring as to the particulars on the slippers and whether she could do a custom order. After a few emails back and forth, I placed my order and waited. Today, the anticipated package arrived in the mail and when I placed them on Tatyanna's feet, it was instantly apparent that they were PERFECT! Soft felted wool made from upcycled sweaters, with leather on the bottom for warmth (and grip/durability if one needed it) The shape was just right to keep them on her feet without affecting her circulation in the least. One hour later, her toes were still toasty and hadn't turned an all too familar shade of purple. Success!
We opted for neutral, earthy toned "low tops" for our first pair but I will definitely be back for something a little funkier...stripes perhaps? I love the fact that they weren't an identical pair but rather a collection of complementary tones, somehow that seemed all the more perfect for my quirky girl.
I don't normally do product pitches on Tatyanna's site but I know how difficult it can be to find shoes for kiddos with medical challenges so I wanted to share. I would definitely recommend Josie at Wooly Baby! The workmanship was excellent, the transaction was smooth and we had the finished product within the specified time frame. The website indicates what is currently in stock/ready to ship but she was very open to doing a customs order in a size that fit Tatyanna. I only wish that I had ordered another pair or two. :)

76/365 I spy.....

To some, it's just a loose ring snaffle bit...to others it's a perfectly good monacle.



I'm cringing just a little at the peeling paint on my kitchen wall behind Lexi in this photo. What started out as a tiny knick quickly turned into something a little more substantial...although I'm thinking that it just may have had some help from a certain 5 year old who couldn't resist giving it a peel or two. It was rather timely though as we intended to repaint the house this spring.

75/365 Never lose....

74/365 A night out....

It had been a long time since Trent and I were able to enjoy an evening without some semblance of an entourage. Thanks to our awesome respite worker, we were actually able to go out to a movie...one that didn't involve colourful animated characters. As much as I enjoy my kids, sometimes it's nice to watch a movie without multiple trips to the bathroom or popcorn stand.

Trying to capture light trails would be much easier if there was actually traffic.

73/365

Just one of those lazy days. "Daytime attire" optional.

72/365

Just want to say thank you, from the bottom of my heart to everyone who made last night the awesome night that it was. Our goal was to have an evening where people could come together to honour the courageous and fun-loving spirit of our daughter and it was definitely a success. An added bonus was being able to make a sizeable dent in the amount of funds we need to finance our upcoming trip to Beijing.
I'm humbled and so very grateful for the support that we have been shown over the last few weeks. Thank you so much! We couldn't do it without you.

*note to self-bedhead and yesterday's makeup do not a good self portrait make!

71/365

Just enough time to snuggle with daddy before we have to head back to the venue to finish getting ready for the fundraiser tonight!

70/365 The view from here

The temperature is currently on a steady dive and a blizzard alert has just been issued. Until I see Trent's truck pull into our quickly disappearing lane, I will probably continue to restlessly pace the floor and stare nervously into the swirling snow (because that will totally help him get home quicker...right?!) Unfortunately he's an hour and a half away from home, driving on roads that have since been listed as closed. Ugh.

*Edit - Truck is stuck and Trent is stranded in Portage trying to find a place to stay for the night. All hotels are booked solid with other stranded travellers....but at least he's safe.

*Edit #2 - What a long evening! How did we function before things like facebook? Thanks to the fb status of a friend, Trent was able to find a place to stay!
Also? GPS is very handy when you lose your truck in a blizzard. Just drop a pin at your location and you can follow the trail back the next day......we think.

69/365

He's my best friend, constant companion and soul mate. He often knows what I'm thinking without my having to say a word and we have a habit of finishing each other sentences without meaning to. Sometimes I think he knows me better than I know myself.
Years ago he was a fencing coach at the university gym and I.....quickly became the teacher's pet. While we had no idea the future that was about to unfold, I can not imagine going through this journey without him by my side. He is my rock, the one constant in all the chaos. He gives me strength when I am weary and courage when my spirit falters. While the future is so very uncertain, there is something comforting about knowing that we will face it together.

Most Thursdays Trent heads out to teach fencing, Lexi in tow, while I stay home with the others. Tonight I decided to tag along. I'm not sure if that was a good decision or not as it left me longing to pick up my sword and get back to a sport that I onced loved.

When your dad is the head fencing instructor, petti-skirts are totally appropriate attire.
(this, however, will change when she is old enough to do more than footwork and drills)

Making sure big sister is happy

Archaic equipment calls for vintage processing. :)

68/365

...it's like the Sears wishbook...only BETTER!!!

***
I apologize for today's "non-post". Only 3 days until our big fundraiser and things are super busy...but in a good way. We are all very much looking forward to a night of fun and celebration with friends and family.

67/365

Normally when I pick Tatyanna up from school I stop by the kindergarten class to see what Lexi's plans are. I do this, only because it seems the polite, motherly thing to do and I know full well that if her buddy Z will be on the bus then my offer for an immediate ride home will be rejected in favour of an hour long bus ride. Today, however, I was greeted by a very forlorn and quiet little girl who informed me that she fell while sledding at school and hit her head. Several minutes later she said her "brain hurt". Not exactly words that make a mom feel terribly comfortable. Initially she was cognizant and able to follow commands and I though perhaps she had just over done it on the toboggan hill but when coherent regressed to becoming frustrated and unable to put together sentences we made the call to seek medical advice. A couple of hours and a scooby doo sticker later and we were back home with a print out on head injuries and instructions to wake her every two hours. Diagnosis: Suspected minor concussion. I'm not sure that there's a spot in her baby book for that one.

*Edit to add - If there is a perk to having a child that runs on a variety of exotic time zones, last night was definitely it! Getting up to check on Lexi suddenly became much easier when Tatyanna decided to greet the day at 2:00 in the a.m. By 3 they were both wide awake and having a good time watching cartoons. Lexi was back to her chatty, coherent self.....I'm not sure that I could say the same thing about Trent or I.

66/365

This one was taken on my old camera, just for fun, is super noisy/grainy with completely clipped shadows.....and you know what? I love it.

65/365

"Hello? Helloooo? I'm sorry, I can't hear you, I have a banana in my ear. Can you please call back later?" Is it possible for a 5 year old to pick up a banana without talking into it?

64/365

After several "rowdier" days, this one is decidely mellow.

63/365

Today's trip to the gas station has left me pondering the logistics of finding something a little more fuel efficient and then strapping Tatyanna's wheelchair to the roof.

Ok, maybe not really...but the visual did make me smile. Happy Friday!

I remember it so clearly, it could have been yesterday. Tatyanna was sitting on her bed, toys set up on the table in front of her. She looked so tiny and out of place in the hospital room surrounding her. She was 3/4 of the way through her first course of treatment at Tiantan and was showing remarkable improvment. Suddenly it occured to Trent and I that she was talking while she played. It had been months since we had seen her do that. Until that moment, her play had been silent, her brow furrowed. Failing eyesight, frequent seizures and ataxia took so much concentration that even something as simple as play required concentration. We stood there and watched, not daring to move or say anything that would break the moment. I don't remember how long it lasted but I will never forget the feeling that we had been given a priceless gift- to go back and consciously make memories. They say you don't know what you have until it's gone and until I had Tatyanna, I'm not sure that I truly understood that statement.

***

On February 28, which was also very fittingly Tatyanna's birthday and also Rare Disease Awareness Day, Noah Coughlin kicked off his run across the US to raise money and awareness for Batten Disease. Inspired by 2 girls that he grew up with who had the juvenille form of the disease, Noah plans to run an average of 20 miles per day as he treks from San Diego to Jacksonville. His journey can be followed on his website www.battenjourney.com or on facebook. If you happen to live anywhere on his route, please feel free to go out and show your support! I am truly inspired by Noah's determination and willingness to help fight for a cure. Because of Noah and the many people out there who are working so hard, there will come a time when no family will ever have to fight the monster that is Battens.

61/365 the small things....

National Geographic and sushi in the same day?! Does it get any better?

When I was little my parents subscribed to National Geographic and I remember pouring over the pages with wide eyed wonder. There was a sense of magic between those soft covers and as I lay sprawled on the carpet of the living room floor, magazine open in front of me, I would be instantly transported to a completely different time and place. I remember reading with fascination about the Burmese women and their neck rings, Maori tatoo art and the monkeys bathed together in the mountain hotsprings. One issue even came with a floppy record (yes, I'm that old) of whale sounds...which somehow "mysteriously" disappeared after I played it for the hundredth time.
Even though the same information is available with a quick search on google, there is something timeless about flipping through those familiar glossy pages. It's kind of funny how even as an adult, I still eagerly await it's arrival in the mailbox. It's a nice change from the usual bills and flyers.
My 12 year old has declared that I have now decended even further into geekdom and wonders how I could possibly find something that contains no articles on fashion or celebrity gossip the slightest bit interesting......it doesn't even come with perfume samples!!!

***

It has been brought to my attention that I haven't mentioned the Tatyanna's Hope fundraising social on here.
If you live in the westman area and are looking for something to do on Saturday, March 12. We would love to see you at the Imperial ballroom at the Victoria Inn in Brandon. Doors open at 8, with lunch being served around 11. Tickets are $15 and can be purchased at Grower Direct Fresh Cut Flowers on 17th and College. There will be a silent auction with some fantastic prizes and it should be a fun evening all around. Because the venue is licensed as a dining hall, the under 18 set are more than welcome to attend, they just can't buy drink tickets.
When Tatyanna was well, she loved big gatherings of family and friends and would happily flit from person to person whether she really knew them or not. I awould love for this event to do her fun loving spirt justice. All proceeds go towards helping to fund Tatyanna's upcoming trip to Beijing.

If you don't live in the westman area, you're probably sitting there wondering exactly what a social is. :)

60/365 Flash back on the first....March 4th, 2006

Don't let the smile fool you. ;) By this age she had earned the very fitting nickname of Stitch and could destroy a pantry in the time it took to change a load of laundry or her baby sister's diaper. She also had an affinty for climbing monkey like through the kitchen cupboards and had already been found swinging from the living room curtains on more than one occassion. Her favourite food was sushi, she almost never wore clothing (at home...which required a certain degree of parental vigilance to enforce in public) and she could point out the directions to her favourite place in the world - the Edmonton Mall. Once we got close she would shriek "turn here!!! turn here!!!" at the top of her lungs, giddy with the anticipation of riding escalators and peering into the fishtanks at T&T superstore.. She approached life with gusto and truly believed that the world was a beautiful place. In her eyes, there were no strangers, only friends she hadn't met yet.

59/365 Bittersweet

8. It is the antithesis to Lexi's 5. 3 years ago I used it as a way of consoling myself, helping me cling to the belief that I had more time. While I knew that 8-10 was only an average it somehow felt distant and reassuring. 8-10 gave me 3 years to fight. 3 years for a cure to be found. 3 years before I had to deal with a loss that was too unthinkble for words. It's funny how 3 years can go by so quickly.

Today I awoke, sang happy birthday to my little girl and watched a radiant smile spread across her face. She always loved birthdays. It didn't matter if it was hers, she just loved to celebrate. Birthdays to Tatyanna were bigger than Christmas. I could feel the breath catch in my throat and the all to familiar sting of emotion that refused to be quelled. Summoning all the strength I possessed, I somehow managed to keep my voice cheerful and demeanor upbeat. She deserved for this day to be awesome.

And then, as the day wore on and birthday emails and facebook well wishes came pouring in from all over the world and fellow students presented her with cards that they had crafted with care, I could feel my spirits lift. Buoyed by the collective sense of love and humbled with gratitude I was left in awe at just how much people care for my girl. Tears that were once tinged with a sense of bitterness and loss now ran sweet and as I tucked her into bed I felt a sense of peace. Today was a good day indeed.

58/365

Preprations for tomorrow's special day.

The almost finished product, the next morning...just waiting on the licorice string antenae and chocolate butter cream bodies.

57/365 Her moment to shine...

***

This was supposed to be a double feature as the moment the dance recital was over we raced across town to where Keirnan was playing basketball....only to find that he had fouled out minutes before and would spend the remainder of the game on the bench. Apparently his desire to be back out on the football field came out a little to strong.

56/365

One step closer...

***

I really want to give this place a raving review but after much thought I just can't do it. Boon Burger is a funky little burger joint that specializes in vegetarian fare with most items on the menu being entirely vegan. When I read an add in a magazine in the hotel room I was instantly smitten. After looking at the menu online, my heart may have begun to sing, just a little. How I convinced my "it's not a real meal unless there is meat" husband to go there is beyond me...but he did and actually agreed with me that the food was awesome....particularly the Buddha burger with all it's curry-maple-red pepper-mango-chutnied goodness.
And then we went to leave. On the wall next to the door were posters all promoting and celebrating things like diversity and equality and as we struggled to get Tatyanna's wheel chair over the steps and thresholds and juggled with heavy doors I couldn't help but wonder why equality is often overlooked when it comes to physical disabilities. (I'm not sure how I missed this on the way in but will chalk it up to the overwhelming sense of anticipation of having a multitude of menu options) In this day and age, why is acceptible to have a business that an entire group of people can not physcially enter? Perhaps we have longer way to go than we would like to think.