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.

55/365

After having 4 kids and travelling a fair bit with all of them, I just may have learned something - trying to get down to the restaurant for breakfast and retain any sense of sanity is futile. Add Tatyanna's erratic sleep schedule and specialized feeding needs to the mix and mornings become even more chaotic. But really, what could be more fun than eating cereral from a tiny box?

54/365 Breathing room

Things that I will not be doing for the next 2 days:
-laundry
-dishes
-taking out garbages
-sorting out sibling disagreements
-did I mention laundry?

Things that I will be doing:
-answering "how much longer until we get there?" approximately one million times...I'm not looking forward to the upcoming flight to Beijing and wonder how many times a person can ask the same question in a 10 hour time span? I'll let you know when I find out ;)
-lounging around a hotel room
-ordering room service
-catching up with my little sister
-checking out fun shops and restaurants that dont' exist in our small city

53/365 Breakfast of champions busy moms since 1971

Taken with my trusty iPhone hipstamatic :)

52/365. Symbiosis

"This isn't going to be going on the internet is it?" (children of bloggers know that there is never a safe moment)

"Possibly.....there's a pretty good chance..." (i had every intention of using it for today's 365)

"But my hair is still wet and I'm wearing that free t-shirt that came with the pizza the other night...." (I'm still getting a kick out of the fact the my 14 year old suddenly has standards. It seems like yesterday that he would spend all his spare money on Yu-Gi-Oh cards, now he uses it to buy clothes)

"True...but you're also supposed to be cleaning the bathroom right now and know perfectly well that I'm not going to make you leave your sister who is so clearly enjoying your company. We'll call it even."

And so he sat there for the good part of the afternoon, watching shows like Dora and Backyardigans and keeping his little sister entertained. I don't think the smile left her face the entire time he was there and as I tackled the chores that he had been assigned, that's all that mattered.

***

Just want to say thank you for your comments and messages over the last few days. Your words of support and encouragement mean so much.

51/365

Tonight I walked into the kitchen to find leftovers from supper, last night's Mexican layer dip, a juice box and a can of Guiness sitting on the table next to a stack of dishes and bowls. On the other end of the table was the above message carefully assembled out of pieces of yarn. Apparently lexi felt that her dad and I needed to go on a date and took it upon herself to very sweetly orchestrate one on our behalf. Even more amusing was the way she kept peeking around the corner, asking how our date was going and inquiring whether we needed anything else.

50/365

Three years ago we received the news that would turn our world upside-down. 3 years later we are battle scarred and weary but still standing.

49/365 "D-day minus one"

"Pizza!" She shouted it gleefully as she bounced on the hotel bed, pigtails flying, bare legs a blur of motion. For a second I wondered if I should stop her but I didn't have the heart. Not on this night.

"Pizza, it is!" I tried desperately to keep my voice as normal as possible. Anything to belie the icy fear that had taken root in my chest over the last several days and was now threatening to overcome.

Later that evening I tucked my girls into bed, their hair wet on the pillows, "read one more story times three "and kissed them goodnight. As darkness settled into the room, I lay next to their father, his arms tight around me, breathing a silent prayer that this day would never end. Deep down, I knew that tomorrow our lives were about to change forever....but mercifully I could not fathom how much.

48/365 Groundhog shmoundhog...I'm calling shennanigans!

47/365

The number of newborn/kid sized hats in my stash of photography props can be directly correlated with my internal levels of stress. These are just a few recent creations. There are actually several more that seem to have disappeared into various drawers and storage chests around the house. I don't actually enjoy knitting but I'm the sort of person that always has to be doing something and it drives the people around me crazy. When stress levels go up, this tendency increases tenfold. Newborn sized hats seem to be the perfect solution as they are small enough to be finished in a few hours, functional from a business stance and keep me sitting in one place long enough to string a few thoughts together.

As the days count down until we are hoping to be in China, things are definitely becoming a little more anxious. Normally Trent and I are spontaneous and easy going but this is one occassion where we really want to have all the details finalized well in advance. Since hurry up and wait seems to be the current name of the game, I forsee many hats in my near future. :)
I'm actually wondering about connecting with one of the organizations that collects hats for orphanages in China so that I can at least put my type A personality to good use.

46/365 the best medicine...

I love nights like tonight...when her eyes sparkle and giggles leave her breathless. It's funny how quickly things like routine (ok...maybe we never really, truly had one of those) and bedtime go out the window as we try to savour each moment and make it last an eternity.

45/365

For some, Valentine's Day is a celebration of love and romance, for others it is merely a day of reluctant obligation.

When your family owns a bustling flower business, it's a day where you are run off your feet on the busiest day of the year. Truthfully, I enjoy the chaos and sense of elevated excitement and it's my favourite day to help out. But will also admit that it was nice to go back to my regularly scheduled job of "just a mom" at the end of it all. For everyone that regularly works at the shop, tomorrow will be just a like any other day at the office....with no breaks or downtime to recouperate.

At the end of a very long day.....

Fortunately, new stock is sitting in storage waiting to be put on the shelves for the coming week.

Why flowers cost more on Valentine's Day....a public service announcement:

Ever wonder why the cost of flowers seems to skyrocket near that one special day of the year? Before my mom and sister opened a flower shop many years ago, I had assumed like most people, that it was to cash in on the holiday....but that couldn't be further from the truth. In fact, the florist's profit margin on Valentine's is actually lower than it would be any other day. The combination of increased costs from the growers (who have to sacrifice their crops to produce enough flowers for that one day) and increased freight costs mean substantially increased costs for the flower stores themselves.
A good article can be found here: Valentine’s Roses, Why the price increase?

44/365 Life unstructured

Sometimes I run around, frantically tidying wayward toys and laundry piles, before I pull out the camera....and sometimes I don't. Guess which one today was. ;)

43/365 Love is.....

....making your daughter's favourite sandwhich and serving it with a smile despite the fact that it makes you want to gag, just a little. Peanut butter and cheese whiz on whole wheat.... two ingredients that I never would have thought to put together. She assures me that it's the "awesomest sandwhich in the whole wide world" and it very well may be...I just can't bring myself to even try it.

42/365

This week ended up being insanely hectic. Most days we didn't know if we were coming or going and I will admit to trying to pass off veggies and dip with a side of eggo waffles as supper one night. I am only too happy to see the weekend and it's lack of all things scheduled. Instead of doing homework (of which I'm ridiculously behind) Trent and I decided to crack open a bottle of wine and do nothing at all. It was nice.

The one perk to all the chaos - I have yet to take down my backdrop from a session this week...so you can see the bottle and glass and not the mountain of laundrey waiting to be folded on the other side. :)

41/365

This morning I got to lay back, put my feet up and do absolutely nothing for two and a half hours. It might have almost been relaxing......if it weren't for the fact that I was in a dentist chair for a root canal.

40/365

They never come on the good days. The times when her sister is happy and full of smiles, eager to read stories and be entertained by puppet shows and games. On these days there is simply no time to give it a second thought. But, on the days when Tatyanna is quiet, her smiles wan and tired, she asks.

"Why?"

"Why does Tatyanna have to have Battens?....Why don't I have Battens? If I had two little pieces, would I be like Tatyanna (our way of explaining autosomal resesive genetics to a 5 year old) What if her brain wasn't sick? Why can't the doctors just fix her? Will she ever be able to walk and talk again?"

We answer her questions as best as we can, knowing that it's only a matter of time before she will ask again. After all, there is no good answer. Nothing to make the understanding any easier.

And so, we encourage the kids to keep asking questions, to never accept "what is" and to always hope for something better. A cure will be found and someday no family will ever have to face the horror of Battens. I believe this with all of my being. But that cure will only come because people continue to ask, "why".

39/365

To use a phrase from one of her favourite shows "She makes my heart feel super happy..."

38/365

Just a few from a workshop that I'm taking. It's amazing how much more receptive Lexi is to having her picture taken when there's crafts and candy involved!

New website!

Tatyanna's new website is finally live!

www.tatyannashope.com

The tatyannashope.ca site should come down and make the switch at some point today....maybe. It's funny how customer service deteriorates when you are leaving a service provider.

37/365 Unfootball Super Party

"Who needs football when you have good friends and good food." There are many things that I love about my friend C, the fact that she is as much of a foodie as I am is one of them. :) When she made a facebook post expressing disapointment that nonfootball people miss out on an afternoon of fun and artery clogging goodness, we decided to start a new tradition: The Unfootball Super Party. All of the awesome food with none of the football. Does it get any better?

If you haven't tried the Pioneer Woman's Mexican Layer Dip you need to do so...right now. Seriously. This is coming from someone who thought they hated guacemole (use her recipe with pico de gallo as it is so very amazing). Just drop what you are doing and head over to the grocery store and pick up the necessary ingredients because you taste buds have not truly lived until they have been through this gustatory experience. I have never before been compelled to break out into YoGabba Gabba's "There's a party in my tummy..." before and while I managed to refrain, the thought did cross my mind. It is that good. And the awesome thing is, it has all 4 food groups covered so you could pretty much live on it....which I just might.

36/365

Today was one of those rare days where I found myself wishing for the compact simplicity of a point and shoot camera. Juggling a camera bag, an energetic 5 year old and pushing a wheel chair makes for some intersting moments when in a crowded location! Since Trent was working and the older kids were otherwise engaged, I decided to put off housework by taking Tatyanna and Lexi to one of the cultural pavilions at our city's annual winter festival. We decided to hit the Irish pavilion first with the thought that we would move on to others but Lexi was having too much fun dancing with her friends and watching the various acts that we stayed put. Even Tatyanna got in on the excitement and really enjoyed the music. At the end of the night I had two super tired girls who were more than ready for bed. I can appreciate that. :)

***

Just wanted to share a list of the current/active online auctions/fundraisers that are being done to help Tatyanna. I feel truly humbled to be surrounded by such awesomeness.

http://www.facebook.com/#!/CynthiaKorman.Photography.Design

http://www.facebook.com/pages/Tatyannas-Hope-bridal-auction/192095587485557#!/pages/Tatyannas-Hope-bridal-auction/192095587485557 (put together by Carleigh Babiak Photography, Mandy Wark Photography and contributed to by many differnt businesses)

http://www.facebook.com/pages/Tatyannas-Hope-bridal-auction/192095587485557#!/pages/Prep-N-Pretty-Bowtique/110297685658485

http://www.artfire.com/users/mv

Also thank you to EDG Photography, Stacey Luce Photography and Amanda Lazarski Photography, your support means so much.

35/365

The time is high noon but, snuggled deep into a nest of down and fleece, there is simply no incentive to leave the dream world behind.

34/365

Coming....just as soon as I can upload off Trent's iphone. :)

33/365

Pehaps it was the time spent pouring over old photos to get Tatyanna's new website ready to go live or maybe it was the amazingly supportive and touching emails that I have received over the few days but tonight I find myself grateful that Trent has decided to cook beer braised short ribs in all their pungent, oniony goodness (at least I think they're good....at any rate, this vegetarian can certainly appreciate their awesome, aroma)

***

The following picture is a very accurate description of how Lexi feels about my current photography workshop. Apparently I'm going to need a whole lot of gummy bears if I have any hope of getting this week's assignment done!!

32/365 Flash back on the 1st....

Wow! I've actually made it to the one month mark!! I've decided to change things up on the first of every month, admittedly this is due in part to my computer issues, but it seemed like a fun idea. The first of every month will now be "flashback on the first" and will feature an old photo.....probably taken with a kodak easy share....or maybe even my trusty rebel (complete with motion blur as I was often shooting with shutter speeds of 1/50...oi!)

When Tatyanna was first diagnosed I broke into a thousand pieces and there will always be a part of me that stays in the past; a place where a little girl could twirl for hours in a purple ballet skirt and run and climb with her sisters in the park. The past is where a big brother would sit with a pigtailed sprite and her collection of plastic horses; where they would create elaborate adventures for the curmudgeonly Mr. Pony and his friends that almost always involved a chase scene and a rooftop rescue. The past is where where my sweet girl would shower my cheeks with her wet kisses and once met her daddy at the airport, shrieking his name as she ran to him after a weekend away. Her exuberance was so great that strangers stopped mid hustle to watch, smiling as a little girl was swept into a daddy sized bear hug.

On the first of every month, I want to acknowledge what was and the journey that we have been on. I want Tatyanna's story to have beginning.