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.

31/365 Mean people suck!!!

I don't have time for this! I am however thankful that I have online back up and an external drive - see being paranoid pays!! Although the contents of my computer now resemble my teen son's bedroom, nothing seems to be lost....it's just very messed up. Fingers crossed that it will be business as usual very soon.

30/365

There is nothing beautiful about what Batten Disease is doing to my little girl.

And yet, when I look at her, all I see is beauty.

29/365

When I was little someone told me about what they termed "magic numbers". The concept was simple, every time you happen to see the clock numbers all read the same, you close your eyes and make a wish. The wish had to be personal and couldn't be something broad like world peace. I remember thinking that this was a great idea....anything to increase the number of times one could make a wish in the day was fine with me! Eventually the magical thinking of childhood faded and although I stopped making wishes I never forgot about the idea.
When Tatyanna was first diganosed I remember standing in my bedroom watching her play with her ponies on the floor. As the digital face on the clock changed to the numbers 2:22, my mind was drawn back to a time when wishes were possibilities waiting to happen (although, at this same point in time I also believed that pirates really did sail around in big ships with parrots and I had every intention of becomming one when I grew up, so that tells you something) At that moment I decided to take a different approach. Instead of making wishes, I would think of something that I was thankful for. A task that becomes significantly more difficult when your child has just been handed a death sentence. It may sound cheesy but truthfully, it has been a good exercise for me as I am continually reminded of just how good I have it.

Tonight I sit here typing, a teary eyed mess. Over the last 24 hours I have been completely overwhelmed by the number of people that are coming together to support my little girl. I'm speechless (which doesn't happen all that often) and touched at the outpouring of love and generosity. Many of these people have never met Tatyanna but heard her story and want to help. The general attitude is very much one of "We can do this!" There are no words to adequately express my gratitude. We are thankful, so very thankful.

28/365 - quotes from this side of normal

"Mommy, Tatyanna's breakfast stopped.....can someone come and make her eat again....?"

27/365

"We have to do a project on diseases for school....guess what I picked."

"Ebola?"

She casts a whithering look, " No...try again"

"Hanta virus......rabies......mono.....??"

"Seriously mom.....you know what I picked. And since it's for a project, I want all the information that I know you're not telling me."

26/365

The perfect pick-me up after a rough day.* I'm not sure which I love more the phonetic spelling (which blows me a way, just a little....when did she grow up so fast?) or the fact that Lexi drew her dad with no legs and a crutch. At his protest, she went back with a a marker and added some legs after the fact, but you can still tell what her original intention was. I have no idea as to her thought process on that one....but it definitely made me smile.

*rough day having nothing to do with Tatyanna, who had a super giggly awesome day at school and everything to do with things like dentists and setting up appointments for a root canal.....ugh

25/365

Just because her sister can no longer play the way she once did, does not mean they can't still have fun!

24/365 Winterpeg

There are certain parts integral to every vehicle that render it completely useless when they cease to function. I will be the first to admit that I know very little when it comes to the mechanical components under the hood. I could change the oil or a tire if I had to and once had a Mustang that had to be started with screw driver but truthfully, that's about the extent of my limited knowledge. That said, when our van started making a funny sound a few weeks ago, I knew that it was probably a bad thing. When the funny sound turned into a van that suddenly seemed to flake out and refuse to choose a gear, 'probably' was elevated to 'most definitely'. Indesisiveness in vehicles is never a good thing. Transmissions....they would be one of those integral parts. So instead of a productive day conquering Mt. Laundry, we drove to the city to pick up a new transmission and drop off Lexi's passport application.

Winterpeg - a very fitting moniker for a city that is currently covered under a layer of ice and snow. Redlights were reduced to mere guidelines and the attitude was really more one of "Stop.....if you can...." Fortunately we made it there and back safely - which couldn't be said for the 3 SUV's that were in the ditch or the overturned semi-truck that was blocking one lane of the highway. Tatyanna however, was content to leave any worrying to the grown-ups and spent the trip snuggled in blankets in the back seat watching cartoons.

Dear Summer....I miss you.....please come back!