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.

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.