15/365 Neighbourly awesomeness

Earlier this afternoon I looked out the window to see the man who lives across the road snowblowing our driveway. We've lived her for almost 2 years and until 2 days ago, I had never actually met him. Because of all the recent media coverage, he had become aware of Tatyanna's situation and wanted to help. I know cookies aren't much but I really wanted to show him how much we appreciated his thoughtfulness.

Newly arrived props + no one willing to model = contrived pictures of cookies :)

14/365 As it should be....

There are many words to describe Lexi, boring is not one of them. This was my facebook status this morning:

"Scene for this morning: Lexi happily stirring things into a cup singing a tune about mixing and cooking.....she takes a big swig and splutters, " oh YUCK!!! So so gross....that was deeesgusting! Hmmmm, that didn't work out well at all!" and then she scampered off. That's when I noticed a container of shrimp delight turtle treats sitting on the table.......I just can't bring myself to ask.

Lexi is 5. She goes to kindergarten, takes ballet and dreams of fencing against the big kids. She has fallen in love several times and has been known to wake me up wondering how she will know who to marry. She has hopes and dreams. She has a future.

When Tatyanna was diagnosed with Batten's we were told that we should have the other children tested as well. Because the older two were long past the age of onset, we had little concern that they would ever be more than potential carriers of the faulty gene. Lexi, however, was 2. It was entirely possible that she could be asymptomatic and harbouring the same disease that was begining to show in her older sister. It was not a decision that was made lightly. If we had her tested and the results were positive, it meant an agonizing wait for the disease to begin to manifest itself in our precocious tyke. Our other choice was to do nothing and live with the threat of what was possible.
We chose to do nothing.

5. It was the milestone age in my mind. Once we make it to 5, I can stop worrying. For 2 1/2 years we waited and wondered, never really allowing ourselves to truly think about it. Every time Lexi did something that seemed "off", fear would creep in, leaving us cold around the edges. Finally, this summer, 5 was here and in the days since I have begun to feel the clouds part and the bands of worry start to ease. Suddenly the future seems a little brighter, plans a little less tentative. In my world, where the unthinkable does happen and parents do receive second and third diagnoses, this is something that I will never take for granted. There are days where she drives me crazy with her nonstop questions and ability to create monumental messes, days where she embraces the roll of pesky kid sister a little too heartily. But through the irritation, there is always a part of me that smiles...because this is just as it should be.

13/365 At the end of the rainbow.....

Just because one can't wear shoes anymore does not mean their feet have to be boring!

This morning found us at Tatyanna's pediatrician's office, bright and early, for a suspected UTI....it's amazing what a dose of antibiotics can do! She's been back to her wiggly, giggly self ever since!

12/365

At some point, I know there will come a time to stop fighting this battle. A time when we feel the need to focus internally on our little girl and just let thing be. And while it will be an acceptance of sorts, we will never give up. Until a cure is found and no child has to endure the ravages of this brutal disease, the war will continue. But, that moment is not now. Today in an attempt to put a face to the endless letters that we have written (and apparently have never gotten past the various secretaries and aides) we attended an open house that the premier was hosting. Knowing that the media would there in abundance and that it wouldn't have been prudent for the leader of the beleaguered NDP party to completely ignore us, we hoped for a few moments of his time. While we don't expect anything to come of this meeting, I'm glad that we had the opportunity to have Tatyanna's story told and truly appreciate that he did take time out of his busy schedule to talk with us.

11/365 Domo Arigato, Mr. Roboto.......

I should not have typed that in as my post title as I can not, for the life of me, get the song out of my head now! Lexi has always been fascinated by all things robot so when her dad was shopping the other day and found several robot making kits he couldn't resist.







At this point it occured to me that I do, in fact, have batteries in my speedlite and don't have to be shooting at ISO's of 3500. :)

10/365

I'm not sure if there is anything more nerve wracking then waiting for the phone call that will commence a live, on air radio interview. I was given a window of time during which they would call and a vague idea as to the questions that would be asked. Any organized person would have used that time to prepare, to go over the questions and determine the best possible answers. That was my intent, it truly was.....but did it happen? Not so much. Instead I paced the floor in nervous silence, praying that I wouldn't pass out or acquire a sudden case of the hiccoughs. I may have recited some daily affirmations a la Stuart Smalley with the hope that they would somehow inspire confidence and reduce the waver in my voice. When the phone finally rang, I think I jumped 3 feet in the air. Praying that no one could hear my heart, which was hammering its way out of my chest, I took a deep breath and began. After all, this isn't about me. It's about her. It's about my girl who has so much fight and spirit left but no means to win this battle. If I don't fight for her, who will? We've been dealing with the government for the last year trying to create a spark that will inspire change. For kids like Tatyanna, there is nothing. Parents are given a diagnosis and told home to go home, enjoy their precious babies and wait for an end that will come far too quickly. We were recently encouraged to seek out a referral to the local palliative care service. We were told that this was the best that could be done at this time. This just isn't good enough. It has to be better. There has to be more. Our attempts at creating policy change to open doors for new research have been futile thus far and so the tactic has changed. We've put it out there that we are hoping to return to China for a 3rd round of treatment since there is nothing available here in North America. We know that it's not a cure, that it will only buy us time. But, right now, time is the only thing I want. I'm just not ready to let go. The improvments we saw on the previous trips were phenomenal and I would love to try once more. Unfortunately that trip comes with a staggering $50,000 price tag and we are left wondering how to proceed. Prayer for wisdom would be very much appreciated! At a recent appointment with a metabolic specialist she made the comment, "I can't imagine parents doing more for their child than you two." This was interersting as I can’t imagine doing any less.

9/365 - Sunday afternoon snuggling....

It's only day 9 and once again I have a picture of my couch. But, it's the weekend, and what else does one do on a frigid Sunday afternoon?

8/365 - Good friends, good food, good times. What more could a person ask for?

Tonight we had friends over for hot pot, a meal that we used to enjoy going out for in Beijing. To say there was much food would be an understatement! Even the kids got in on the fun and were all very dedicated to eating with the modified chopsticks that Trent made. It was one of those evenings that, when everything was over, you're left with the good feeling that only a night of fellowship with friends can provide. I truly appreciate the normalcy of our relationship with the B family. When you are living with a child with medical issues, this isn't something you take for granted. Tatyanna's condition is awknowledged and accepted but isn't always the focus. It's just "part of the fabric". Being able to have a life outside of Battens is something that I feel is so very important to our ability to cope. An evening spent laughing and talking with friends can go far in keeping us in the fight.
C- thanks for being you. :) We had fun!

In keeping with the "hot" theme, there were even a few hot dogs, just to make sure that there were a few familiar items for the kids.

7/365

It has become a commonly accepted fact that if Tatyanna has an appointment in the city, the weather will be terrible. If it is summer, it will invariably rain at some point during the trip, hail is to be expected. If it is winter, it will almost certainly snow. Today was no exception. It's nice to know that there are some things in our life that stay consistent. :)

The bi-annual appointment with neurology was positive and Dr. S is happy with how Tatyanna is doing at the moment. There's really nothing new to report. We were pleased to hear that her kidney ultrasound results came back normal and the plan is to keep doing what we're doing.

This is just a bonus photo for today. I had left the room for a moment to prepare Tatyanna's meds and came back to find Lexi snuggled in bed, "reading" her a story. I need to remember that my camera has video capability because this would have been a priceless capture. Lexi's version of the chosen stories was rather entertaining!

6/365

Nothing will motivate a person faster to clean the house than having a news station call and say that they'd like to cover your daughter's story.....in 2 hours.

I also feel the need to sheepishly admit that the corner of wall behind the cupboard has gone unpainted..... for over a year. I think maybe I should get on that.

5/365

I often wonder what goes on behind those big, dark eyes. It's been over a year since I last heard her speak. And, although she is not silent, our conversations have definitely changed. I wish for one moment that I could get inside her head, to know what she is thinking. There are days now where she barely makes a sound and it takes a great deal of effort to coax a response out of her. Days where her smiles are faint and slow to appear.

Although I do have to work harder.... moments like these become all the more magical.
( I may or may not have had to resort to chimpanzee noises to get this one.....no I will not demonstrate them for you.)

Lately Tatyanna has taken to getting up at 4:00 am. She thinks it's great fun and breaks into giggles when I tell her to go to sleep. Then, once I have had enough coffee that going back to bed is impossible, she does this:

4/365

Just in case I ever give the impression that things are gloomy over here, I can assure you that, although we have our moments, usually they are anything but. :) With 4 kids in the house, there is plenty of humour. Often of this variety.....

3/365

When you have a child with a degenerative condition, memories are a funny thing. Depending on any number of factors, they have the power to make you smile or cut like a knife. Sometimes they do both and you find yourself looking through a window to the past with a smile on your face and tears streaming down your cheeks.

Tatyanna was always perceptive, eager to help and always wanting everyone around her to be happy. Knowing that her mom was a coffee junkie (although I think afficiondo has a much nicer ring) she would drag a chair over to the coffee pot and fill up a mug full of what was often yesterday's brew. Once the cup had reached a level that could only be described as precarious, she would carefully carry it over to wherever I happened to be.

"This you foffee mommy."

These were her words every time, said in her chirpy little voice and always followed by a slightly more emphatic,

"you like it!"

She would then stand there, brown eyes expectant, and watch while I choked back a sip or two of the cold sludge. I never had the heart to say anything. Now, it's rare that a day goes by without either Trent or I offering the other a cup of joe without saying,

"here's you foffee....you like it."

Perhaps it's just our way of hanging to the girl we once knew... because forgetting is something that truly scares me.

2/365

It can be very easy to feel overwhelmed when I think about everything that I feel I should accomplish in a day. Then I look down and see this.....and suddenly the little things don't seem all that important anymore. Dishes and laundry will always be there. I'm fairly certain they can wait a little bit longer.

1/365

I'm not sure exactly how this project will unfold....but I'm hoping that it will be an interesting journey!

These two have always had a special relationship. Despite his numerous interests and ever-increasing social network, the first thing Keirnan asks when he comes in the door is "How's Tatyanna....is she doing ok?". His concern for his little sister is obvious and I love watching them interact. When it would be easy to just sit and share space while playing the iphone, Keirnan gives a running commentary on what he's doing. He pauses to ask her questions and then carries on as though she answered. Tatyanna adores him. Sometimes all it takes is to say his name and her face will break out into the biggest smile. He's the one that would sit for hours with her, playing computer games that can only appeal to little girls and never fails to make her giggle with his repertoire of zombie noises. While a part of me grieves the loss of the relationship that will never get to exist between them, I can't help but marvel at the awesome bond that they have in spite of it all.

It's definitely been a while since I last updated and for that I apologize. It's funny how 8 months can be both an eternity and not nearly long enough. Since I last updated, there have definitely been many changes. Tatyanna hit a rough patch in the early summer that robbed her of most of her strength and she can no longer sit independently or even hold her head unsupported. Her seizure activity has definitely increased and just before Christmas we made our first trip to the ER in a long time. I don't think watching your child seize is something a parent can ever get used to. Even with 3 years of experience, it still leaves me shaken. A one night stay on the pediatric ward and some med changes and things seem to be more stable. She's still "twitchier" than I would like but the complex partials and tonic clonics seem to be held at bay. But despite all of this, Tatyanna continues to amaze me on a daily basis. Even though her condition has definitely declined, in many ways she is still the same Tatyanna that she has always been. We are no longer sure how much eye sight she has left but she continues to giggle through her favourite shows just as she always has. Books also remain a big hit and she loves nothing more than snuggling up with someone to read through a Jillian Jiggs...or three.

To anyone on the outside, these last 8 months probably seem pretty depressing. But in some ways, it has been the opposite. Despite all that is so obviously wrong I am amazed by all that is right. I am continually blown away by the awesome people that have woven themselves into our life. People who so obviously care for my daughter and want to make a difference. Because of the hard work of a group of dedicated individuals, Tatyanna continues to attend school several days a week. She is currently in a regular grade 2 class with the help of a couple of support aides. Although, at a grade 2 level, the work becomes a little more demanding and Tatyanna and her aides often float around the school looking for where ever the fun is happening. The kids at her school are equally amazing and I often find pictures or notes tucked into her bag, drawn by fellow students.

***

I haven't had nearly enough coffee to come up with a good segue into this next part. Tomorrow marks the start of a new year and with it the requisite resolutions and commitments. Because my journey as an aspiring photographer and a mom to a Battens kiddo have often been so closely intertwined, I am planning to embark on a 365 project. The goal is to take one picture every day for an entire year. Not only will it force encourage me to pick up my camera every day but it will also serve as a way to document our life as a family who is affected but not defined by Batten Disease.

Author -Unknown

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, “this soul will one day need extra care and needs”, I still would have chosen you…

If He had told me, “that one day this soul may make my heart bleed”, I still would have chosen you…

If He had told me, “this soul would make me question the depth of my faith”, I still would have chosen you…

If He had told me, “this soul would make tears flow from my eyes that would overflow a river”, I still would have chosen you…

If He had told me, “our time spent together her on earth could be short”, I still would have chosen you..

If He had told me, “this soul may one day make me witness overbearing suffering”, I still would have chosen you…

If He had told me, “all that you know to be normal would drastically change”, I still would have chosen you…

Of course, even though I would have chosen you, I know it was God who chose me for you…

It's strange, being the parent to a Batten kid -you go along thinking that you're really doing ok and then you get handed a paper at school to fill out and on it is the question "What do I want to be when I grow up" and it's like you've been sucker punched.....so I answered Canadian Olympic show jumping team member - I figure if we're going to dream, it might as well be big.

Just a couple of quick pics to show you how much Tatyanna has improved over the last few days! Although she is definitely no longer a morning person, by noon she is becoming more and more like the happy, perky little girl that we used to see. The school has been awesome in accommodating our new schedule and Tatyanna has really enjoyed her last few afternoons with her class. We are gradually starting to incorporate more PT and stretching into her daily routine and while I can't say that she particularly enjoys it, she is responding. We've been trying to get her up in her walker for short bursts during the day as she seems to really enjoy the freedom of careening around the kitchen. The cats, however, do not share the same appreciation for her newfound locomotion and much preferred the warm lap of the sedate Tatyanna over fleeing the kitchen for the sake of their tails. The increased activity does leave her exhausted and 20 min in the walker usually means and hour in the beanbag chair recovering. But, she's definitely improving. Truthfully, I wasn't sure that she'd ever hold her head up again so anything that we see now is a huge bonus.

love

Definition of sisterly love - taking the time to cover your sister's eyes, because she is no longer able, before your own during the scary part of the movie- Disney's new frog princess. I wish I had my camera for that moment, it was priceless. (I may or may not have had to leave the room because I got all teary eyed.)

two steps forward, three steps back....

Just as we feared the effects of the anaesthetic took their predictable toll on our sweet girl. Every time we have had her put under before we noticed, within the weeks following the procedure, a drastic increase in her seizure activity. This time was no different and we were forced to make some necessary med. changes. Unfortunately these changes aren't without their effects and there are only a few hours in the afternoon where I could call her alert....ish. We are hopeful that she will adjust to the new doseage and perk up a little very soon! We are going to try taking her to school for a couple of hours in the afternoon tomorrow. As much as I would love to keep her all to myself, I know that she really does enjoy the other kids and they have really been noticing her absence in the classroom. So, fingers crossed and praying that tomorrow will be a better day...at least for the afternoon. On the upside though, her seizure activity has returned to its previous level of acceptability.