23/365 Sunday mornings....

22/365 - the ball...it is rolling

Once upon a time I made this post: click here. Add almost 3 years, combined with a click happy mom and more photography workshops than my daughter would like and you have a child who is only too happy to sit on the stool and stare warily at the photographer. :) As I look through our passports I am in awe with just how small my girls were, their big eyes peering out from beneath whispy bangs and cheeks that could only be desribed as cherubic. They were just babies. In some ways we all were. Although the shock of Tatyanna's recent diagnosis had worn off, numbness had set in and it would be a very long time before we would truly experience the reality of life with Battens.
And now, here we are, nearly three years later; trying to plan our third trip across the world, wanting more than anything to make it work one final time. All sense of of naivety long forgotten, we are acutely aware of the daunting task ahead.

Beijing, trip #2- 2009. When we arrived, Tatyanna was unable to walk independently at all. With complete support she could take a few steps but would frequently stumble and fall. This was taken during week 4. Truly there are no words to describe how it feels to watch your little girl walk again.
While I know that the results of that trip can never be repeated, Tatyanna has progressed too much for that, that magnitude of improvement again would go so far to increase her quality of life.

21/365

4:00 a.m.



9:00 a.m.



On the upside, if we do go back to China, jetlag shouldn't be too much of an issue this time!

20/365 - "I love you right up to the moon ....and back."

19/365 sisters....

Dance games on the Wii are simply not complete without a shout-out to the Bieb.....

18/365

My heart is heavy, my spirit tired. Last night our tight-knit Battens community was filled with saddness yet again with the word that another angel had earned her wings. She was only 5.

17/365

Dear Mr. Sketch,

While I appreciate the fact that you market yourself to users of all ages, the fact that you come in an assortment of fun and funky "flavours" does lend a certain appeal to the younger population.....a cohort of indivuals that has been historically proven to express itself through colourful expressions of temporary body art. Please consider this my formal request to add a "washable" feature to your upcoming marker forumlation.

Sincerely,

a mom to kid with a colourful sort of personality

Just when I thought that I was about to come up empty handed in the daily photo department, I came upon this colourful moment. Lexi had apparently come down with a case of the chicken pox courtesy of Mr.Sketch. A cure proved to be slightly elusive and required a little more scrubbing than either of us liked but eventually we were able to get the marker off and Lexi will be able to attend kindergarten tomorrow, pox free.....unlike a certain incident in the past when her sisters got into their dad's Sharpies. I believe that big sister Skylar was the guilty party in this case and Tatyanna was merely a willing canvas but neither was willing to talk about it. Parenting lessons learned - no good can come from quiet kids, Sharpie does not wash off.....for days.

Tatyanna, age 3

16/365 full of beans....

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.