Friday, December 31, 2010

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.


  1. Excellent idea for documenting. Happy to hear things have been positive. I am one of those people who awaited news, for the opportunity to see the spirit fight, even when "the flesh is weak".

  2. Thank you Eric. I think that it was actually your comment on my fb photography page that gave me the necessary nudge to start updating again. I really appreciated hearing that someone outside my immediate circle wanted to hear how things were going.