Friday, January 14, 2011

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.



  1. Precious, precious, precious! I love all of them along with your blog posting. We have had a couple things arise in our family as well and you are right when you don't take them or anything for granted. Beautiful photos!

  2. FUN photos! I love that she's in a bathing suit! And what an incredible milestone for you and your family to reach. Thank you, today and everyday, for sharing your story.

  3. I love Lexi, she is such a big personality! These pictures are beautiful (and cool paper by the way).

  4. What a fun way to use seamless!! Gorgeous pictures, and I feel like I know your sweet girl through your words :)