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Flash back on the first, May 2008

Friday, March 1st, 2013

It starts every year about this time, the drive to go back; to return to the hazy, cocoon-like embrace of Tiantan and escape the harsh light of reality.

To watch the sun cast longer rays on the hillside and feel the first warmth of spring feels foreign and wrong.  Spring for me has come to mean cherry blossoms and gritty skies.  It means endless days filled with therapies with the occasional reprieve provided by an outing to the market or park.

We should be planning and making preparations.

For the second year in a row, we won’t be making the return trip to Beijing.  The back that we long for no longer exists.  The therapy is different, the hospital is different.  Returning would only provide more risk than benefit and  we aren’t about gamble with  Tatyanna’s life.

But it doesn’t erase the feeling of longing.

For us, back means fighting.

 

Flash back on the first – October 2006

Saturday, December 1st, 2012

Impish grin, eyes full of mischief and a plastic horse in hand.  This was taken when Batten Disease was only the faintest of whispers that something was not quite right.   I snapped the photo as we were leaving Edmonton; U haul filled with all of our possessions, eager to start our new life back in our home province.  One final photo from a chapter in our lives that was coming to a close.

The day before, Tatyanna had what we would later determine to be her first major seizure.   We were on one last trip to the Edmonton mall when she suddenly threw up, was non-responsive and stopped breathing.  We pulled the van into a parking lot and called 911.  Within minutes, a plethora of emergency vehicles arrived, lights and sirens blaring.  Although Tatyanna began improving within several minutes, we were whisked off to the Children’s Hospital where they couldn’t find a thing wrong with her.  No one was certain as to what exactly that episode was but the consensus was that she had picked up a virus and the brief (although brief feels like an eternity when your child is blue) apnea  spell was caused by the vomiting.   We were released with a recommendation to follow up with a doctor at some point and went home to continue packing our house.

 

 

 

flashback on the first – spring 2005

Saturday, September 1st, 2012

 

We had left her with her papa while Trent and I ran on a quick trip to the store for some groceries and came home to find our little girl, chin gaping wide open, completely unbothered by that fact.  Little did I know that it would only be the first of many injuries for our adventurous sprite that would require me to hone my mad steri-stripping skills.   Today, there is only the faintest of scares.

My sweet girl, if only I could fix the one thing that truly matters so easily.

flashback on the first – fall 2003

Wednesday, August 1st, 2012

People are often skeptical when I share how Tatyanna started out so completely normal and wonder how it’s possible that we were  so completely unaware.

The truth is, she was perfect.

She still is.

Flash back on the first – Canada Day 2006

Sunday, July 1st, 2012

Six years later the kids still talk about Canada Day at “the lege” in Edmonton and how much fun that day was.

June 1-3 is Batten Awareness Weekend!

Friday, June 1st, 2012

By the end of this weekend there is a good chance you will be tired of the links that I will be posting.  I am asking you to please watch them anyways and pass them on.   At the end of this weekend, your lives will continue and Batten Disease can fade away.  For these families, the fight will continue.  Our stories need to be heard.  Our children need a voice.

To kick off the weekend, I’m sharing the video that I made during the first year of Tatyanna’s diagnosis. Please take a moment to watch. Over the last 4 years we have watched as our daughter has lost the ability to walk, talk, eat. Although she still has some sight, she could be considered legally blind. The little girl who once danced and sang from the moment her day started can no longer even hold her head up.  On a near daily basis we deal with seizures, painful muscle spasms and a body that just doesn’t want to function properly anymore. Battens is cruel.  It takes away the childhood before finally taking the child.

But Batten Disease has not taken her spirit.  Ask anyone who knows her.  She still sparkles.

flashback on the 1st

Tuesday, May 1st, 2012

Let’s do something different this month.  Instead of a photo, I dug up a very old blog entry from our life on the other side.   I can still remember vividly how utterly crazy and overwhelming that day felt….it kind of makes me giggle now.

Date: June 13, 2006

It was one of those parenting nightmare kind of days. In the morning I dropped Trent off for his yearly week long work “holiday”. He calls it work but anything that involves having time to oneself, the ability to sleep uninterrupted, eating food that someone else cooks and not having to clean anything is a holiday in my books.

The day itself was not so bad, and left me feeling optimistic about the rest of the week.   But, around 4:00 in the afternoon,  it all went drastically downhill.  Tatyanna has had a rash for the last several weeks. I have tried every natural treatment that I can think of with no success. She was getting to the point where she was scratching her skin raw. I, feeling good about the day, decided that enough was enough and perhaps it was time to consider seeing a regular doctor for some relief of prescribed variety.  I called health link to determine if there was anyone close, taking new patients and was given a list of names to chose from.   Dr. Adams. I figured that it sounded like a pronounceable sort of name and was optimistic that perhaps he spoke English and drove the 30 minutes to the west end to see him.

2 hours.  I waited in a crowded waiting room with 4 kids for 2 hours. It was NOT fun.  Tatyanna kept trying to take her clothes off (because they were itchy) and make “snow angels” on the floor. We read every book in the waiting room, played eye spy with the older two, pretended she was a bear in a cave under the chair and counted everything we could think of. I used all of my usual tricks and then some but after two hours, nothing works.  By the time we got to enter phase two, also  known as waiting in the actual office, I was peeling her off the walls.

At this point I was thinking that the change of scenery might be a positive change and kept Tatyanna busy looking at the bone charts and things on the walls. Then Lexi, who never spits up, puked all over my foot. I was wearing sandals.  Once the doctor came in, it was obvious that English was not his first language (the name Moufasa on the wall gave me the heads up)….or even his second. He barely understood me and didn’t understand Tatyanna at all. I still felt ok about the whole thing…until he started sporadically saying “help me!” and pretending to cry throughout the conversation. Apparently he got a kick out of Lexi’s horrified expression.

After a bizarre checkup, he announced that it was either ringworm or eczema. Excuse me ??!!  As someone who grew up on a farm, I’m fairly familiar with ringworm and as someone who also suffers from eczema, I’m familiar with that too. I felt that given the fact we currently live in a city and have not been near any animals other than the dog in a very long time, the latter diagnosis was probably more correct. I suggested that too him and he agreed. A script for cortisone cream and a few more rounds of “help me” and we were out of there. Once at the medication counter, Tatyanna decided that she’s had enough and started alternately trying to bite me and scratch Lexi. I put her down and ask the older two to watch her. She bolted, forcing me to leave my place in line and chase her down. Fortunately she is predictable and we followed her right to the  toy department.  I gathered Tatyanna on one hip, Lexi on the other and returned to the pharmacy to stand at the end of the growing line.  McDonald’s drive through began to sound like an appealing supper time option…and I’m a vegetarian.

Once home, the older two kids decided that they no longer like each other and resume their regularly scheduled routine of incessant bickering. I finally got them in bed and struggled for another several hours to get the the younger two to settle down for the night .

It was a very late night. Trent called around 10 to see how we were doing and told me how he had spent his evening going out to dinner, watching TV and practicing his kanji.

I was very happy for him.

 

 

Flashback on the first

Sunday, April 1st, 2012

Tatyanna and one of her grandmas, April 6 2006

There have been many changes over the last six years but one thing has remained constant.   Every moment of her day is spent surrounded by love.

flashback on the first – September 5th, 2008

Thursday, March 1st, 2012

flashback on the first – March 2008

Wednesday, February 1st, 2012

This photo was taken at the end of a truly amazing and bittersweet day.  On March 25, Children’s Wish Foundation granted part 1 of Tatyanna’s wish for a pony.  We spent the day at a farm going riding and then went to a tack store to pick out a saddle, bridle and accessories for pony and rider.    Part 2 was granted on our return from China when we were better able to give a new pony the necessary time and attention it needed.

To see the rest of her wish day follow this link

 

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