I have a hard time with posts like that made last night. Usually I hit the delete button within moments of making the entry and no one is the wiser. Parenting a child with a terminal illness is complicated. There are good days and there are bad days. While the pain never goes away, you learn to live with it. You look past it and learn to function in an altered sense of normalcy. With Batten disease, the grief process doesn't end. Every time your child loses another skill or ability, it starts again. There are days when the sense of loss is so profound that it's almost tangible. I miss my daughter and yet she is here beside me. I miss the little girl who used to spend hours on the escalators at the Edmonton mall before it opened in the morning. I miss her never ending energy and sense of fun. I miss the way she would lug all of her stuffed horses around the house and had them named according to colour or size....white white, brown white, bigger.....In some ways, I feel guilty for feeling that way. Although the Yanna of the past is gone, I appreciate and cherish the little girl that's still here. In many ways, she's still the same, only a more muted version of her previous self. She is still loves her horses and watching Dora, she still has her infectious giggle, strange sense of humour and a hug for everyone around her.
For me, in order to stay afloat, I have to sink once in a while. Last night was simply a very bad night after a long string of not so good days. Today,without the weight of holiday expectations, perhaps things will be different.

Ghosts of Christmas past....

It echoes in the dark corners of my mind, the clatter of small foot steps on the hardwood stair case followed by an excited chirp, "Mama!!! Happy Birthday!!!!" She was so excited. Her grandma from Alberta had just arrived, it was Christmas 2007. I have relived this moment a thousand times throughout the holiday preparations and as much as I try to feel the warmth of a happy memory, it cuts like a knife and leaves my soul bruised and aching. Tatyanna was always the life of a party and could light up a room with her effervescent demeanor. Christmas to her, was just a giant birthday party in which everyone got to celebrate. When the awaited morning dawned, far to early for my liking, she eagerly opened her presents and spent the remainder of the day blissfully playing with an varied assortment of horses and ponies. Her seizures were under control, the dr.'s reports had come back clean and we were optimistic that the worst was behind us. This year, the festivities and the days preceding were a little more subdued. While I have tried desperately to put on a positive face and feel grateful for the things that I do have, I can't help but grieve for that which we have lost.
Emotionally, I am raw and I feel guilty for it. 10 minutes into the requisite family gathering I wanted nothing more than to crawl back into bed and pass on the day entirely. Gifts were opened, conversations happened but truly it was nothing more than a performance worthy of an Emmy. At one point one of those mass-sent Christmas letters was read in which the author had prayed for someone to come and do the initial training on several of her family's pricey warmbloods. God had, apparently, delivered in form of a delightful young family from Australia and the problem was duly solved. I know that no harm was meant in this telling and that it was supposed to be an inspirational sort of tale but it left me reeling. What am I doing wrong in that my simple prayer for a day in which my little girl is not wracked by seizures goes unanswered. How is it that a $30,000 horse takes priority over a 5 year old child? All I wanted was Christmas. The fact that we have no idea what condition Tatyanna will be in by next year, made this one fairly important to me. Unfortunately, any fun Tatyanna had was marred by a continuous stream of small seizures and significant ataxia. By afternoon, she was well acquainted with grandma's frozen peas and had a face reminiscent of a match-losing pugilist. The day was truly exhausting both physically and emotionally and I am truly grateful for these moments where the house is relatively quiet and free from chaos.

I apologize for the less than jolly tone of this post and do wish you an honest Merry Christmas and a safe and happy holiday season! I promise to stop wallowing.......very soon.

Things you'd prefer not to hear from your child....all in one day

1. canyoutakemepottycanyoutakemepottycanyoutakemepottycanyoutakemepottycanyoutakemepottycanyoutakemepotty.....nevermind
2. I'm a big girl...i fixed it all by myself....with grampa's tools!
3. Wanna do magic mommy? Come and find the turtle....he disappeared!!!
4. Come and see what happened.....there's POOP!!!! It's all over the kitchen floor!! I think it was Winston.

Life with a 3 year old, it is anything but boring.