Saturday, October 31, 2009

Happy Halloween! Not feeling it this year. In the past, I went all out sewing costumes for the kids. Some years I was organized and had things done well in advance, other years the costumes went from the sewing machine to the kids' backs and we were out the door. It was sort of rushed and incredibly last minute but I function well under stress so it worked. This year, I just couldn't do it. I could blame the fact that the dog turned the cord to the serger into several piles of plastic and wire but truthfully, I was kind of relieved. All of a sudden I had an excuse that sounded ever so much better than "I don't want to!" This year the reality of Tatyanna's condition is weighing a little more heavily and although we are trying desperately to keep things functioning as normally as possible for the sake of the other kids, some times we stumble. Sometimes the grief that Trent and I carry just weighs too much. Although we keep moving forward, doing the little things becomes so very difficult. House work is neglected in favour of snuggling on the couch watching cartoons and fabric for costumes sits in a heap waiting for another time.

This year I tied dyed a shirt, tacked some flower trim onto a pair of flare bottomed jeans, added some daisies to her hair and Tatyanna was a flower child. I bought some black wings to add to Lexi's tap dance ensemble, put some makeup on her face and she was instantly transformed into a night fairy. Skylar put on last year's costume (Keirnan has declared himself too old for such fun) and we were good to go. The effort took minimal budget and less than half an hour of effort and the kids went out and had a blast and for me, that's what really counts. I want so badly for my kids to experience life as normally as possible for as long as we can. I want them to remember their sister as simply being a part of the family. I want them to remember us having good times because that is what is going to help carry us through when things get tough.

Friday, October 30, 2009

Scene - Lexi, sitting in the bathroom, Halloween costume on for a trial run, staring at her reflection in the mirror with a not so happy expression.

Lexi (brow furrowed): Hmmm.....I look an evil fairy.....

Me (think fast, tread lightly): ummm..... It's Halloween so maybe that's ok?

Lexi : I look like the bad fairy on Tinkerbell and she's not nice at all.

Me : ?? She wears red....doesn't she? Well.....I don't think you look evil. I think you look beautiful! Anyways, do you think that there are only fairies out during the day?


Me: Don't you think that maybe there are fairies that come out at night too?

Lexi (looking skeptical, but interested): Hmm......yeah, I guess so.

Me: Well, if they only come out at night, they are probably doing some super secret, important fairy stuff and don't want to be seen. If they wore any other colour but black then everyone could see them. I think you look just like a night fairy!

Lexi (barely able to contain her excitement): Wow!!! I'm a night fairy......princess!!!!


And that is how to rationalize with a 4 year old. Although I believe the key element is luck and I truly have no idea what I would have done if she hadn't followed along with that train of thought.

2009 11 05_0225

Friday, October 23, 2009

Happy Bday to a pretty awesome person!

*Belated birthday post



It doesn't matter how old you get, you will still be the little girl who liked to order pespi with her hanguber and exclaimed with wonder that there were sparkles and stars shining in her feet after a particularly long car trip. I know that we often have differing opinions on how life should go around here but I just wanted to say that I am truly proud of the woman that you are becoming. You have had to endure far more than many kids your age and I truly wish that so many things could have been easier for you. But life isn't without its challenges and you have risen above and grown into a strong, independent person who has a good understanding of who she is. You have a beautiful spirit and underneath the sometimes prickly adolescent exterior, a heart of gold. I love you much my girl. Happy 11th birthday!



Thursday, October 22, 2009

"it doesn't matter how rough your day was, when your husband comes home and responds to the question of how work was with a stricken look and "I ate muskrat!!!" you have to smile....just a little"

That was my facebook status line a couple of days ago. It quickly became the source of much humour both online and off....most of which was at my poor husband's expense. An online friend even went so far as to helpfully send a link to what has been termed "a once popular and always reviled song"- Muskrat Love by Captain and Tenille. Some have even called it a smash hit, although once you hear it, I'm fairly certain the only connection to that word is the sudden desire to smash the source of the auditory assault. The 70's were truly messed up times. Trent in his typical, easy going manner was good natured about the ribbing. As someone who was a good friend long before he was locked into matrimony, he was well aware that aside from the fact that his wife can barbeque a mean steak for a vegetarian, she is also a complete pain in the butt. Did you know that you can download that song as a ring tone? For a mere handful of change, you can listen to a song devoted to rodent romance every time your phone rings.

It's now been several days since my husband's gustatory adventure and the jokes have faded but do you think I can get that song out of my head? No, no I cannot. *sigh* I suppose I had it coming.

Wednesday, October 21, 2009

Kid of the day


Every so often Tatyanna's grade 1 class has what they call the Kid of the Day. It's a moment where they can celebrate the individuality of their peer and practice their drawing and printing skills. Recently, it was Tatyanna's turn and before we could even get her stuff in her locker there were kids running out of the class excitedly informing us that Tatyanna was going to be that day's chosen child. Truthfully, I had no idea what exactly it meant so I smiled, responded with an enthusiastic "wow! that's awesome!" and went on my way. When I returned to the school to pick her up, I was given a package containing all the drawings that the kids had made. As I began to flip through them, smiling at the kids' burgeoning art skills, I began to notice something that truly made my day. Some kids had chosen to draw the gold ring on her finger, some gave her ponytails, one even attempted to draw her bright orange wheel chair, but almost everyone had drawn her with a huge smile. As a parent to a "sick kid" I always worry about how her condition will affect those around her. Batten Disease is complicated and we have really struggled with how much information to share with her class. I know that eventually there will come a time when we will have to withdraw for the sake of the other kids but for now, I feel good about our decision to have Tatyanna attend a regular grade 1 class. At this moment, she is an important part of their class, and although she has some obvious issues, they choose to celebrate what is good.

Thursday, October 15, 2009

snow day

Dear Mother Nature*,

I know that you are getting up there in years and as such are entitled to some forgetfulness but there seems to be significant confusion this year regarding the order of the seasons. Until now, the norm has always been winter, spring, summer, fall and not winter, springish, winter. You seem to have entirely forgotten about summer and fall. 2 weeks ago, we had a brief reprieve where the temperatures soared to 30 September. What was that anyways? A hot flash? At any rate, it did not help the country prepare for the early onslaught of winter. The leaves are still green on the trees and my yard is covered in snow. This just isn't right. I can understand some mix up with maybe one season, once in a while, as this isn't the first time that we have missed out on summer. But, 2 seasons??! Despite the fact that it is generally a precursor to the dreaded Manitoba deep freeze, I love fall. The crispness in the air, the colourful leaves, the geese flying overhead, it's an amazing time of year. One that is meant to be savoured with a mug full of chai and a fuzzy sweater and not an entrance full of wet soggy mittens and winter boots. I can handle missing out on summer again but could we please, please have fall back?

On the upside, to balance out the millions of disgruntled prairie dwelling Canadians, my kids are thrilled.


*Just to clarify, that was totally tongue in cheek and I have not converted to paganism nor do really I believe in mother nature. Mom, you don't need to schedule an intervention with the pastor or somesuch. :)


Friday, October 09, 2009

Because middle of the night ramblings are often a cause for much regret, I have decided to stick to a safe subject. Shoes. Here's my top 3, favourite pairs:


This is me in a shoe. I've had this pair of docs since the days when I was allowed to wear fishnets, ratty jeans and multicoloured hair. My kids have since outlawed such attire. Despite what the Ripcordz try to tell you, kids don't' necessarily like it when "their momma wears army boots". These boots have not had an easy life. Years of abuse have left them a little...ok, alot battered. The leather is faded and they are full of holes but to simply throw them in the garbage to be covered in the remnants of last night's dinner would be so very wrong. And so, they sit in my closet. Allowed the dignity of semi-retirement. Once in a while, I still wear them and the moment I put them on, the planets realign and for a minute the world is least until i step in a snowdrift and then water leaks through the hole and I'm stuck with cold, soggy feet for the next few hours.


I saw these in a Chinese market and couldn't resist. I know the tag says Converse and they probably aren't but I love them anyways. They are a shout out to my punk rock past. A subtle way of remembering some truly fun times. Although I was on my game and bartered them down to a completely respectable price, the sales girl probably could have had me within the first couple of tries. There was no way I was leaving without those shoes.


Realizing the skull covered Chuck Taylor wannabes aren't necessarily suitable attire for meetings with neurologists and teachers etc. I recently went shopping for a new pair of shoes. The moment I saw these I knew I had to have them. ( if you want to have them too!) For some reason, they remind me of China, and that makes me happy. They are also the comfiest shoes that I have ever put my feet into. My daughter Skylar, however, does not share in my love for the shiny, new shoes and has told me that I should never, ever wear them when I come to her school. In fact, at the shoe store when the sales person approached and asked if we needed any help. My girl quickly responded with a pointed look and a "NO! We're just looking!!!" Sorry, Skylar you just sealed your fate right then. For the last 2 weeks those particular shoes have been on my feet every single time I've had to walk into the school. Because I love her like that. Now I just need to figure out how to get the brown alligator pair and the paisley pair.

*Yes, I realize how pathetic it is that I have pictures of my shoes, ready to use, already on my computer.