Things have been pretty crazy here as of late and so I'll do a really quick update...in point form

- Since so many have asked - Last weekend we decided to go ahead and get the girls the N1H1 vaccine. I was really on the fence about it until Tatyanna came down with a cold the week before. It is now becoming more apparent the extent to which her whole body is affected by the Battens and I have no doubts the we made the right choice. I also went ahead and got the shot. I have asthma, which is generally well controlled and depending on the season, symptom free but I know how quickly it can get bad. As the primary care giver to Tatyanna, our family can not afford for me to get seriously ill. I am aware of the argument against it and it was not a decision that was made lightly. Unfortunately my family must live in present and the vague threat of future complications did no seem like a good argument against the vaccine.....for us. I do have to say, if those are the side effects from the needle.....I really, really do not want to get that flu! Between the muscle aches and joint pain and hot and cold flashes, I was a miserable the first night. By the next morning, though, other than some residual arm pain, all was right again in my world. Tatyanna, who we were most concerned about, had no side effects whatsoever!

-Speaking of Tatyanna, she is doing awesome lately! She has been so happy and "talkative" over the last few weeks that it has given all our spirits a much needed "lift". Unfortunately she has also been happy and talkative at 3 in the morning. Coffee is a very good thing.

-We did go ahead and meet with the surgeon regarding a future g-tube placement for Tatyanna. It is becoming increasingly difficult to get enough calories in over the course of the day and although she is not losing weight, it has been almost 3 years since she last gained weight. As she continues to grow, she falls farther and farther behind on the height/weight percentiles.

-The older kids did really well at their last parent teacher interviews. They have had so much to deal with over the course of their lives and it amazes me at how resilient kids can be!

-Speaking of older kids (rockin the segues today folks), it's amazing how quickly they can get out the door in the morning when you threaten to wave the school bus on wearing nothing but a towel. I really should have tried that one sooner. Fortunately for everyone, the kids are smart enough to realize that their mother never bluffs.

- DITL is up over on lj, if you care to take a look.

-We actually now have high speed, "for real" internet....as opposed to the other kind which masquerades as high speed, lures you into a 3 year contract and then never actually delivers anything faster than dial up. Dear Xplornet, I hate you. Our email address will be changing right away, so if you need the new one, just let me know.

complete randomness

I had always found Walmart's "roll back the prices" signs amusing as often the savings would amount to a few cents, but this one really takes the cake. The orange sticker says a savings of $0.50/kg and yet both the other prices remain the same. Hmmm.... something's fishy here.

Finally a tree that the goth crowd can appreciate! Part of me wants to take it home, cover it in black and white decorations and watch The Nightmare Before Christmas.

The disclaimer, "No fairy tale creatures were harmed in the making of these shoes" does not apply here.

Since adding texture to photos seems to be the fun and trendy thing to do, I thought I'd like to play too. I think I could use some practise, but it was fun trying.

This is, to date, one of my favourite photos. Tatyanna was 3 and Battens had not yet begun its relentless attack. We were at my mom and dads' house and she was having the best time ever running around the backyard and playing in the inflatable kiddie pool. Coming from a brand new housing development in a bigger city (complete with postage stamp yard), she would call their yard 'the park' and was in her glory with all the space to play. I snapped this shot during a rare moment that she was actually sitting quietly. For a kid who was nonstop motion and loved to ham it up for the camera, this picture was extremely out of character. The intensity in her eyes and almost uncertain expression on her face seemed so out of place on that hot July afternoon. It's almost as if she had some knowledge that we were not yet aware of. Within moments of the shutter clicking, she was off and running through the yard and splashing in the pool with her little sister.

For comparison, here's the straight out of the camera original. It's not the best shot, technically, but I like the composition and the way it captures the emotion of that moment so it's fun to play around with.

.

I have always considered myself an open minded individual. During my years as a psychology student in university we spent hours discussing the role of gender stereotyping and its effect on children. In our "qualified"opinion, raising your child in a gender neutral environment and encouraging growth and exploration in all areas was the key to optimal development. We thought we were pretty clever, in our 19ish years of wisdom. Then, I actually had kids of my own and realized that it was all a crock of.....something. By the age of 2 my boy (despite the dolls etc that were available to him) was obsessed with monster trucks and earth moving equipment and Skylar seemed to have a innate homing devise for the nearest mall and was forever asking for more "pretties" for her hair. Tatyanna was a bit of a wild card (much like her mother) and was only obsessed with horses. Pink horses, brown horses, horses riding in monster trucks. She was only interested if it had a mane and tail....with or without "pretties". We always sort of wondered how Lexi would turn out, as she did seem to have a fairly broad range of interests. That is until she and I had the following conversation this morning:

(thus proving in my opinion that psychology books are only good in theory and in truth, girls will be girls and boys will be boys)

Lexi: What's your favourite colour mommy?
Me: Red
Lexi: Oh.
Me: What's your favourite colour?
Lexi: It's purple....I used to like blue....but not anymore. And you can't like red anymore either. You have to pick a different colour.
Me: But I like red. Red is most definitely my favourite colour.
Lexi: It can't be. You can't pick red. Blue and red go together. Keirnan can pick red because he's a boy and they are 'boy' colours.......how about pink?
Me (because I like to be difficult): Nope, I like red......red it is....in fact, I love red.
Lexi: Well, you can't pick red.

****the stare down begins****

Lexi: fine...is it sparkly?
Me:??
Lexi: I guess you can pick red.....but only if it's a sparkly red.
Me: Uh.....Ok....sparkly red it is.

So, just in case you were ever wondering, my favourite colour is red......but only if it has sparkles.

enough to spare

"I don't want peanut butter on my toast this morning.....I think I'll have 'personality' instead today."

There are no words. Today I was present as friends said good bye to their 7 year old son. On the way home from the funeral I found out that Batten Disease had claimed yet another angel. I would love to be able to take the scattered thoughts that are swirling around my head, write them down and have them make sense but I can't. Because it doesn't make sense, no matter how hard I try. It's not supposed to be this way. I lay here, the darkness of the night pressing in around me, Tatyanna nestled into my side and it all hurts so very bad. The grief I feel for these families becomes intertwined with my own sense of loss and the pain is overwhelming. Parents are not supposed to watch as their kids are laid to rest, it's not the natural order of things. It's just not right.

And so, for tonight, I hold my sweet girl close, grateful that I have another night to lay kisses on her soft hair, a prayer on my lips that I can please have tomorrow. It's all I ask for. Just one more day. But as time moves on it becomes more and more apparent that she is slowly becoming more heaven's child than my own and I know that one day, far too soon, I too will have to say good bye.

Fence sitting

Even more than Jon vs Kate or Jennifer vs Angelina, the H1N1 vaccine has turned mild mannered people into angry, volatile masses. Damned if you do, damned if you don't. It doesn't seem to matter which stance you take, several "well informed" individuals will jump down your throat and inform you, in their expert opinion, as to why you have just made an incorrect decision. Public health is swamped and will not answer their phone or return calls. It's a mess, really. Despite the fact that the first priority, in Manitoba, goes to those with underlying health conditions, the setup for mass vaccination makes it almost impossible for these people to get vaccinated whether they want it or not.

Truthfully, I'm still on the fence, and it's not a comfy place to be.....I'm pretty sure it's one of those black painted, pokey, wrought iron numbers. Poised precariously, unsure of which side of the fence to fall, I have spent hours researching and deliberating. My younger kids have never been vaccinated for anything. While I'm not against childhood immunization, we decided to follow a delayed vaccination schedule. It was a decision that seemed right for our family. Then life (read:Batten disease) got in the way and we never did have the younger two vaccinated. Now, I'm seriously unsure of what to do. While I have some reservations regarding the H1N1 vaccine, I have no doubt that if Tatyanna were to contract the flu, at the very least it would cause a significant regression in her condition. On Friday I thought I had my mind made up. I headed over to the husband's place of employment which was hosting a vaccine clinic at 1pm. Even before noon the line was out the door and down the street. When Trent inquired as to whether he could sneak Tatyanna in sooner (yah, i know...but you can't blame us for trying...right?)) he was given a resounding "No" from the public health nurses. Truthfully, I can understand that decision, I really can. The part that begins to irritate me is the fact that the same nurses, who demanded that my 6 year old child with a degenerative neurological condition and inability to maintain her body temperature wait for over an hour in the cold, were perfectly willing to vaccinate my husband early. My husband who does not, in any way, fit into the top priority category but simply happens to work in the business holding the flu shot clinic. Hmmm, can anyone see the logic here as it seems to have eluded me. And so, I am back on the fence again.

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.

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 bad.....like 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?

Lexi: ......no......


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.

Happy Bday to a pretty awesome person!

*Belated birthday post

Skylar,


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!


Love,


Mom

"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.

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.

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 C.....in 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. :)

Sincerely,

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 good.....at 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. (http://www.happylookslike.com/ 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.