love

Definition of sisterly love - taking the time to cover your sister's eyes, because she is no longer able, before your own during the scary part of the movie- Disney's new frog princess. I wish I had my camera for that moment, it was priceless. (I may or may not have had to leave the room because I got all teary eyed.)

A key difference.....

The difference between 11 & 4yr old daughters - the 4 year old watches you get ready and says "wow, mommy, you look pretty!", while the 11 yr old comes into your room, wearing your clothes and says "this looks a lot better on me.....can I have it...."

Due to the sheer craziness of the last few weeks, I have been having a hard time staying caught up on both Tatyanna's blog and my own. Please feel free to check in on things here:

www.tatyannashope.blogspot.com

As soon as we adjust to this new normal it will return to business as usual over here.....I hope!

Two years ago today we received Tatyanna's diagnosis of LINCL. In the time since, I have learned to become a researcher and advocate, I have become stronger than I ever thought possible. I have learned that it's ok to live in the moment, to let go of what or who is not important and to celebrate the small things. I've seen that there is light and hope and beauty in the darkest places and that sometimes the miracle you pray for is not the miracle that you receive but that they are all around you .....you just have to look -sometimes really really hard. :)

As put, rather insightfully, by one of the other Batten parents, "our children aren't dying from Batten Disease, they are living with it." I believe that if we focus on the negative then the disease wins and our losses will be far greater than the obvious. That isn't to say that there aren't bad days, that there aren't times when the pain threatens to overwhelm and the very act of getting out of bed is a supreme effort of will. I'm human, after all, there are days when my strength falters and my spirit is tired. But, I have to remember, this isn't about me....it's about a little girl with more courage and heart than I have ever seen in another human. It's about a little girl who once radiated enough energy that she almost seemed to sparkle. It's about my sweet daughter who at the end of being poked and prodded for the millionth time still had it in her to smile and want to give out hugs to anyone around. Because of her, at this moment, I choose to celebrate what is good. Even when things look their bleakest, there is still love and laughter and life.

One of the first Batten parents that I "met" in the days following Tatyanna's diagnosis was Miranda. Over the months that followed we talked on the phone, exchanged emails and supported each other through what can only be called a parent's worst nightmare. We evolved from recruits, drafted by force but eager to fight, into seasoned veterans with more knowledge about "trench warfare" than either of us could have anticipated. Optimism gave way to realism and although hope prevails, neither of us is naive any longer. We know the costs, we've watched the ranks swell and mourned the losses of so many courageous kids. Kids who had to fight so hard and ultimately lost their battle. On January 17th, Miranda and her husband Neil lost their beloved Hailey to Batten Disease. She was only 7.

Although their hearts are breaking the Goranflos are committed to the fight. Their son Carter also has Battens and unless a cure is found soon, he will join his big sister long before he's ever had a chance to live. The attitude of many Batten parents is very much one of "We may lose this battle, but we will NOT lose the war" Our kids can't die in vain. A cure must be found. Please, this Valentine's consider helping in the fight. Miranda and Neil have organized a fundraising campaign. It's simple, doesn't require a huge commitment and has the potential to be very effective. For the price of a box of chocolates this Valentine's Day, you could make a difference. You could be part of a miracle. Donate $10 (or whatever) and then tell 4 people to do the same. Ask that they tell four more. And on it goes! See, I told you it was simple! For more information, please go to www.haileyandcartersdream.com. Donations can be made through the paypal link on the site.

Treading rough water
Tumultuous current threatens

Sun still warms my face

***

Ok, I know I'm not fooling anyone. I'm really more of a limerick/nursery rhyme kind of girl as of late but you get the idea. I also realize that there is nothing in the picture that even remotely hints of water or currents that aren't frozen solid. This is the prairies after all, sunflare and snow was the best I could come up with.

***

And to those that periodically find my blog under the google search query of "what is Jean Batten's favorite color"....I have no idea, but I'm guessing sparkley red. :)

The Mona Lexi

Since Tatyanna has made the executive decision that sleep is for the weak and as such we can all go without thus rendering me incapable of forumlating complex sentences that aren't horribly run-on, I am going to put up some links, call it a blog post and grind myself some more dave's homeroast because it is awesome.

***

If you feel like being amazed (i highly recommend this one!):

http://www.youtube.com/watch_popup?v=vOhf3OvRXKg

If you feel like being amused:

http://www.guidespot.com/guides/awkward_family_photos

Or, if you are anything like my daughter and could spend hours watching videos of strange cats:

http://en.video.canoe.tv/video/comedy/comedy/1906868833/creepiest-cat-ever/60379727001

lexi quote of the day:

"I'm getting bigger, pretty soon I'll have to get married....but I can't marry daddy......cuz YOU already married him first!" *insert glare*

Inspiration Quilt

For the last several weeks I have been making my plea to all those on my facebook but for some reason am only now thinking to mention it on here. On January 22 a movie entitled "Extraordinary Measures" will hit the theaters. Starring Harrison Ford and Brendon Fraser, it is a story of a father's fight to save his 2 children from Pompei Disease. His fight so closely mirrors our own struggle in the Batten community and we are all hoping that it will help create awareness of the plight of the many children who suffer from rare conditions. To help give back to the community, Extraordinary Measures has a contest up on their website. The winner will receive a donation of $10,000 to put towards the charity of their choice. My plea to you all is to please take a moment to go to the website: http://extraordinarymeasuresthemovie.com/ and click on the link "Inspiration Quilt" On page two of the quilt is a video entitled "Noah's Hope:Fix You", you can also find it by typing Noah's Hope into the search feature. Noah and his little sister Laine, like Tatyanna, suffer from late infantile Batten Disease. Please take a moment to watch the video and then vote. Then, you can do the same thing tomorrow and the day after. In fact, you can vote every day! The 2 seconds that it takes may be all that's needed to make a difference. Noah's Hope Foundation will match the dollar amount if the video wins and all proceeds go directly to the fight against Batten Disease. Our amazing kids fight so hard but we need your help. Please.

passive-agressive ranting

Dear ____________

Normally I'm a fairly easy going, live and let live kind of girl. I don't usually get upset over small things and, even when bothered, I don't generally say anything. I prefer to give things a day or two to see if it really matters or not. Apparently, this time, it does. The other day I was offended. Disturbed enough that I lost sleep over the matter.....for 2 nights. I'm not sure if the stress of the holiday season has made me overly sensitive or if its because I expected better from you all. You are educated, intelligent people. I am disappointed.

Addressing your kids affectionately with the monikers of Short-bus and Special ed is no more appropriate than giving them nicknames containing racial slurs. Using that kind of language is not funny, it's not cute. It is inconsiderate and just plain ignorant. As the parent of a courageous little girl who qualifies for that particular club, I was hurt. Over the last year and half I have become very familiar with many kids with significant and varying medical needs, most would be considered card-carrying members and all have more heart, resilience and tenacity than I have ever seen in a person. These kids endure more than any person should ever have to. Using that kind of language "in fun" is demeaning to them.

I truly hope that you will reconsider the nicknames that you have chosen for your children but if not I make this request: Every time that you address one of your "normal" daughters by Special ed or Short-bus, please take a moment to give thanks. Be thankful that, thus far, you have been allowed to remain naive and sheltered. Be thankful that, in the grand scheme of things, your little girls have enjoyed relatively good health.

Your children have the only thing that many of us want for our own sweet kids, a future. Don't take that for granted.

waiting for santa......

Dear Dog,

The Christmas tree is considered holiday decor and its sole purpose is to give the house an air of festivity. It is NOT a help-yourself, all you can eat, buffet of colourful, plastic chew toys. If you value your place in this family, you will cease and desist your current behaviour immediately.

I thank you for your attention to this matter and urge that you conduct your self accordingly.

Sincerely,

The Management

***

Dear Kittens,

I realize that you are cats and as such have been indoctrinated, since birth, with the belief that the world is your oyster and you can do no wrong. Truly, I hate to be the one to bring any sort of doubt to this belief system. But, the large tree that has taken up residence in the living room was NOT put there for your amusement. The colourful baubles that adorn its branches are NOT your playthings and your jumping from branch to branch is NOT poetry in motion. Truthfully you are all at that gawky, teenage stage of kittenhood and although you may feel graceful, that cat-like precision is currently under development. I realize that your mother has told you differently, but seriously, anyone who still breastfeeds their teenage children should not be trusted. I apologize for bringing this harsh reality to light but it had to be done.

Sincerely,

The Management

Shopping that you can feel good about

Tom's Shoes - I just came across this website today and I've got to say that it's something that I'm really excited about. For every pair of shoes that you purchase, Tom's shoes will make a pair for a child in need. How cool is that??! It's win/win. Not only do you have a funky pair of shoes, or 7, but someone who really needs the protection that footwear provides, no longer has to go without. I fully intend to support this company in the new year and will let you know how it goes!

Dave's Homeroast - This is also a business that I'm excited about. In fact, I made my first order on the weekend and am eagerly awaiting its arrival in the mail! Dave is the father to a son who has the juvenile form of Batten Disease and all proceeds from every sale go towards supporting Batten Disease and research. And, if that's not a good enough sell for you, he often has a selection of organic and fair trade coffees available for purchase as well. The only problem that I had with Dave's Homeroast was making a decision between the interesting (and often completely unpronounceable) types of beans that he had at that moment. The shipping was inexpensive and less than 24 hours after I made my order, I received an email from Dave informing me that he had just roasted my beans and would be placing them in the mail the following morning. Now that's service!

Possum Sauce *Warning - unabashed mommy bias ahead* - purchasing info coming soon! No there is no possum, nor is there any sauce - which in my opinion is a very, very good thing as I don't think that those two items go particularly well together! Possum Sauce is entirely my son's creation and will consist, primarily, of t-shirts with a variety of designs bearing the Possum Sauce logo. These are probably t-shirts that you buy for your skate-board obsessed son or daughter and not your macrame and decoupage obsessed auntie. But, I could be wrong, I don't know your aunt. All profit from the sale of Keirnan's t-shirts will go towards Tatyanna's Hope and supporting Batten Disease research. I'm pretty proud of my kid for wanting to get involved and help out and think that this venture will be really good in helping him feel like he's making a difference. Skylar is also working on some ideas and I hope to be able to share that info with you soon!