Cannot
I cannot believe that I didn’t go to Julie’s “Book fair” slot today. The poor kid was there and didn’t have her Mommy show up and didn’t have any money with her. I’m sure I got the notice (twice, once for each girl) but I didn’t flip over the letter to get the book fair class times. I feel like the worst mother ever imaging my little girl alone and penniless. *cry*
I cannot believe that Rachel is dying, slowly losing her vision, her mind and her abilities.
I cannot believe that my Boston is going to be going to his very own preschool program. Nearly 3 years old!
I cannot believe that my London is about to turn 4, is totally potty trained and goes to preschool. Time flies!
I cannot believe that we are going to Disney World in a matter of days.
I cannot believe that I actually drive a minivan and have done so for 5 years.
Sometimes I cannot believe that this is my life, the good and the bad. Yesterday I was a teenager driving an ’86 For Mustang and today I am a grown-up with some pretty giant responsibilities on my shoulders. How the hell did that happen?
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
and i cannot imagine the kind of strength it takes to still see the good as well as the bad. keep it up, kat, we’re pulling for you, all of you.
(Mary would be so jealous of the Mustang. The closest I came was an old pale blue Taurus that my Aunt and Uncle painted flames on the side of. Seriously. My parents wouldn’t let me park it in the driveway.)
xoxo
Randomly thinking about you today.
Kat,
I know you said you don’t believe in prayer or a higher power, but I do. I also believe in the power of science. I will pray for some divine inspiration to those who research Juvenile Batten Disease, for both a way to stop the progression of the disease and a way to reverse the effects.
You are an amazingly strong person. The fact you haven’t become a complete basketcase with all this on your plate is astounding. Try to stay in that “make the best of things” state of mind and out of the despair, that is a bad place and doesn’t help anything. Enjoy your trip and enjoy all of your children during this precious time together. I know it is hard, and you are doing such a good job of it. I hope it brings you comfort that someone out in cyberspace thinks you are doing an awesome job! {{{{{{von’s}}}}}}
JulieC
I can relate on so many levels, from the Batten Disease slowly stealing my little girl to cruising in my 86 Mustang (with the back end covered in SK8 and punk rock stickers). How does one even go from there to here??
Hang in there! I don’t know you personally but think that you are an amazing, strong person and you can get throught this.
Last night reminded me of my great grandmother. If I took her to her regular grocery store she would run like crazy. We figured it was one of the few places she didn’t get moved around. She couldn’t see so well but she knew her grocery store!
Last night Rachel too refused help from time to time. She zoomed around her school.
The memory just brings me to tears. I miss my great grandmother. She was as flawed as any of us. I could talk with her….she gave me a longer perspective. I enjoyed her company.
A few years later she passed. I know it will be sooner than I want where Rachel too will be gone and I will miss her company too.
Enjoy every minute at Disney World. Hugs Mum XX
I cannot believe it either. I long for the days when I lived in my parents basement with little to no responisiblity. Growing up bites and its especially hard when you have everythiong on your plate that you do. (((HUGS))) Love you!