So excited!
One of my BFFs from Colorado is coming for a visit this weekend. It will be SO GOOD to get out and do some Boston Touristy stuff. We’re thinking of the Duck Boats, Blue Man Group (etc). Sunday morning is breakfast and Pedicure time.
Yay for JJ! Now if only she could stuff Melissa in her suit case.
Pictures to follow!!!!!!!!!!
Read MoreDecember Trip – Foul Ball
Let’s see. Me and the kids planned a Trip of a Lifetime from Boston to Colorado, stopping to see family in Kansas City. The goal of the trip was to see the Flying W Christmas Round-up (Bucket List item).
It didn’t quite happen that way.
My minivan broke down in PA (water pump died and overheating commenced).
Once the van was fixed we hit lots of snow.
We ended up getting to Kansas City and stayed a few days but saw more weather heading through Colorado and Kansas and I decided it was safer to drive home.
I will do this trip again next year (earlier in the Flying W Christmas Season) and we will GET THERE!!!!
Read MoreHeaded Out
We’re going back to Colorado via Kansas City to see the Flying W Christmas Round-Up! Leaving in a few short hours (need a little bit of sleep first) and will hopefully drive as far as Ohio tomorrow and stay in a TBD hotel.
Driving to Kansas City and staying 2 nights then headed to Colorado on Thursday.
Wish us luck that the weather holds out. 
Rachel Update
Today’s picture is the kids with Santa, taken at the Hull MA Carousel Shop. I’ve put this picture in our yearly business Christmas card. :)Trip of a Lifetime Version 1.1
I’d say version 2.0 (since we took a trip in August) but I feel more comfortable adding a sub version to this trip since its still 2010 (and version 2.0 is planned for January 2011).
I’m taking the kids back to Colorado next month for a week and can’t wait. We’re going to have an early Turkey Day with the best of friends and if we’re lucky we’ll get to see some snow. Also hoping to find somewhere that has snow tubing already going by then but won’t mention it to the kids until I get some good news.
And we’re also hoping that the Flying W will have already started up their Christmas Show by then. Rachel loves their music.
Read MoreDay 10 – Royal Gorge
The Drive: Today I drove the kids and I from the northern part of Colorado Springs to Cañon City (and back). We had free tickets through our Make-A-Wish trip and Give Kids the World and I thought it would be a great time for the kids. Yet another Bucket List item got crossed off today!
The Royal Gorge is the proud home of America’s highest suspension bridge and is sure to scare the crap out of you if you, like me, are afraid of falling from heights. We didn’t make it all the way across the bridge because the “swaying” made me really uncomfortable and I didn’t want to scare the kids. I really enjoyed the incline railway (click here to see it) and I took a bunch of pictures of the kids at the bottom, next to the beautiful Arkansas river. There were a lot of stairs all over this place and it became quite difficult to manage for Rachel. I carried her (all 110 pounds) down 2.5 flights of extremely steep stairs to the bottom of the gorge, piggyback style. Worth. Every. Last. Step.
Total Miles: About 100
And tonight I went out to coffee with some great friends. I’m waiting on my girls to email me some of their pictures but I did have one I felt was good enough to post. Here is JJ and Mel (Marie and Susan came too!)!!!!!
Saturday – Random Photo
We’re back from our trip and the kids are vegging out in front of the TV and having a relaxing morning. I’m going through our trip pictures and organizing the entirety of my pictures. I just sent out an email to everyone I could think of, looking for pictures of my kids when they were really little. I’ve lost more pictures than I care to think about and am hoping to fill the void somewhat. I figured this would be a good time to include a picture of Julie that I took back in 2005, soon after our move to Colorado.
It is hard to look back at that time, a time when we had everything. We still have so much and are more lucky in our lives than most people will ever be. But still, living through Rachel’s life with Batten Disease is deafening at times and quite fun at others. There is life despite what she is going through, but it will never ever be the same. The joy will never (for me) be pure again. Despite my realism in this paragraph, it is my personal mission in life to hide my pain from my children so that they can enjoy their lives as much as possible. When the time comes that they realize the gravity of Rachel’s diagnosis, I will open up. But for now, those kids will enjoy their childhoods, even if it they don’t want to. LOL
Read MoreThe Bucket List
So if you follow Rachel’s facebook page or know me “in real life” you’ll probably know that the idea of a Bucket List has been the topic of several conversations between me and the kiddos. They don’t understand that this has ANYTHING to do with death so please don’t comment or email me worried that I have a doom and gloom attitude that is negatively affecting them. My positivity is borderline disgusting. LOL
I’ve put “The Bucket List” on the top right of the blog and plan to add many, many more things to the list as the weeks go by. The plan is to take a very long (nearly) cross country trip stretching from Boston up north to Maine and all the way West to Kansas City then Colorado and back. We have free access to several amusement parks through September and I’d like to take advantage of this gift from “Give Kids the World” (the place we stayed in Florida on our Make A Wish trip).
I’m also setting up a FLICKR account to link our pictures from all of these successful missions to show the world that life is too short to wait on the important things in life. Life is too short, people. It’s a fact. Batten Disease is such a shit disease, I refuse to let it steal my Rachel until she has had the chance to use up her body and slides into home base covered in fattening food and exhausted from life.
The more afternoons I can get my children sticky with ice cream this summer, the better! I’ll leave you with a picture from Summer 2009 (the extra 9 year old boy in the picture is my nephew Ryan).
You keep that thumb in the up position, baby. Hold on tight because I’m going to drag you all over this country!!!
For the unaware, “The Bucket List” was a movie that came out in 2007. < link to IMDB>
Read MoreThursday
Another trash day has come and gone.
This was a pretty uneventful week, the kiddos are all healthy (knock on wood) and Rachel went in to school for some OT and Speech therapy which she enjoyed. Next week she is going back to school on a modified schedule that fits in with London and his preschool hours. She hasn’t been going to school since the week of Disney (Make A Wish) trip.
Julie is sitting next to me playing with her new wooden stamp set that I amazoned her as a special treat. The weather is perfect for October and Rachel, London and Boston are playing on our porch, actually on the other side of the window I am sitting next to. Its very nice to see them playing. Rachel is doing some pretend play in their play structure, pretending it is a ship that she is sailing to California with her GPS. Its nice to see her imagination at play. She started a stimulant medication this morning and I’m hoping that we will see some long-term benefit and behavioral improvement. Her vision continues to get worse, which we know to expect, but it still sucks to see. The blind have their own world that I have never been exposed to but I’ve been thrown into the deep end of the pool and am trying to learn quickly.
London and Boston are back to daycare 2 days a week and are staying until 5 so I can get some work done (which is quite busy as of late). Both boys are in preschool (London is where Julie went and Boston is in the little green school across the street from our house) and they are happy. London is going to be Woody and Boston is going to be Buzz Light year. Julie wants to be a “Girl Frankenstein” and Rachel wants to be a “Mummy.” WTH am I going to find a Girl Frankenstein??? The kids are convinced that I *NEED* to be “Jessie” from Toy Story. Looking forward to Halloween (which is also my last day as soccer coach for the season).
A very nice person is taking my girls out tonight for a couple of hours and I am sitting next to three hampers full of clean laundry with no chance I can get it folded before she comes. I guess, on the bright side, is that the laundry is clean.
Most people say “Calgon take me away” but I’d rather think about this:
I’m out in Colorado
The experience of seeing my old friends but picking up where we left off has been amazing. Thank you for being in my life, even though we are so far apart. I treasure all of you and the fact that you “get me.”
I’ll post some pictures as y’all post them on your blogs / etc.
xoxoxoxoxoxoxoxoxoxo
I really wish my family was here with me to visit with you guys.
Read More
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.
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