A year
It has been a year since Rachel was diagnosed with Juvenile Batten Disease. It has been a tough year for me and for John, but about the same as the year before we were diagnosed for Rachel and the kids. She has definitely lost most of her vision in the last 2 years and has been adjusting to that. Its interesting that her brain is slowing down, her gait is affected, she is nearing complete blindness but she never complains and rarely mentions difficulties.
Although I am sad and pretty much want to drink myself into absolute oblivion, I have a stronger resolve to make sure that our road trip is LITERALLY the trip of her lifetime. I want to have extra patience, be extra excited, plan extra harder and do everything twice as good. I don’t want to waste too much time being depressed about her disease because that is futile.
With any luck, I will live through this.
With any luck, I will have three children grow up and be healthy / generally happy adults. I need to make sure their memories are extra good and that Batten Disease isn’t what they think of first when they look back.
With all of that said, here is a map of our approximate travel route. The purple line on the bottom is how we are getting to KC / CO… and the line at the top is the route we are taking to get home. Click on the map and you’ll see a bigger version.
If you have any suggestions with good stopping places or “MUST SEE” places, please let me know. This trips means the world to me.
Please repost this on your blog or facebook page. I’d love more input!!
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.
You are a fabulous mom and you do everytihing you can to make the days special. I am positive that the other kids will not be thinking of Batten Disease when they look back. Love you! Can’t wait to see you and the kids!
Hey wifey,
Okay can swing up to Scottsbluff, NB? Also, what dates are you doing your return trip… I gotta see where I am going to be. Would so love to meet you babe!
:muh
Also, I put out some feelers to see if anyone i know, knows of where you might milk a cow along your route
You know being the midwest and all 
St Louis Arch–you can ride to the top and look out through small windows. kinda cool…
You should definately check out Kaleidoscope.Its an arts and craft place. completely free. Kids get to take what they make home. I’m a teen and I still loved it. Sponsored by Hallmark.
HEY! if you are coming in on 76, you will drive right by my house. just let me know which day you will be driving there so that i can plan.
We’ll be leaving through 76 but coming in on 24 to the springs.
Sounds like the kids will love it. How far from your house?
What kind of detour time is that? I know its right off the highway…
Had a fabulous day with Julie which we both enjoyed. Lunch at Feng Shui was excellent & I dont think she will need much dinner. She is very excited for the road trip & wanted coloring pens & a pencil case for the journey so we got them for her. Rachels day with Granny tomorrow & Londons on friday. Hugs to you. Mum XX
Milking is all set. Working on the jet skiing and also pontooning while you’re here…
We can’t wait to see you in a week or so.
Strawberry jam awaits as do a dozen home grown cantelope for the kiddos to pick & eat!