Family, Life, Race Update
We are all back to school doing full-day classes. Rachel has settled into 5th Grade, Julie is loving 2nd grade, London can’t wait to go to Kindergarten everyday and Boston is enjoying going to full-day Montessori. Boston has been acting up A LOT so I am trying to find ways to give him 1:1 time and so far I’ve been taking him on morning bike rides before school. This morning we went to the beach because we had a few minutes to spare and looked for shells.
On my walk home from Julie and London’s bus stop I was lamenting to myself that getting all 4 kids ready for full-day school in the morning (NOW) is easier than it was when it was only Rachel who was going to school. I can only imagine what the neighbors thought while Rachel screamed and cried and yelled and hit us while we got her dressed in the morning and that is pale in comparison to the intense sensory agony she was in while we brushed her hair, her teeth or put socks on her. I am so grateful for medication and how it has given us intermittent good times with her at home and substantial amounts of good time at school, and with Granny or one on one with someone.
Tomorrow we are running our annual jewelry table for Endless Summer (www.endlesssummerhull.com) with a twist because this year we are seeking runners, walkers, volunteers and business sponsors as we are raising money for Juvenile Batten Disease. The race planning is going very well and we are getting a lot of buzz around our town through all 3 schools, loads of residents and our customers. I am very excited about this race, c’mon October 23rd!
We have put Rachel’s name in the hat for the trial and are waiting to hear as to when she can start I have filled out all of the paperwork, caught her up on vaccinations and have gotten permission from Dr Sims (Rachel’s Neuro at Mass General) to be her local doctor.
Things we have planned? Outside of the upcoming road race I have two pretty giant things in store for my kids. A day or so after Christmas we are driving down to florida and renting a house with a pool and will spend our Winter break in the warmth. :)
Next summer? A few days after school lets out I am taking a complete cross country road trip with my cherubs going from Boston to California and back. We are also planning to drive north for a few days and spend time with James and his family (James is Rachel’s biological father). I know people have asked me why I would bother doing that as James has been out of her life (by his choice) for many years but really this isn’t about me or about him. This is about the kids. I think it will be great for my 4 children to meet their twin sisters. Technically they are only Rachel’s half sisters but my motto has always been “You can’t have enough people love your kid.” (Or in my case, kids). I have a lot of planning to do for that but the details are all on hold until after this road race.
London especially wants to dip his toes in the Pacific ocean, his life’s dream is to live in California and drive a minivan. I figure a good test drive through Cali could help him to see if this is something he wants to aspire to do or not. Yeah, he is barely 6 but he talks about it everyday.
Life is too short to waste it waiting for things to happen so you can move forward. Move forward, move things into place. Make things happen. Your life could be over tomorrow. Live without a lot of regrets. Live enthusiastically. IF we only know, truly, how many people in this world, in America, in your own town, maybe even on your street, who are fighting for their lives… Just thinking about it is very humbling to me.
- With love, Kat.
Read MoreSeptember 2011
After the recent heat wave affecting New England we (me and the kids) have decided to postpone our summer road trip until September. Its a good excuse to blow off a little school but more importantly the weather will be more temperate and I won’t have to deal with 110 degrees while strolling through Hays, KS or Terre Haute, IN. We stayed there last year in our travels and both were little slices of hell on earth. Neither my kiddos nor their Mom do very well in such high heat.
We’ll be driving out to Colorado and hopefully staying at the Garden of the Gods Campground (they don’t close until September 30th) for about a week and hanging out with incredible friends (they can only be found in one place apparently lol). We were considering staying a while but the Colorado Springs School for the Blind isn’t sure if they’ll be able to provide programming for Rachel.
We’ve generally traveled route 70 and took route 80 home once but we are open to suggestions. Any good road stop ideas? I really want to go to Niagra Falls this time around…. but I hate the drive through upstate New York.
Planning to go to the Flying W for dinner, Santas Workshop for some fun, Geocaching, then float down the Arkansas River and we (me) are looking to do some stock friendly trails with the Jeep while we are out there. Every summer seems to be a little more difficult than the last so we have no choice but to take life by the horns……………..
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. 
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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