Tag: road trip

We are currently in Colorado Springs, staying just one more night before we head west. Colorado has been riddled with multiple forest fires because of the extreme heat and lack of rain, dry lightning and a suspected arsonist. We were staying at the beautiful Garden of the Gods Campground but because of the high heat and the eventual smoke and nearby evacuations I moved the kids and I to a hotel in the eastern part of Colorado Springs (near Peterson Air Force Base).

Today we are having lunch with some of my favorite people then we’ll come back here and do some swimming and tonight we are going to a Heather’s house of pets (haha Heather, I love you) and a simple, PASTA dinner. Pasta is one thing my kids really miss on the road.

Tomorrow morning, before the roosters come out to crow, we are driving up through Denver, through Wyoming and staying the night in Utah. After one night in Utah we are driving to Eureka California and spending two nights there. We can’t wait to get to California, visit the pacific ocean and see / feel the Redwood Forest. That will effectively cross 3 more items off of our bucket list…

Today we met up with Heather, Nick and Sky (her boys) at the Omlette Parlour. Great food, even better company!

Gotta love a place that serves up good, vegetarian omlettes! Check it out: http://www.co-spgs-omeletteparlor.com/

Picture: Heather and her son Nick

I’ve been running these kids hard, trying to see a ton of different places. Last night London had a late sandwich and passed out after about 3 bites. He is totally adorable, isn’t he?

Only a few more days in Colorado (which we have packed with plans) then we head out west…. <3

Love these kids, they love the water and swimming so much! <3

Sadly, her son passed away last year but that doesn’t stop us Batten Families from sticking together. Thank you to Cheri who treated us to lunch this week! <3

Team Rachel is safely in Colorado Springs Colorado and had the pleasure of visiting Garden of the Gods yesterday! Today we’ve been hiding out because of the record temperatures (Rachel and the clan don’t do well in the heat).

Yesterday we left Hull Massachusetts and drove through Connecticut, New York, New Jersey, Pennsylvania, West virginia and into Ohio. This morning we’ll be stopping by the Batten Disease Support & Research Association to say hello and meet the staff then will get back on the road and head to Kansas City where we’ll stay in another hotel.

While I was bringing the kids and a load of our stuff into the hotel I met two truckers that are staying across the hall, one of them was born and raised in Brockton, Massachusetts. Small world, right?

Today we’ll drive through Ohio, Indiana, Illinois and Missouri. <3

Picture: Kansas City at night

We have already raised over $400 towards our $7206 goal to fund research for Batten Disease. The kids are excited, Rachel keeps on trying to convince me that flying would be so much easier (no shit, love) but that wouldn’t draw attention to her, to the disease, to the lack of treatments. The minivan we just bought is being lettered tomorrow with Team Rachel’s info all over it to draw attention to us. I personally hate attention, the attention of this disease, the admiration of doing a good job with Rachel and fundraising (etc), but I’ll grin and bear it every last step of the way for this kid, for all of these kids. Can’t wait to hit the road with our business cards, bracelets, pamphlets and our brightly lettered van to get more money into the hands of the people who are tirelessly researching to cure Batten Disease and several other genetic diseases just like it. If we can figure out one, it will give us answers to others. I won’t quit this fight until the day my heart stops beating. Please donate if you can and spread the word if you are able.

Love,

Kat (Rachel’s Mom)

Picture: Rachel and Julie at the end of walking in Hull’s Memorial Day Parade.

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.

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……………..