We’re headed to London in 10 days and my kids have never really been on public transportation.  I took Boston on the RTD Train and Bus so we can practice getting places and timing our arrival time accurately.  I know the London Underground is going to be a whole different ballgame but I figured we better get our feet wet.

Boston agreed to ride the Bus / Train to take a yoga class with me if I agreed to take him to see IT.  Deal done!  Here are the pictures from our day trip.  We ended up having to take an Uber home because we got on the wrong bus after the movie but it was fine, a real learning experience and honestly I really enjoyed his company.  He was tech free and didn’t complain once.

Boston and I headed out. London took the picture in front of our house.

Boston waiting at the bus stop near our house.

Me and Boston, super excited for our little adventure.

Here comes the bus!

On the bus!

Waiting for the train.  It’s a new train called the A Line that goes all the way to Denver International Airport.

Here comes the train!

On the A Line

At Yoga

Leaving yoga, headed to IT the movie

We ran late for the movie and the yoga class even though I left extra time for getting to both.  I learned that you need to plan to arrive 1 hour before you need to be somewhere in order to get somewhere on time. I didn’t take more pics because we ran late to the movie and then were on a mad dash to get the bus home from the theatre.

It was a splendid day with this kid.  

Todd and I took the kids to Rainbow Lakes outside of Nederland, Colorado the weekend before Labor Day Weekend. Rachel’s urn in tow. These are the pictures Todd took. ❤️

julie camping in jeep wrangler 2015 jku

Took the kids camping a week or two ago and had a great time!  Looking forward to getting out there and doing more primitive camping.  We had no problems eating vegan and were all quite cozy.  Julie slept in my jeep, the boys slept in a 2 man tent and Todd and I slept on an air mattress in my Eureka Tent (Colorado made).

Julie even took her first turn behind the steering wheel!

julie camping in jeep wrangler 2015 jku

After a long day of doing Mom stuff, Mom of dying kid stuff and working on websites, I came home to this. A ramp into the airstream for Rachel, built by my friend Christopher.

Good friends are hard to come by and I have been very lucky in the friend department.

Airstream ramp

Aside from a lot of driving near the edge of a mountain (which terrifies me) we had a great day at Spring Creek. The trail is rated a 6-8 and with some good spotting, Wasabi made it through nicely. Continue reading “More of Spring Creek Colorado 2014” »

Rachel was supposed to come to the gun range with me back in Boston several months ago, but the day I had planned to take her she had a seizure. Yesterday we went up to Spring Creek which is just outside of Idaho Springs in Colorado. With the help of multiple, legal gun owners, Rachel was given the opportunity to handle an unloaded rifle and with assistance she was able to shoot it. Continue reading “Spring Creek, Colorado 7/6/2014” »

On the way home from Seattle we stopped in at Uncle Ben and Aunt Debbie’s house and had a little family reunion where me / John and the kids got to meet his Uncles and Aunts!!! We had an awesome time and wish we lived closer!

We also stopped at the Mall of America in our travels home and spent the afternoon at their indoor amusement park and had the BEST time. Air-conditioned amusement parks are definitely my kind of place! This picture is John and a few of the kids on one of the rides.

We had a great trip and I am so glad we did it!!!!!!

KIDS_HOOTERSWhen we got to Washington the kids were still looking for “wings” since the “Chinese Food” place we went to didn’t serve chicken wings (or beef on a stick for that matter). We were driving down the highway and I saw Hooters (the place where the ladies don’t wear a lot of clothes but are known for their wings) and we went! The staff in the Tacoma Hooters was extremely helpful and responsive, the merlot and salad were delcious as was the food the kids got (wings, fried pickles and potato logs). When we were getting ready to leave the staff asked us if we wanted a picture and I think you can tell by Boston’s face he was thrilled! <3

London was at Hooters with us but didn’t want to be in the picture (and I try not to be “that parent” and force them into the picture).

We have arrived in Eureka, California and are staying here for 2 days (well, 2 nights). On the way here from NV we had a pretty windy-roaded trip and it was slow moving once we crossed into California and left highway 80. Boston got car sick when we were only 20 minutes from the hotel, that was fun to clean up. 🙂

Today we are hanging out in Eureka which is a a beach town in northern California. It reminds me a lot of Florida and a New England beach town. Its funny how all beach towns kind of look the same. 🙂

Last night at dinner a family came over to our table and asked us about their journey. After a nice chat with a family from Connecticut, they donated $50 to Team Rachel!

Another Batten mom named Cheri arranged for Rachel and the kids to go horseback riding at the Colorado Springs Therapeutic Riding Center at the Mark Reyner Stables. When we arrived they were waiting and I was a little hesitant at first because most people don’t get Rachel, especially people who don’t know her. About 5 minutes into our session with the ladies and Bubba the horse I realized I could take a deep breath because they are very experienced with helping special needs kids with riding. One lady (Corey) led Rachel and Bubba and Nancy and her daughter walked on either side of Rachel and helped her with balance. I was most impressed with their handicap accessibility and the ramp they had to help kids mount the horses.

It was a wonderful time for all of the kids and a memory I will treasure forever.

Here is a link to their website: http://markreynerstables.com/

Alright, these road trip plans are coming together and we’ve added some new items to the bucket list. We are traveling from Boston MA through Colorado Springs CO to Eureka CA to Seattle WA and back to Boston via Bloomington, MN and Niagra Falls (NY). Take a look at our bucket list and let me know if you can think of any MUST SEE/TOUCH along our route.

This might be Rachel’s last BIG road trip so I really want to make it special. Batten Disease is slowly stealing my girl and I’m not about to have her miss out.

John will be flying out on the morning of July 4th to meet us in Seattle to enjoy a few days with my xhusband and his family (Rachel’s twin sisters) and then we’ll head back.

I’ve also found someone to do the minivan lettering (thank you Kerri @ Mayo Designs) “Batten Disease Road Trip for a Cure” and reference this website to try and get the full $7206 for Batten Disease research ($1 per mile).

If you can donate please click the link on the right that says “donate” or you can mail a check to: Team Rachel, 35 N Street, Hull MA 02045. You can also bring donations to The Good Geeks @ 667 Nantasket Avenue in Hull.

Thank you! <3

In one month from today we leave for our Boston to California/Seattle Batten Disease Awareness Road Trip. We’re having some decals made for the minivan and will be armed with awareness bracelets and literature, hoping to raise awareness and research money along the way. I’ll be driving out to Cali then up to Seattle with all 4 kids and when we get to Seattle John will fly out and spend a few days with us up there and then we’ll drive home hitting up Niagra Falls on the way back.

We’re paying for the road trip costs ourselves but want to raise $7206 which equals $1 per mile for the trip as well as awareness for this disease. If you can contribute please mail a check to:

Team Rachel
667 Nantasket Avenue
Hull, MA 02045
C/O Good Geeks

We are in the middle of completing our non-profit status so this tax dedictible. You can also paypal to team@teamrachel.com your donation. We currently have $56 raised! <3

This trip is a bucket list item, why not turn it into something more than that for all of the kids (Rachel included) suffering from this nasty disease.

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.

codzilla on boston harbor

I have wanted to take the kids on codzilla for about 2 years.  Maybe 1 year.  I forget. 🙂

We are going on Codzilla this sunday and will then be able to cross another item off our bucket list.  So excited!

Here is codzilla info: http://www.bostonharborcruises.com/codzilla/

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……………..

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