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(read the rest)

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:(read the rest)

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(read the rest)

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