Please consider supporting Team Rachel Race 4 A Cure on October 28th, 2012. A donation can be made by clicking the “Make a Donation” button on the right hand side of this page.
Thank you! Donations are tax deductible!Read More
We have gotten the Road Race registration live on Active.com and we’d like you to register! The road race is a 4 mile run or 2 mile walk from Hull High School in Hull, Massachusetts with a Halloween Theme and Costume Contest. Please email firstname.lastname@example.org with questions!
Link to Registration: http://www.active.com/page/event_details.htm?event_id=2049058&cmp=1745
All proceeds are being donated to Massachusetts General Center for Human Genetic Research for Juvenile Batten Disease Research! This race is in honor of Rachel, a really lovely little girl who is unaware that she dying from Juvenile Batten Disease all the while her Mom (me) and her family are trying to make sure that she gets to squeeze as much fun out of the time she does have on this earth. She was born completely perfect and since the age of about 6 she has gone completely blind, lost a great deal of her brain power and is now losing the abilities to walk and speak.
All we want from this race is to fund research of this disease to prevent another parent from having to lose their child. Thank you! <3
Photo Caption: Rachel and newborn Charlotte having a cuddle.Read More
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!!!!!!Read More
John’s mother is one of 13 and this is beautiful, smiling, radiant Auntie Julie who is 12 of 13. We drove into Seattle to have dinner with her and had a great time! Julie (my Juliebean) was with us as well! <3Read More
When 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).Read More
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!Read More
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…Read More
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/Read More
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 NickRead More
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…. <3Read More