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(read the rest)

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(read the rest)

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(read the rest)

I took Rachel to her second appointment with her Pediatric Rheumatologist and he confirmed that she does have Lupus, also known as Systemic Lupus Erthymisomethingerother. How does a beautiful and innocent kid end up getting an early death sentence and Lupus? It’s total bullshit and rather than be angry this fine evening I would like to pose a question to those folks that still read my infrequently updated blog. What do you live for? Last year I spent many weeks living to cross off items on the bucket list, taking my kids to multiple states and experiencing all sorts of awesome things. Already this year I have driven my kids down to Florida and back and watched the miracle of Rachel and London learn how to swim. I have personally been living to make sure Rachel, Julie, London and Boston get to experience countless amazing days while Rachel can. This year I want to continue this mission but maybe travel a little less (my new Jeep is not so good with gas mileage). Planning on sharpening our camping skills, maybe get a little sailboat. I’m looking for more adventuring ideas, things to enjoy, experience, to LIVE for. So… What do(read the rest)

Can’t believe it is January already. Julie started back to school a few weeks ago and is enjoying her social time, she is pretty overwhelmed with all of the stimulation but loves it overall. London is starting preschool next week in the afternoons and they are all going to Art Class again starting later this week. Rachel was kind of upset about not going but I said she could bring some art supplies to Granny’s house as she’ll be at my Mom’s for her regular Friday night “date.” Rachel is about 95% blind. The other five includes a spec of vision (literally a spec) out of the corner of at least one eye and she still has “light / dark perception.” She is handling it as well as can be expected. I try to get her to talk about it and how she feels and if she has any questions about her blindness and for the most part she is as happy as can be expected (and then some). She and I are going to the University of Rochester next week for a “check in” to see how she is progressing as they are studying Juvenile Batten Disease. My fingers(read the rest)

Let’s see. Me and the kids planned a Trip of a Lifetime from Boston to Colorado, stopping to see family in Kansas City. The goal of the trip was to see the Flying W Christmas Round-up (Bucket List item). It didn’t quite happen that way. My minivan broke down in PA (water pump died and overheating commenced). Once the van was fixed we hit lots of snow. We ended up getting to Kansas City and stayed a few days but saw more weather heading through Colorado and Kansas and I decided it was safer to drive home. I will do this trip again next year (earlier in the Flying W Christmas Season) and we will GET THERE!!!!

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