→ BATTEN DISEASE

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

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……………..

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 you live for?

Took this picture of Rachel today. We clocked 100 miles with the Jeep’s top down today. It was 65 degrees in Massachusetts today!

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 are crossed that her disease progression is considered slow for her age.

The day after we get back from NY I am driving down the kids to Florida to stay the week in a house I booked months ago with a heated pool in the back porch. One day at Disney (can’t believe how expensive it is) and another day at a petting zoo. Our Make a Wish trip was amazing yet difficult for Rachel (and us) because she wasn’t on the right medication and it was so hot. My brother, nephews and my other brother and his girlfriend (Andrea) are all planning on coming down during the week.

Get out your fine china (I am so not fancy enough to ever own any). Wear your best jewelry (I made Julie wear her new princess earrings today despite her fear she might lose them) and treat this day like its your last on earth. Some days are harder than others but you should try every single day.

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!!!!

Rachel has been suffering from a nasty rash.  It started off slow around her shoulders and it has progressed down her body, leaving a whiteness in the pigmentation of her skin.  I’m concerned that it is an autoimmune rash and actually brought her to the doctor on Tuesday for an exam and blood work.  I asked the doctor to test her for Lupus markers and hopefully we’ll know in the next couple of days.  The rash is nasty and seemingly unrelated to medication or Batten Disease.  She is quite uncomfortable because its currently in her inner and outer thigh area so hopefully that will clear up or move soon. I’m also waiting on a Dermatology referral to Boston Medical Center.

 

Good News!  We are (me and the 4 kids) headed to Colorado for a quick trip to see the most AMAZING friends  and family in Kansas City and to cross The Flying W Christmas Round-Up from our Bucket List. Rachel has loved the Flying W since she was an infant so this should be a truly remarkable experience for her and for the other kids.  They are STOKED about going to the 8pm showing so they get to stay up!

 

This Saturday I am taking the kids (with the help of my Mom) to the Make-A-Wish Christmas party at Boston’s Logan Airport.  Apparently they have the party *IN* the Delta Airlines Hangar so I am really excited for the kids to see that.

 

Merry Christmas. 🙂  Today’s picture is the kids with Santa, taken at the Hull MA Carousel Shop.  I’ve put this picture in our yearly business Christmas card.  🙂

Is wonderful and yet it sucks. I don’t think anyone has a truly blissful life like I thought possible when I was a child. I’m going to focus on the good things right now because I think they outweigh the bad at this moment.

The Good

  • We’re (I’m) selling lots of candles for the holidays to raise money for Batten Disease Research
  • I’m taking the kids on another HUGE road trip in a few weeks and we’re going to see the Flying W
  • The Good Geeks (our business) is about to open up another shop with another in the works
  • Rachel’s medication seems to be helping without making her eat and eat and eat
  • Julie can READ!!!

Things are going well today and while they don’t go well a lot with a “sick child”, I wanted to write this one down to reflect on in a day or two when we’ve had a major catastrophe (relatively speaking, of course).

I’d say version 2.0 (since we took a trip in August) but I feel more comfortable adding a sub version to this trip since its still 2010 (and version 2.0 is planned for January 2011).

I’m taking the kids back to Colorado next month for a week and can’t wait. We’re going to have an early Turkey Day with the best of friends and if we’re lucky we’ll get to see some snow. Also hoping to find somewhere that has snow tubing already going by then but won’t mention it to the kids until I get some good news.

And we’re also hoping that the Flying W will have already started up their Christmas Show by then. Rachel loves their music.

The Drive: Today I drove the kids and I from the northern part of Colorado Springs to Cañon City (and back). We had free tickets through our Make-A-Wish trip and Give Kids the World and I thought it would be a great time for the kids. Yet another Bucket List item got crossed off today!

The Royal Gorge is the proud home of America’s highest suspension bridge and is sure to scare the crap out of you if you, like me, are afraid of falling from heights. We didn’t make it all the way across the bridge because the “swaying” made me really uncomfortable and I didn’t want to scare the kids. I really enjoyed the incline railway (click here to see it) and I took a bunch of pictures of the kids at the bottom, next to the beautiful Arkansas river. There were a lot of stairs all over this place and it became quite difficult to manage for Rachel. I carried her (all 110 pounds) down 2.5 flights of extremely steep stairs to the bottom of the gorge, piggyback style. Worth. Every. Last. Step.

Total Miles: About 100

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

Royal Gorge

And tonight I went out to coffee with some great friends. I’m waiting on my girls to email me some of their pictures but I did have one I felt was good enough to post. Here is JJ and Mel (Marie and Susan came too!)!!!!!

Coffee with my girls

The drive: Not much of a drive today because we puttered around Colorado Springs. Checked out the camp grounds that I had found online and booked a couple of days in there for later this week. If you haven’t noticed yet I’m planning things out without really planning things. I find more flexibility for the children leads to more fun.

Total miles: Maybe 25?

Today we did two things on our Bucket List! First, we got to ride the Cog Railway and eat dinner during the trip. Second, we climbed at 14,110 feet in our cog rail car to the top of PIKES PEAK! Climbing Pikes Peak in a cog car is one of my most favorite experiences of my entire life. I am so glad we went and we had a great time.

The summit of the mountain was very cold, about 30 degrees with who knows how much more taken off for wind chill. It was windy, it was in a driving rain with 4 scared and borderline soggy little cherubs. If I can put this trip in my top 3 list of favorite things ever you can guess how beautiful and amazing it was.

We better add some things to our bucket list because we are crossing them off left and right this week. Kids had a great day and we even swam in the hotel pool for a few minutes before (yet another) storm rolled through and the lightning kicked us out.

A special mention goes to my great friend Melissa who printed out the cog railway coupon for us. We love you!

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

Cog Railway to Pikes Peak

The Drive: Hays, KS to Colorado Springs, CO to Pueblo, CO to Colorado Springs, CO.

We drove down to Pueblo to have a BBQ with great friends then headed to our hotel in Colorado Springs late last night. London freaked out at night when a regular lightning storm rolled through, he was so upset! Our hotel is pretty nice and we’re staying here until Wednesday then will head to the campgrounds for a couple of nights.

We had a little time in between getting to Colorado Springs (where we used to live) and having to leave for the bbq in Pueblo so I drove down memory lane. I was taken back at how emotional the ride was… driving past restaurants, parks and other places we used to go when Rachel was much more healthy/normal/sighted than she is now. Thinking back to then makes the losses more obvious and as you can imagine I was pretty upset for a short while.

We also stopped at our old house and dropped in on our neighbor, Jacquie! We haven’t seen her in a few years when she came out to visit us!!! It has definitely been too long since I’ve seen my friends out here.

Total Miles: 399

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

Jamie, Melissa and the BBQ

The drive: Today we drove from Lee’s Summit, MO to Pleasanton, KS and back to visit Skyview Farms. They generously invited us to come and milk cows with them. We spent a few hours on their farm and they were absolutely wonderful with Rachel and all of the kids. We got to meet cows, kitties and goats. We all had a great time and crossed “Milk a Cow” off of our Bucket List!

Total miles: 144

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

Cows!!!

The Drive: We’re staying in “Kansas City” for the next few days so we’re not really driving.

We hung out at my brother’s house, went to Target in the morning and swimming in the afternoon. At night we went to the nearby ice cream shop called “Here’s Your Scoop” with my family, Adrian’s family and Sarah’s BFF (who I really like).

PICTURES!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

Here's your Scoop!

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