Codzilla

Posted by Kat in Bucket List, Life, Summer

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/

The Longest Summer

Posted by Kat in Life, School, Summer

I’ve been a Mom for 11 years now. 2 summers ago I spent a lot of it with Rachel at Children’s Hospital Boston and / or at a variety of doctors. Last summer me and the kids took a month long road trip visiting a pile of amazing places and doing other road trips. This summer we have spent a lot of it at home having days at the pool but not really doing a lot but having simply fun.

Simple fun apparently sucks! This has been the most difficult summer of my mothering career and it is a summer I plan to avenge. I know some of the difficulty surrounds Batten Disease and behavioral issues that trickle down to my other 3 children but that can only take so much blame.

School goes back in 3 weeks. All 4 of my children will be in school full-time! Rachel is going into 5th grade, Julie is going into 2nd (with the best teacher ever), London will be starting Kindergarten and Boston will be at Montessori Preschool. I have promised them their own individual “back to school” shopping trips for some new clothes / shoes and supplies. They are so excited for their turn to go shopping with “just Mommy” as opposed to dragging everyone along.

So the Back-To-School Countdown begins!

Burial Grounds

Posted by Kat in Summer

Weird conversations come up in my family and today was more of the same. While we were swimming our pool me and the kids were talking about “where we want to be buried.” I feel very strongly about cremation and the kids know that being buried means where we want our ashes spread. Here is the list of where:

Me: Scatter me on Pikes Peak as high up as you can go without throwing up lol
Rachel: Granny’s House or London, England
Julie: Orlando, FL
London: California
Boston: Boston (Boston Harbor), MA

All of them felt that Bermuda was a good back-up location.

Gosh this blog has been unloved. I can fix that for you, Ben.

Happy Last Day of School kids!!!!!!!!!!!!!

Day 1 – Hanging out with Uncle Chris

Posted by Kat in Life, Summer, Vacation

We’ve completed the first day of our trip, driving from Hull (MA) to Danbury (CT). The kids and I spent the entire day with my brother and his family. We went to Dunkies for breakfast, went to Stew Leonards (yay) and had the most delicious pizza for dinner. We even got to pet cows! We’re off to Hershey, PA tomorrow.

What have YOU done to make today memorable?

We went Lobstering!!!!

Posted by Kat in Batten, Summer, Vacation

With the help of the Duran Family and Captain Pete, we were able to take our four children on a real lobster boat and go lobstering! It was perfect. The weather was great, we didn’t stay out too long and Rachel got to bring some Lobsters home to eat! Here are 30 of the BEST pictures to say farewell to one more item on our bucket list:

We definitely flipped Batten Disease the bird today! Thank you so much to Jen, Dan and Pete!

Let the games begin!

Posted by Kat in Summer, Vacation

I’ve booked 3 hotels that will get me out to Kansas City with a few stops on the way. My brother and his family live in a KC suburb and we’ll be staying with them for a few days or so (depending how my kids do). Then we are headed out to Colorado and will probably stay in the Springs and hopefully people will come down to visit us, or invite us over. I think my kids will be tired of “meeting places” by then.

We are taking highway 70 on the way out and highway 80 on the way home. We’ll be stopping at Hershey Park on the way, milking a cow in Kansas City and going to Worlds of Fun. When we get out to Colorado we’ll go to Pikes Peak, Santa’s Workshop and the Royal Gorge. With any luck I’ll be able to go to Montagues with my ladies. And definitely some chipotle for lunch. Definitely.

Before we go and before I plan the trip home (with more stops to see more people – can’t wait), John and I have to purchase a flip down LCD screen for the minivan so we can play movies for them. I’ve always been anti-dvd player in my car, because they really do love music and books on tape, but I am absolutely caving for this journey.

Need to get the oil changed and my tires checked out.

Need to refill her meds.

Need to get my head checked. Stat.

So far, here is a list of places we are stopping:

Start: Hull, MA
Danbury, CT
Hershey, PA
Somerset, PA
Terre Haute, IN
Lee’s Summit, MO
Colorado Springs, CO
TBD
TBD
TBD
TBD
TBD
Stop: Hull, MA

We’re Home

Posted by Kat in Summer, Vacation

We spent the day in Storyland and decided to head home a little earlier than expected after the rain started to fall. What a magical place Storyland is. Here are some pictures:

Thank you Storyland and Make-A-Wish for the Free, Passport Passes.

Mini Road Trip

Posted by Kat in Life, Summer, Vacation

This morning the kids and I left for a mini road trip to New Hampshire. I’m kind of hoping that this will be a good test run before our road trip “out west” in August. Right before we went for a week in “Disney” with Make-A-Wish we went up to a smaller amusement park called “Canobie Lake Park” to get our feet wet.

So far so good. The girls (Rachel, specifically) only asked me if we “were there yet” about 14 times on the way up. It probably would have been up 40 times if I hadn’t cracked open the vault of children’s audio books that I have been saving up.

We got to the hotel today at 2pm and headed up to explore (via McDonalds) and ended up spending 3 hours at Clark’s Trading Post < click here to see their website>

The Trip of a Lifetime (a request)

Posted by Kat in Batten, Rachel, Summer, Vacation

We are headed out from here (Bostonish, Massachusetts) and driving down to spend a day with my brother in CT. From there we plan to take Highway 70 out to Kansas City (seeing another brother) and then out through Kansas City, bound for Colorado. I think we will take a different highway back, probably highway 80. We’re looking for family friendly places to go, maybe hole in the walls or well known places. I’d really like if you could share this blog entry with your friends/family so we could get some amazing suggestions.

This trip will take place in the first couple of weeks (ish) in August. This is a trip of a lifetime for Rachel (and my other three munchkins), I really want to make it count. Thank you.

Disturbing Dream

Posted by Kat in Summer, Vacation

I had the most disturbing dream of my life. One of my children was playing and wrapped a drape around his neck and that was the end of him. It was HORRIBLE. I guess it was my subconscious warning me to be extra careful with these kids when we go on our trips.

I’ve organized a dry run road trip for next week. We’ll be gone for 3 days in New Hampshire, stay in 2 hotels and go to Santa’s Village and Storyland.

Now we need to get cracking on our August plans. We are going down to Connecticut the last weekend in July and will head towards Missouri from there.

Wednesday

Posted by Kat in Batten, Boston, Julie, Kat, London, Rachel, Summer

I’ve spent the last few days writing a “paper” of sorts for my Biology Class. We had to select three diseases of the organelles and discuss the cause, symptoms and treatment for each. I selected Batten Disease (Disease of the Lysosome), Diamond-Blackfan Anemia (Disease of the Ribosome) and Leigh Disease (Disease of the Mitochondria).

It absolutely kills me that so few people have heard of any of these, know nothing about all of the rare diseases out there. If we don’t have awareness, we won’t be able to cure any of them. As selfish as I know it is, my disease of choice is Juvenile Batten Disease because my daughter suffers from it. I want to do so much for this disease but I just don’t know where to start. The science behind it is extremely interesting to me but it will take me years of school to be in a professional position to do any research. I have this child 3 feet from me listening to Star Wars Clone Wars and I need to do something to help her.

Here are some pictures from yesterday. The last picture is historical proof that my Mom (in her late sixties) will still climb into a gokart.

So much to say, little baby!

Posted by Kat in Kat, Life, Rachel, Summer

Alright. I’m here to blog but don’t freak out by the title and think I’m pregnant. I’m definitely not pregnant. LOL It’s the combined parts of very last part of a song done by the Dave Matthews Band. Sounded like a good enough title (even if I cut up a perfectly good song to do it).

Where I’m at. The kids are all out of school for the summer and the first week has gone really well. We’re hanging out inside in the mornings and going in the backyard for swimming / playing in the afternoon. I am determined to have the most memorable summer on record with them (for them). We have a lot of day trips planned and are even taking a long road trip as far as Kansas City and Colorado in August. My class finishes next week so I can really let loose after that.

Still in disbelief of what is to come, still very upset about the new signs of her disease popping up. Watching her struggle breaks my heart. I’d trade places with her a thousand times over. We have some good memories to make and I won’t let this stupid disease take her chances away, even if we have to shove a lot into this short time.

I’ll blog as I have more good things to say, some memories to share with you. You don’t need to see what kind of mess I am inside so I’ll show you the good stuff. We’re going to the carnival on Friday night and I promise to bring my camera. I’ll get some pool shots up later this week.

Click here to Watch So Much to Say – DMB