As told by Kat » Life

This blog is getting an upgrade and a facelift

Kat — Thu, 26 Aug 2010 16:04:08 +0000

It needs to more look inviting to my (albeit small but wonderful) audience. (Hi Mom).

Day 9 – Pikes Peak SUMMIT!

Kat — Tue, 10 Aug 2010 04:59:46 +0000

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!

Day 4

Kat — Fri, 06 Aug 2010 17:52:11 +0000

The Drive: Today we drove from Terre Haute, IN to Lee’s Summit, MO

Total Miles: 405

Today was a bit easier on me to convince the kids that another day in the car was a “good thing.” (Thank you Martha Stewart). At the end of this leg we got to see Adrian, Linda, Sarah, Haley and Abby. (My brother, his wife and daughters).

Day 2

Kat — Fri, 06 Aug 2010 17:12:45 +0000

The drive: Today we drove from Danbury, CT to Hershey PA and then to Somerset, PA

Total miles: 382

We got up fairly early and bought gas before heading on the road down I-84 and went straight to Hershey Park. After spending about 3.5 hours in the park and having lunch we headed another 2.5 hours to Somerset, PA where we stayed in a hotel for the night.

Day 1 – Hanging out with Uncle Chris

Kat — Mon, 02 Aug 2010 02:07:56 +0000

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?

They aren’t deadbeats!

Kat — Thu, 29 Jul 2010 13:47:52 +0000

John found these in our coop this morning. Good girls!!! They have laid their first eggs!!!

A year

Kat — Wed, 21 Jul 2010 14:54:53 +0000

It has been a year since Rachel was diagnosed with Juvenile Batten Disease. It has been a tough year for me and for John, but about the same as the year before we were diagnosed for Rachel and the kids. She has definitely lost most of her vision in the last 2 years and has been adjusting to that. Its interesting that her brain is slowing down, her gait is affected, she is nearing complete blindness but she never complains and rarely mentions difficulties.

Although I am sad and pretty much want to drink myself into absolute oblivion, I have a stronger resolve to make sure that our road trip is LITERALLY the trip of her lifetime. I want to have extra patience, be extra excited, plan extra harder and do everything twice as good. I don’t want to waste too much time being depressed about her disease because that is futile.

With any luck, I will live through this.

With any luck, I will have three children grow up and be healthy / generally happy adults. I need to make sure their memories are extra good and that Batten Disease isn’t what they think of first when they look back.

With all of that said, here is a map of our approximate travel route. The purple line on the bottom is how we are getting to KC / CO… and the line at the top is the route we are taking to get home. Click on the map and you’ll see a bigger version.

If you have any suggestions with good stopping places or “MUST SEE” places, please let me know. This trips means the world to me.

Please repost this on your blog or facebook page. I’d love more input!!

Mini Road Trip

Kat — Wed, 14 Jul 2010 22:24:27 +0000

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 kids are watching TV in our hotel room (I’m determined to find ONE hotel chain to use and earn some points) and we’re about to explore to see if they have a coke and/or ice machine. Momma’s dying for a diet coke and their lemonade jug is a little warm.

Pictures later. If you’re reading this take a minute to say hello.

So much to say, little baby!

Kat — Tue, 22 Jun 2010 12:49:30 +0000

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

We’re back from the cruise

Kat — Sat, 08 May 2010 02:52:38 +0000

Its been over a month since I’ve updated this blog, can’t believe it has been so long. We just spent 7 days on the Norwegian Spirit and went from Boston to Bermuda. John, myself, the children and my Mom all went and split two rooms.

Here is a link to the ship info

Here are a few of the pictures, most of you who read my blog know who the people are.