→ BATTEN DISEASE

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!

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).

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

Kansas City Day 1

The Drive: Today we drove from Somerset, PA to Terre Haute, IN.

Total Miles: 485

The hotel in Terre Haute was the worst I have EVER stayed in. It was 90 something degrees and too hot to even consider using the outside pool. The IHOP, however, was splendid!

Terre Haute hotel

Terre Haute hotel

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.

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

Hershey Park

The night before last I put up our new tent so the kids and I could have a dry run for camping. John’s back has been bothering him so we gave him a pass to sleep indoors (the house was 10 feet from our camp site). When me and the kids finally got settled, Rachel decided she had her fill and we got her tucked into bed. London, Boston, Julie and I all survived the dry run! I think if the weather is a little cooler the next time we try and I get Rachel a sleeping mat or something to cushion her, she will stay with us the whole night! Here are some pictures, the last one is my cot (yes, I cheated)….

This is another item on our bucket list and we’re in progress. Rachel has to complete a night with us, preferably at a real camp site and then we can cross it off the list! I’ll probably stop at a KOA site on the way home on our road trip.

Let the record state that it is a royal pain in the ass for one adult to try and put up a tent without the help of another adult. I was ready to pass out and would not have been able to put it up without the help of Rachel (who is very strong) and Julie. Thank you girls!

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

Camping Dry Run

So if you follow Rachel’s facebook page or know me “in real life” you’ll probably know that the idea of a Bucket List has been the topic of several conversations between me and the kiddos. They don’t understand that this has ANYTHING to do with death so please don’t comment or email me worried that I have a doom and gloom attitude that is negatively affecting them. My positivity is borderline disgusting. LOL

I’ve put “The Bucket List” on the top right of the blog and plan to add many, many more things to the list as the weeks go by. The plan is to take a very long (nearly) cross country trip stretching from Boston up north to Maine and all the way West to Kansas City then Colorado and back. We have free access to several amusement parks through September and I’d like to take advantage of this gift from “Give Kids the World” (the place we stayed in Florida on our Make A Wish trip).

I’m also setting up a FLICKR account to link our pictures from all of these successful missions to show the world that life is too short to wait on the important things in life. Life is too short, people. It’s a fact. Batten Disease is such a shit disease, I refuse to let it steal my Rachel until she has had the chance to use up her body and slides into home base covered in fattening food and exhausted from life.

The more afternoons I can get my children sticky with ice cream this summer, the better! I’ll leave you with a picture from Summer 2009 (the extra 9 year old boy in the picture is my nephew Ryan).

You keep that thumb in the up position, baby. Hold on tight because I’m going to drag you all over this country!!! 🙂

For the unaware, “The Bucket List” was a movie that came out in 2007. < link to IMDB>

I scooped John and the kids up and took them to Maine for the weekend. We had a great time although I had promised to tray and do some sledding or snow tubing. We met a family of chickens and a herd of alpacas, went swimming and hot tubbing and took the kiddos into a sauna for the first time. We even brought home 3 dozen farm fresh eggs which have already begun the transformation into baked goods. 🙂

Here are some of the pictures which I will directly share from facebook (you don’t need a facebook account to see ’em).

http://www.facebook.com/album.php?aid=374918&id=266424125552

We had THE BEST time! Here is my favorite picture of Rachel from the weekend. Just goes to show that you don’t have to see well to have a fun and full life. Experiences like this are more valuable to Rachel than to a sighted child because of her tactile senses.

I think I think I did a sufficient job at flipping Batten Disease off this weekend. Tomorrow morning we’re going ice skating for an hour. Can’t wait! Gotta get them into a swimming pool more often. They love the water (just like their Momma) and love the hottub (just like their Daddy).

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