My “old dog” learned a new party trick
When I took the kids down to Florida last month they had unlimited access to a swimming pool. During that time Julie reproved that she is a great swimmer, London learned how to swim and dive (!) and Rachel “let go” and learned how to swim! Here is a video of Rachel swimming!
Excuse the weird formatting, I took the video with my phone.
December Trip – Foul Ball
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!!!!
Read MoreDay 10 – Royal Gorge
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
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!)!!!!!
Day 9 – Pikes Peak SUMMIT!
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 8 – Colorado or Bust
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
Day 7 – Our last day in Missouri
The Drive: We laid low today because it was pretty hot but we did manage to cook up 2 fresh chickens that we bought yesterday @ Skyview Farms. The birds were fresh and we cooked them “beer can” style. Actually, my brother did all of the hard work…. The rest of us were great at taste testing. I gave them baths, did some laundry and packed. After dinner I drove the kids from Lee’s Summit, MO to Hays, KS so we could get a head start on our drive to Colorado.
Total Miles: 300
Day 6 – Cows and Goats!
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
Day 5b – Haley is in highschool!
The Drive: No Drive Today. We stayed local, went out to lunch, to highschool and ran some errands
Total Miles: 10 or so
My middle niece, Haley Rose, is starting High School in a matter of days and we went with her to check out her new school and locker. You are going to own that school (co-own with your big sister)! Out of all of my nieces and nephews, Haley is definitely my mini-me (for better or for worse). Ha! 
Day 5
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!
Day 4
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 3
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!
Day 2
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
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?
Read MoreWe went Lobstering!!!!
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!
A year
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!!
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Recent Comments