Kind words for Granny
Grandma Daniel or “Granny D” as I liked to call her, was a special lady who was admired by all who knew her. She set an example with her kindness, charisma, hospitality, and work ethic that all others could only hope to achieve. She opened up her home to us any time that we could come to visit, and always made sure that you never went without pocket money during your stay. I will miss visiting with Granny in her “museum” in her front parlor. My son Ryan and I often talk about how nice it was to visit with “Great Granny” when we stayed with her almost 2 years ago. She was a wonderful lady, and will be truly missed.
-Christopher Muir and family.
Dear Granny D. I want to thank you for making and raising such a great daughter who is my Mom, Eileen. Eileen has gone on to have 4 of her own children and now has 9 grandchildren. Eileen has bailed all four of us out many times when we have needed her, she has helped me tremendously to take care of Rachel who is a very special and sick child and Eileen also has an annoyingly positive outlook which has helped me to cope with the illness from which Rachel suffers. You can rest easy, Granny, knowing that you have left your mark on this world. Thank you so much.
With love, Kat von Tungeln and family from America. 
January
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.
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 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 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.
Camping Test Run
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!
Saturday – Random Photo
We’re back from our trip and the kids are vegging out in front of the TV and having a relaxing morning. I’m going through our trip pictures and organizing the entirety of my pictures. I just sent out an email to everyone I could think of, looking for pictures of my kids when they were really little. I’ve lost more pictures than I care to think about and am hoping to fill the void somewhat. I figured this would be a good time to include a picture of Julie that I took back in 2005, soon after our move to Colorado.
It is hard to look back at that time, a time when we had everything. We still have so much and are more lucky in our lives than most people will ever be. But still, living through Rachel’s life with Batten Disease is deafening at times and quite fun at others. There is life despite what she is going through, but it will never ever be the same. The joy will never (for me) be pure again. Despite my realism in this paragraph, it is my personal mission in life to hide my pain from my children so that they can enjoy their lives as much as possible. When the time comes that they realize the gravity of Rachel’s diagnosis, I will open up. But for now, those kids will enjoy their childhoods, even if it they don’t want to. LOL
Read More
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.
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