As told by Kat

This blog is getting an upgrade and a facelift

// August 26th, 2010 // 1 Comment » // Life

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

Day 9 – Pikes Peak SUMMIT!

// August 9th, 2010 // 6 Comments » // Bucket List, Life, Vacation

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

// August 6th, 2010 // 2 Comments » // Bucket List, Life, Memories, Vacation

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

// August 6th, 2010 // 1 Comment » // Bucket List, Life, Memories, Vacation

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

// August 1st, 2010 // 3 Comments » // 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?

They aren’t deadbeats!

// July 29th, 2010 // 8 Comments » // Life

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

A year

// July 21st, 2010 // 11 Comments » // Batten, Life, Rachel, Vacation

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

// July 14th, 2010 // 5 Comments » // 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>

So much to say, little baby!

// June 22nd, 2010 // 3 Comments » // 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

We’re back from the cruise

// May 7th, 2010 // 10 Comments » // Life, Vacation

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.

I

// February 11th, 2010 // 1 Comment » // Batten, Kat, Life, Valentines

I am working on accepting that some children’t won’t grow up and live happily ever after. It is a concept that I live with and I struggle with every single day.

My children don’t see the struggle. This evening for dinner they had their choice of Mommy’s homemade chili or an unlimited supply of cupcakes. 3 / 4 chose cupcakes and my Julie chose both.

Who doesn’t love cupcakes? (Answer: No one I care to know).

Some kids don’t have a “happily ever after.” They just don’t.

Friday

// February 5th, 2010 // 2 Comments » // Doctor, Julie, Kat, Life

Today I am taking Julie to Children’s Hospital to have a recently discovered heart murmur checked out by a cardiologist.

Julie has spent the last week telling everyone she knows and then immediately following it up with “don’t worry, I’m not worried.”

She is such a good girl. I’m looking forward to having a few hours alone with her. Will update later.

The Bucket List

// January 24th, 2010 // 11 Comments » // Batten, Bucket List, Colorado, Julie, Kat, Life, London, Maine, Rachel

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>

Trip to Maine

// January 18th, 2010 // 2 Comments » // Batten, Boston, Bucket List, John, Julie, Kat, Life, London, Maine, Pictures, Rachel, Vacation

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).

Depressing

// January 14th, 2010 // 2 Comments » // Batten, Kat, Life, Rachel

I’m an upbeat person.

But this week when I was setting up 529 Savings accounts (through Upromise) for 3 out of 4 of my children, I became really, really depressed.

Her new meds are working well so right now I am focusing on TODAY and enjoying TODAY. Tomorrow might suck but as long as today is good I can handle the distant future.

What are you doing this week (or weekend) to enjoy the TODAY? You might not have a tomorrow so make sure TODAY counts.

At home day

// January 12th, 2010 // 3 Comments » // Life

Julie had a nasty migraine last night, her first one ever. I was looking up online and found that people who “get migraines” generally start getting them as early as age 5. I hope it was a one time thing because she was in a lot of pain through the night.

London has the sniffles and Boston is grouchy so I’ve kept all 3 of them home today. It was a half day for all of them today anyways (Rachel is the only one @ school today… weird change).

I went to look at a house for rent nearby, one that is all one level with no steps to get into it. I am going back tomorrow with some measurements to see if our stuff will fit (mainly our couches and king size bed). Its a small house but would be great for us as Rachel slows down and starts having more mobility issues. Not knowing when mobility issues are going to become a real problem is really hard because I’m a planner. She is already needing help to get up and down the stairs to get into our house (but she goes up to the second floor by herself).

Updated Entry at 5pm
Julie and I just made some cupcakes, London is playing Webkinz and Boston has been begging to look on amazon for toys all day. I made several donation runs of clothing (etc) today and did a good house clean out. I’ve started recycling but looking for free ways to recycle. So far I’ve found where to recycle clothes, paper, soda cans and plastic bags for free. And I’m trying to compost but haven’t bought an indoor composter (New England isn’t the best place to compost in the winter, I guess).

Do you compost? Share some info with me because I’d like to be better at it.

Another update

// January 8th, 2010 // 2 Comments » // Batten, Julie, Kat, Life, Rachel

Good week. Everyone was exhausted at bedtime tonight since it was the week after vacation. I took the kiddos ice skating on Tuesday and we’re going again this weekend. Next week I am taking Julie and London for their first day of skiing at a nearby mountain. I can’t say that we have the money to do all this fun stuff, but I can say that life is so stupidly short that I don’t see a choice.

Rachel is off the stimulant medication because I wasn’t seeing any difference. We’ve been waiting to see a NCL specialist neurologist in boston for quite a while but have just been informed that this neuro has gone on an immediate medical leave and Rachel’s appointment has been rescheduled for the end of april. I was telling our primary care all of this on Wednesday at Rachel’s follow up (which was also the same night that I had apparently scheduled Julie’s physical) and the primary care doctor agreed to let me give risperdal a shot. Quite a different medication than adderal but I am really hopeful that this medication will increase her quality of life and place Batten Disease on the back burner where it belongs!

Julie’s physical went well, she is absolutely perfect. She got her first shot (since she was about 4 months old) – the MMR, and had a lead test. The doctor heard a heart murmur that we had never heard before and has referred us out to a pediatric cardiologist so we can have it checked out. Its statistically going to be nothing but the doc and myself both agree that it needs to be checked out.

Last but not least, Rachel and Julie are selling girl scout cookies. If anyone wants to buy some, let me know!!!!!! Feel free to email me @ mrskatvon@gmail.com and you can either buy some boxes or sponsor some boxes and I’ll donate them to the next school function for the kiddos / teachers. Its up to you. The girls are excited to sell a couple of boxes, I am NOT excited because I cannot control myself near the caramel delights.

Best Sunday Ever!

// January 3rd, 2010 // 3 Comments » // Boston, John, Julie, Life, London, Rachel

Took the kids sledding in the morning, stood next to the shore in Hull watching the waves crash against the wall. Spent the afternoon taking all 4 children ice skating (RACHEL, TOO!!!). First time on the ice for Julie, London and Boston and they did great! I plan to go back next week with Rachel (and then some) during their free skate because it is supposedly very quiet during the week.

I asked the kids which activity they preferred and London was the only one who liked ice skating the best, the other 3 felt sledding was more fun. Rachel was a little hesitant to go sledding (can’t say that I blame her) but I went down with her the first time and shoved her ass down the hill the second time. After that she couldn’t get enough!

John went sledding for the first time in his life today and is quoted to say “that was fun.” I know he liked it more than that but we’ll take it.

Today rocked! I have a few iphone pics to share tomorrow.

Christmas week

// December 27th, 2009 // 4 Comments » // Batten, Birthday, Boston, Christmas, Food, Julie, Kat, Life, London, Rachel, Valentines

is drawing to a close and I’m up by myself tonight (a special shout out to our cat, Krabs, who is sitting next to me while I type). Christmas was good, we went to my Mom’s for Christmas eve and raced home to put out the reindeer dust, milk, cookies and carrots. Santa brought Rachel the “babydoll” stuff she asked for, PIXOS for Julie, an army tank for London and the Buzz Lightyear “yard” that Boston has been talking about non stop. It was a really nice day and the kids have finally calmed down from all of the excitement.

Today I brought up our Geotrax stuff that has been sitting in the basemenrt for at least a year and the kids played with it for HOURS. For whatever reason we don’t have a complete remote control train for the set (either the RC or the train but not a matched pair) and I looked everywhere. The kids manually pushed the trains for hours and had such a good time. I was going to play with the wii fit tonight but I didn’t have the heart to put away their train stuff. They are such good kids

I am absolutely broken over Rachel and what her disease will mean for her future. It is so unfair and I try not to think about it because I just cry hysterically and it doesn’t do me any good. I’m very good about keeping my emotion hidden, especially when I have to. She made me a box for Christmas at school with her paraprofessional with a little note that she had me read out loud. And here I am sobbing but doing everything I can to not let her hear my voice crack. Her hearing has become quite acute as her vision has been failing and she picks up on things she didn’t used to.

I hate this disease and how powerless she is. There is no fighting what is to come. No treatment. No hope. My child is slowly fading away and is generally unhappy, anxious, unsure and not living a life filled with quality and happiness.

And all I want to do is crawl under a rock and die for every moment that I fuss at her for things out of her control. The natural guilt of motherhood has always been difficult for me but it is borderline suffocating now. Balancing 3 presumably normal children who make a lot of noise and hopefully have very long lives ahead of them while taking good care of Rachel and making sure she has good moments and opportunities in her short life. That balance is absolutely impossible to strike and fills me with incredible guilt.

And while I have this inner symphony of juggling and guilt and batten disease and giving them good childhoods, I put a smile on my face and take them places and cook them dinner and show them how to “whack and unwrap” a chocolate orange and making sure they use the correct “Terry’s” terminology. How do you have a normal life in the face of the disease? I’m not sure of the answer but I do know that I am working my ass off to try and make things normal and wonderful and happy.

The kiddos and I already planning to make edible valentines for all of their classmates instead of the lame box o’ cards.

We’re also planning to learn how to make the PERFECT homemade Carrot cake to celebrate the birthdays of my mom, brother and his girlfriend (in March). Anyone have a good recipe?

Santa Claus!

// December 13th, 2009 // 5 Comments » // Christmas, Good Stuff, John, Julie, Kat, Life, London, Rachel, Winter

Our kiddos had their picture taken with Santa near the Paragon Park Carousel.

Rachel, Julie, London and Boston with Santa

Rachel on the Christmas Carousel Horse

No Batten Disease in these pictures!