My Writings. My Thoughts.
The week in review
// December 11th, 2009 // 3 Comments » // Batten, Kat, Life // Batten, Kat, Life
Apparently I’ve been a little bit busy and I didn’t update for an entire week. First of all we must pay respect where it is due and proudly salute yesterday, Trash Day, as it is the best (BEST) day of the week. Yay for trash day!
We went to the Polar Express on Sunday night courtesy of the very, very wonderful Mother of one of Rachel’s favorite teachers. Thank you so much, we had a wonderful time. I took a ton of new pictures but haven’t been able to get any up for editing because my laptop was having issues. Sunday night I went to hop on the computer to take a look at the pictures from the train ride but ended up finding out that the hard drive COMPLETELY died. Not one shred of data can be recovered. Proof that it does happen to “computer people” as well as everyone else. I’ll pull the pictures up on the temporary laptop that John just set-up for me and put them on here.
On Wednesday the girls went out with the very, very wonderful daughter of the Polar Express gift giver and had an AMAZING time! I still don’t know what they did before they had dinner but I don’t think I’m supposed to know. 
This week has been busy with work and getting ready for Christmas. John has been rocking bedtime and bathtime this week and it has really helped keep me sane. My Mom has Rach, London and Boston right now, yesterday she had Julie for a few hours and they got to do some shopping.
Tonight Rachel, Julie and I are going to see the Hull High School put on “Willy Wonka” and I’m so excited! Rachel and I were supposed to go up to Maine this weekend but Lulu’s Mommy is sick so we are going up another weekend. Instead of Maine I have already replanned the weekend and are taking the kids all to see Santa on Saturday and we’ll be having Lobsters for dinner on Saturday night. Sunday I need to get the kids out individually to buy a gift for their secret santa person and hopefully tie up some projects around the house.
As far as a Rachel update: She had a really good week at school and at home, much better than last week. Her vision is still actively going away but I would say at a slower rate this past week or two than the previous two weeks. Put it this way, she was standing facing the black couch where Holly was sitting last night and she was looking for Holly but couldn’t see Holly in her peripheral vision. The contrast between the couch and Holly isn’t great but imagine looking at your dog and not being able to see her? The fact that Rachel was able to hide her difficulties for so long as best as she did is so amazing to me. She deserves a medal. I guess thats why I’m springing for Lobster on Friday night. Batten Disease took a backseat this past week and I couldn’t be happier!
The sun is shining over our house
// December 4th, 2009 // 4 Comments » // Life // Life
Trash day has been once again celebrated, and… Rachel is in great spirits. Life is good!
This weekend we have two girl scouts things (one for each girl), we’re taking Holly to the mall for Doggy pictures tonight and baking cookies for the drama kids. Sunday we are going POLAR EXPRESS!!!!!!!!!!!!!!!!!
This weekend, my friends, is going to kick ass!
Youtube
// December 2nd, 2009 // 1 Comment » // Youtube // Youtube
I’ve started to add a few videos into my youtube account (mrskatvon) and take them out of my old, workish one.
Word of the day
// December 1st, 2009 // 4 Comments » // Batten // Batten
Couple of days, actually. We’ve been having a rough go of it with Rachel. I’m crossing my fingers for a good couple of days starting tomorrow. We took Holly to be groomed today at Sunshine Pet (www.sunshinepet.com) and are about to go and pick her up. Hopefully that will lift the word of the day from her a little bit, or at least raise her mood.
Word of the day: dementia
Wiki: http://en.wikipedia.org/wiki/Dementia
Google Health: https://health.google.com/health/ref/Dementia
WebMD: http://www.webmd.com/alzheimers/tc/dementia-symptoms
Lots of anger, irritability, lack of concern for others, lack of reality, immediate (IMMEDIATE) screamed demands. Frustration, crying, throwing, hitting, flipping out, inability to prevent herself from acting out on intense feelings. And on and on and on.
Today this disease might have won but I swear that I am going to kick its ass this weekend and have a great, GREAT time with my kiddos. Stupid batten disease. Take a couple of days off because it’s my turn to have her!
Golden Tickets
// November 29th, 2009 // 4 Comments » // Birthday, Christmas // Birthday, Christmas
Yesterday was the Hull Holiday Showcase and there was a BATTEN DISEASE TABLE thanks to Geri Calos, her kiddos and the extremely mature “Hull Theatre Arts” (aka Drama) kids. Many, many thanks to the kids that sat at the table all day and helped little kids glue, stick and tape ornaments together to raise money for the Batten Disease Support and Research Association!
The Hull High School Theatre Arts is putting on a play in 2 weeks and we can’t wait to go! Willy Wonka and the Chocolate Factory is currently being advertised on Rachel’s new shirt that she bought at the holiday showcase yesterday. She is very proud to be advertising with the new shirt. I tried to take a picture but Rachel couldn’t stand still long enough for me to snap a picture of it.
I’ve been spending some time trying to learn ways to naturally clear out Rachel’s cells via diet. Last night she had a ridiculously huge portion of haddock. Julie and London wouldn’t try it and Boston gave it a taste but thought it was “yucky.” I’m not a huge fan of fish but I’ll learn to like it if that means we extend Rachel’s “good life” longer. I’m not going to try and extend her life just to keep her alive. Quality of life is my NUMBER ONE priority for Rachel.
Today is Sunday and we are having our usual lazy day on Sunday. Laundry, dishes, play at the park and maybe build another shelf for toys. I’m also planning to take Holly on a couple of walks and bringing a different kiddo each time.
Thinking about christmas and trying to think about what to get the kiddos. Does anyone know if they make a half a bike that I can attach to my bike for Rachel. I’ve found lots of tandem bikes but her legs aren’t long enough for a tandem adult bike. I’d like a second seat, wheel and pedals that can attach to my bike so we can ride together. She needs more exercise than she is getting and I know she loved riding her bike that summer.
Life rules. Enjoy your Sunday!
Thanksgiving 2009
// November 26th, 2009 // 3 Comments » // Thanksgiving // Thanksgiving
Thanksgiving should be renamed: “Key Lime Pie Day.”
Today was a good day. Good food made by my Mom and awesome desserts made by my other half. Rachel had a good day today, she has been “entertaining” my cousin and his wife who are here from England. I spent 10 minutes watching her watch TV before bedtime tonight and was humbled by how much she overcomes on a daily basis and how truly little (very little) Rachel complains.
Life is so humbling if you stop and look around for a minute.
Love my kids. Love Key Lime pie. Anyone else out there love a good key lime pie?
People are wonderful
// November 25th, 2009 // 5 Comments » // Life // Life
We have a customer that knows another family that has a son (within 30 minutes of us) that has Juvenile Batten Disease. The customer put us in touch some weeks ago and it was kind of nice to be able to talk to another person who understands (etc etc etc). Anyways, the customer put a note on our door last night and put a jar of her homemade tangerine / cranberry sauce underneath our tree on the porch. Very, very thoughtful.
Today John handed me a card from the photographer that took our wedding pictures and inside the card was a Gift Certificate for a free family portrait! So amazing! John and I think we’d like to do another family picture when there is snow on the ground. Totally amazing!
On Saturday the Mayor of Hull (Geri) is holding the annual Hull Holiday Showcase and, with the help of her kiddos, is putting together a “Batten Disease Ornament table” that will have Batten Disease info and offer kiddos the chance to make ornaments (including one for Rachel) and contribute to a paper chain for Rachel. The proceeds are all going directly to the BDSRA.
People are truly awesome. Seriously. I just sent our “Good Geek” Christmas cards to the printer. If you want one, please email me your address. The picture on the card is from our Disney trip and might look nice on your fridge. My email is mrskatvon@gmail.com
xoxoxoxoxoxo
Toosday
// November 24th, 2009 // 4 Comments » // Life // Life
I realized today that trash day isn’t until Friday this week. Its kind of like a personal challenge to me. Waiting out an extra day, making sure I spent my extra day wisely. I’m sure its some kind of weird sickness to look forward to trash day as much as I do but I figure I’d rather have this sickness than something really bad. LOL
We’re having Thanksgiving with my Mom, Dad, Brother and 2 (favorite) Euro-relatives that are here for the week.
Thanksgiving is my least favorite holiday. I am looking forward to a couple of days break this year but Thanksgiving still lands on the bottom of the holiday totem pole for me. I feel thankful every single day of the year. I know lots of people say that but I truly do.
Thankful that I am sane, thankful that I am healthy with lungs that work and a heart that beats. Thankful that I have 4 (relatively) healthy children that adore me when I make them cookies and have 4 little faces that light up (mostly) when they see me. I make good decisions (finally), I am a good advocate for my children and I am extremely enthusiastic about the little things.
What are you thankful for, every day of the year?
Christmas lights 1.1
// November 22nd, 2009 // 5 Comments » // Life // Life
Need one more weekend to finish upbut this is how it looks. The kids are so excited!
The weekend
// November 21st, 2009 // 7 Comments » // Life // Life
First of all, lets pay due respect to trash day that was on thursday. We love our trash day!
Friday night Julie had Daisy Scouts and in my alone time between dropping her off and picking her up I swung by the pizza place near our house and preordered dinner. John and Rachel walked to the pizza place and the boys and I ran and grabbed Julie then all met to have a nice dinner. I like that pizza place because its affordable and they are becoming to know us as regulars. People who know us are far more forgiving than perfect strangers. The pizza place is about to open up a small breakfast bar on the other side of their building space that isn’t being used right now. I look forward to trying it out.
Saturday (today) I took Julie out for a pastry at the bakery in our town and we brought home treats. While we were there another Mom and her girls (one of which is in kindergarten with Julie) was doing the same thing we were and we ended up agreeing to meet at the park near our house. We were at the park for nearly 2 hours! They are going to sleep well tonight.
Once John closes the shop I am dragging the 5 of them to find a real Christmas tree that we’re going to put out on the porch and decorate the hell out of it.
Tonight Lulu is coming over for dinner and to see the kiddos. I’m hoping she’ll be able to take Rachel and Holly on a short walk while I cleanup.
On Sunday John is smoking ribs and Uncle Clive (and maybe my parents?) are coming over. Definitely going to bake some cookies, too.
So if you wonder how I am dealing withthis disease….. read my answer above. We’re doing things that normal families do, regardless of her outbursts and personal challenges. Lightning strikes in all sorts of ways. Just try and enjoy every day without worrying when lightning will strike you. Don’t waste your time on this earth worrying about what might happen because there isn’t a damn thing you can do to prevent random, horrible things from happening.
Enjoy your weekend. Do something wonderful. Think of Rachel .
You have a choice in life. You can choose to have a good day regardless of your challenges or you can let your challenges choose for you.
Choose wisely. (Post a comment if you agree. Tell me what YOU did this weekend to make it wonderful!)
Lightning Strike
// November 18th, 2009 // 3 Comments » // Life // Life
Not sure why I titled this entry “lightning strike” because there isn’t a lot to elaborate on. Rachel has been figuratively struck by lightning and the whole situation sucks on so many different levels. We’re just trying to cope with the “today” and the issues with her vision, cognition, behavior and outbursts. Thinking about the “tomorrow” makes it a lot worse. Seeing my other 3 children mimic some of the behaviors that she models totally sucks but most of the people that witness it realize that they are copying Rachel and the people we know have been pretty understanding.
I’m at the shop today. They boys are at daycare until 5, Julie is at school until 445 and Rachel is out to lunch with John. I’m not a big fan of manning the shop but I’m so glad that John stole a couple of hours to go with Rachel to Lowes and Lunch. Those are the most important moments.
Spending more time working which has been good for me, personally. My Mom has been helping a lot with Rachel because I have very few options as far as her care. I can’t find “just anyone” to watch her the way I can a “regular kid” so its pretty much either my Mom or John. That part has been challening, especially as Rachel gets out of school at 11:15am on the 4 days she goes every week. Maybe she will be able to extend her day a little bit but I’m not holding my breath that she could sustain a longer day. Today at 2pm is her PT evaluation, I’ll be interested to see what they say.
Going out tomorrow night for a couple of drinks. Looking forward to it!
Taking Julie out for a quick nibble at the bakery in town on Saturday morning. Totally looking forward to that!
Must plan something special for Boston next because its his turn.
Happy 6th Anniversary
// November 15th, 2009 // 9 Comments » // John, Kat // John, Kat
John and I were married 6 years ago today. I can’t imagine stuffing any more stuff into the time we have been together (8 years). If you had told me that this guy (John) on yahoo personals was the one I was going to marry, have 3 more kids with and everything else that has happened, I would have died laughing (and crying). Life is full of surprises.
Blank
// November 10th, 2009 // 2 Comments » // Boston, John, Julie, Kat, Life, London, Rachel, School, Thanksgiving // Boston, John, Julie, Kat, Life, London, Rachel, School, Thanksgiving
Can’t think of anything to write about tonight. I still have a horrible cold / upper respiratory infection that seems to be a “super cold.” I have been having lots of irrational thoughts about never leaving the house again and wearing a face mask to check the mail. Definitely the virus “talking.” Julie thinks I need to wash my hands more.
The kids had microwaved hot dogs with ketchup for dinner. Kind of proves that I feel terrible.
Both Julie and London brought home “manilla turkeys” to decorate and I doubt that our dining room carpet will ever recover from all of the glitter it soaked up tonight. Julie’s turkey is so thick with glitter that I think it needs a custom piece of plywood just to support the weight.
Rachel had a good entrance and exit to school today. We brought Holly (our dog) to school with us and that most certainly lifted her mood and made the transition easier. I think I better bake some cookies for them tomorrow. You can never have a mom who bakes too many cookies, right?
- Eileen/Granny said: Rachel & Boston & Granny & Grandad had...
- Eileen/Granny said: Today Rachel asked if I had a bucket list. Calmly ...
- JJ said: I hope she got a good report. Thinking of you guys...
- John said: It won't. This morning Rachel was up at 5:30 I...
- Annette Renee White said: I have a bucket list too! I am currently planning ...
- ~L~ said: Way cool, Kat, way cool. Just perfect!...
