Rachel Update
Today’s picture is the kids with Santa, taken at the Hull MA Carousel Shop. I’ve put this picture in our yearly business Christmas card. :)Sunday Night
Just added a Christmas theme to Rachel’s site and updated on her rash. Check that out here.
I am taking the kids to Colorado again soon. It will be a quick trip before Christmas and I’m excited and nervous. Excited to see great friends and family, ecstatic to take the kids to see the Flying W Christmas Round-Up (its on THE list) but a bit nervous about the weather. I’ll definitely come back soon enough to not miss Christmas (KNOCK ON WOOD). If you see a tall geeky looking guy floating around Hull looking lost, buy him a coffee (medium regular please).
This weekend we have the Make A Wish Christmas Party which is being held in the Delta Hangar @ Boston Logan Airport. It will definitely be a once in a lifetime experience.
We’re opening up a second shop on January 1. I have been so busy working on that, staying up extremely late with John. I’ll be glad to get that part over and I’m very excited to see how the new shop plays out in the first couple of months. Lots of good things to come in 2011! Let’s hope they have that drug trial, that Rachel is eligible and they see a slowdown in disease progress. If only…
Kids and Santa 2011
Me. In a Bar.
I pulled this off of Barefoot Bob’s facebook page. That’s my brother and his girlfriend, Andrea.
Christmas week
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?
Read MoreChristmas Week
Gosh this has been a busy couple of UNEVENTFUL weeks! Just the way I want it! We had THE REAL Santa and his Elves pay a visit to our house on Friday night, complete with presents for the kids, the cats and Holly (our dog). The kids were SO excited!
This week is a short week at school and on Wednesday they are having “Polar Express” day and I’ll be going in to help out with that. Today at 12:30 a blind man is coming into Rachel’s special ed class to talk about being blind but Rachel gets out of school everyday at 11:15 so I’ll be bringing her home for lunch then taking her back in. I hope I get to stay and listen to him speak.
I hope everyone is enjoying this Holiday Season. I have plenty of pictures to post and will get around to doing that this week before Christmas.
Now tell me, what are your family plans this week? My children and I LOVE this time of year! If you quickly type out your traditions I’ll read them to my kiddos and maybe we’ll adopt some of your traditions. Thank you!!
Read MoreSanta Claus!
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!
Golden Tickets
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!
Read MoreChristmas Card Pictures
I’m still kind of bummed that we didn’t get to taking a family picture this year. We didn’t even send out Christmas cards this year. I really wanted to make it a tradition but, I guess, sometimes life gets in the way of traditions. That, and having 4 children who can’t be happy at the same time. As I lament, here is our card from last year. My hair was really short after shaving my head for St Baldrick’s…..
Christmas 2006 (Boston)
Christmas 2005 (Colorado)
Edited: We did take a picture this year but I really hate how 2/6 of us look and therefore, it doesn’t “count.”
Christmas 2007
Christmas 2007
This is a borderline acceptable picture. The only reason why I am posting it is because it is a good as it gets right now as far as family portraits. Boston was blatantly drawn on by London in green marker, I guess it is a good thing that London got an easel from Santa this year. That boy draws on EVERYTHING!
My hair looks like crap but I guess I should be grateful that I managed to find time to shower before we left the house for my parent’s house.
Boston’s Chicken Pox
Boston definitely didn’t get the chicken pox as severely as the girls had them and for whatever reason he recovered more quickly (and with less misery). London is still without any signs of the chicken pox, maybe he will make them appear on Christmas morning. Nice bruise, eh? It isn’t nearly as bad as London’s black eye from Halloween.
We had a pretty quick snowfall today and caused many hours of delays, especially for folks going through Boston. I’ll take some snow pictures tomorrow.
Julie has the best preschool teacher in the entire world! I found a very loving woman to watch the boys a few mornings a week that I really like and trust. Rachel is getting the help that she needs and is really starting to blossom. The only thing I “want” for is a real Christmas tree but that is simply not practical this year with all of the little fingers. Well, a “real” tree and a new cell phone but our contract is up in March so I’m waiting until then.
Office Christmas Party
John and I are both self employed. During the holidays we get SCREWED by the fact that we don’t have a company to give us a bonus or a holiday party to attend.
It’s our own damn fault. We need to have an office party.
Maybe I should link the Office Party up with John’s Birthday Party. hmmm
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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