Today is a great day!
Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol). I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her. Thank you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years. :)
I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months. I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks. I guess my Mom had mental telepathy and for that I am so grateful. We have one official walker!!!!
This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf. Plus the prizes and raffle items. I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday. They raised about $30,000!!!! My goal is to raise $10,000 this year for our walk/run/raffle.
Have a great day today if you read this entry!!!
Photo: Rachel (6), Kat (?) and Julie (2.5). Not really easily seen is London who was 8 days past his due date and born the next day. We were at a pumpkin patch in Colorado.
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Happy 5th Birthday, London
My little introvert who reminds me of his Daddy. You have curls most women (including your mother) would pay good money for. We love you and won’t give up on making you play outside. You’ll probably end up owning a large software development firm and will create and indoor “outside.” Love you so much and anytime you want cookies just call me up and I’ll ship ‘em.
London Jack opening his new sheets (his request) with Saylor Moon looking on. They'd make some cute kids in about 20 years...
Happy 4th Birthday, Boston
You are such a special, obnoxious, wonderful, loving little guy. I don’t think the world will ever be prepared for you to join it as an adult and I constantly daydream about what you will accomplish. I’m so proud of you.
Boston open his Toy Story 3 presents on his birthday
Happy Birthday to Me!
Today I turn the big 3-2. Please consider a small donation to the BDSRA to celebrate with me, it might mean the difference between no cure and THE CURE to save my “little” girl.
Thank you!
http://www.bdsra.org/donate.html
Read MoreHappy 10th Birthday, Rachel!!
I hope you have a great day today and don’t explode while waiting for your party on Sunday. I love you so much and I know so many other people love you, too!
Julie turns 6
Today is her friend party and tomorrow is her actual birthday. Can’t believe my “little” girl is 6!!!! Pictures to follow…
Read MoreChristmas 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 MoreGolden 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 MoreThe stages of grief
I just found myself googling the 4 stages of grief only to find out that there are 5. Who knew?
I’m assuming that its normal to bounce around from one stage to the next and back again?
Anyways, here are the four FIVE stages of grief.
1. Denial (Check) and Isolation (No) (Doesn’t that make six stages?)
2. Anger. (Check)
3. Bargaining. (No)
4. Depression. (No. I’m so sad for her and what she will miss out on but I won’t give into depression and miss out on the good moments and the good days)
5. Acceptance. (No)
I can’t imagine the day that the warm sun rises and I actually feel acceptance.
I tried to spend a few moments today imagining what Rachel would do if she were in my shoes. What would be her plan of attack if it were her daughter with this disease. What would she do? Because whatever *that* is, is what I want to be doing. I need to get out of the overwhelming sadness I feel for her and the speechlessness of it. I need to start fundraising so there is never another child lose their eyes, lose their mobility, lose their mind. In Rachel’s honor I need to make a difference.
I changed the “About me” on the top right hand side of the blog to sound a bit more cheery. I don’t feel that cheery yet but I’m hoping to get there. I want to spend my “Kat time” (when I’m not working or with the children) on promoting awareness and fundraising for the www.BDSRA.org.
I start most of these paragraphs with I. I don’t know why.
I have talked about fundraising a few times since July but I don’t know where to get started. I haven’t gotten closer to figuring the “getting started” part in the months since July so I figure I better get started NOW or I might find that 2 years has passed and I’ve done nothing. And doing nothing is simply not an option.
Please email me at mrskatvon@gmail.com or comment if you have fundraising ideas that have worked for you (or someone you know) in the past. Also please contact me if you are willing and able to help. I definitely plan to have a raffle. I also plan to contact Rosie.
Thank you!!!
Read MoreWe’re home!
We went on our Make A Wish trip to Give Kids the World, Disney, Universal and Seaworld (all down in Florida). I still can’t get over how hot it is down there in the fall! It was stressful because the kids are young and Rachel is clearly not on the correct medication but we definitely had a lot of good moments and took some great pictures! I’m glad that Rachel was able to experience the things that she did while we have usable vision. Who knows how long she will have that for. We have seen another decline in her vision in the past couple of weeks and she is starting to feel things much more rather than look for / at them.
I posted some WONDERFUL pictures of our awesome Make A Wish trip on Rachel’s facebook page, feel free to look! We met Mickey, Minnie, held an alligator, took Rachel on lots of rollercoasters and met some wonderful volunteers and people at Give Kids the World!
Julie has been having lots of meltdowns that I would expect to see a few years ago. I think part of that is she is tired but certainly another part of it has to do with Rachel and how she flips out and is so demanding to manage and refocus. Julie is definitely attention seeking and it truthfully is not surprising.
Boys are pretty much the same wonderful / obnoxious little guys that they are. London is back to preschool tomorrow and Boston starts back at his 2 mornings a week preschool that he is so excited for! I’m happy for them. Boston was so excited to go to preschool the Thursday before we left for Florida so hopefully he will transition well on Tuesday.
This coming sunday is our double birthday party for the boys turning 3 and 4. Halloween theme! I want to make it really special for all 4 of the kiddos but not make it too huge. I think either way Rachel will be overwhelmed and I might have to have my Mom take her away early depending on how she does. Who knows, she could surprise us all, right?
I was really happy to see that the University of Iowa just published a report on 9/21/09 that they have found a way to get through the blood brain barrier and treat 2 kinds of lysosomal storage diseases (Batten Disease falls under this group). Here is a link to the article on the BDSRA website:
http://www.bdsra.org/docs/research/nm.2025.pdf
I am starting to plan a handful of fundraisers, some of which will take place this year and a few in the spring. I would so love to see some kind of treatment before it is too late for Rachel. We go to the University of Rochester next week.
http://dbb.urmc.rochester.edu/labs/pearce/bddcrc/clinical_eval.htm
This just doesn’t feel like it can possibly be happening.
Read MoreThe weekend is upon us
At 3pm today this family is going to build a bear. John and I were trying to decide upon how much it will cost us and we figured about $50 bucks a kid. I think our total will be $180 because I have a $10 gift card.
4 bears and an outfit for each bear = ??? What is your guess?
Answer: $200!!!!
Read MoreHappy 8th Birthday, Rachey
I hope you had a great day!!! We took her to this hotel on Friday night and out to dinner in the hotel restaurant and went on a long family walk (Bike walk) on Sunday. I don’t think my children could stuff another cupcake down their throats after last weekend.
The next birthday in our family is mine (8/24) and I’m turning 30!!!!
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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