Family, Life, Race Update
We are all back to school doing full-day classes. Rachel has settled into 5th Grade, Julie is loving 2nd grade, London can’t wait to go to Kindergarten everyday and Boston is enjoying going to full-day Montessori. Boston has been acting up A LOT so I am trying to find ways to give him 1:1 time and so far I’ve been taking him on morning bike rides before school. This morning we went to the beach because we had a few minutes to spare and looked for shells.
On my walk home from Julie and London’s bus stop I was lamenting to myself that getting all 4 kids ready for full-day school in the morning (NOW) is easier than it was when it was only Rachel who was going to school. I can only imagine what the neighbors thought while Rachel screamed and cried and yelled and hit us while we got her dressed in the morning and that is pale in comparison to the intense sensory agony she was in while we brushed her hair, her teeth or put socks on her. I am so grateful for medication and how it has given us intermittent good times with her at home and substantial amounts of good time at school, and with Granny or one on one with someone.
Tomorrow we are running our annual jewelry table for Endless Summer (www.endlesssummerhull.com) with a twist because this year we are seeking runners, walkers, volunteers and business sponsors as we are raising money for Juvenile Batten Disease. The race planning is going very well and we are getting a lot of buzz around our town through all 3 schools, loads of residents and our customers. I am very excited about this race, c’mon October 23rd!
We have put Rachel’s name in the hat for the trial and are waiting to hear as to when she can start I have filled out all of the paperwork, caught her up on vaccinations and have gotten permission from Dr Sims (Rachel’s Neuro at Mass General) to be her local doctor.
Things we have planned? Outside of the upcoming road race I have two pretty giant things in store for my kids. A day or so after Christmas we are driving down to florida and renting a house with a pool and will spend our Winter break in the warmth. :)
Next summer? A few days after school lets out I am taking a complete cross country road trip with my cherubs going from Boston to California and back. We are also planning to drive north for a few days and spend time with James and his family (James is Rachel’s biological father). I know people have asked me why I would bother doing that as James has been out of her life (by his choice) for many years but really this isn’t about me or about him. This is about the kids. I think it will be great for my 4 children to meet their twin sisters. Technically they are only Rachel’s half sisters but my motto has always been “You can’t have enough people love your kid.” (Or in my case, kids). I have a lot of planning to do for that but the details are all on hold until after this road race.
London especially wants to dip his toes in the Pacific ocean, his life’s dream is to live in California and drive a minivan. I figure a good test drive through Cali could help him to see if this is something he wants to aspire to do or not. Yeah, he is barely 6 but he talks about it everyday.
Life is too short to waste it waiting for things to happen so you can move forward. Move forward, move things into place. Make things happen. Your life could be over tomorrow. Live without a lot of regrets. Live enthusiastically. IF we only know, truly, how many people in this world, in America, in your own town, maybe even on your street, who are fighting for their lives… Just thinking about it is very humbling to me.
- With love, Kat.
Read MoreGrand Mal (Seizure #3)
At around 8am today Rachel had another seizure. She was taking her pills with John (had swallowed 2 of 3) and she went into a trance and started turning her head almost in rhythm with the gears of a clock’s “seconds” hand. Couldn’t get her to reply and we laid her on the couch on her side. Convulsions lasted for minutes and I administered the diastat rectally.
I’m sure some people read this blog and think that sucks and on some level think that this is normal and expected. Not a big deal. But this is my healthy kid and this is only the second seizure we’ve seen at home.
This is scary. It makes my stomach hurt. She might be terminally ill but she is healthy on the outside and seizures are harder for me to witness than the night I got her official diagnosis.
She is passed out on the couch missing a fun day of green. So unfair.
Read MoreRare Disease Day!
Today is the official “Rare Disease Day” of the year – 2/28/2011.
As you already (probably know) Rachel has a very rare and fatal disease. The Batten Disease Disease Support and Research Organization funds thousands of dollars for research work into this disease.
Please consider donating to the BDSRA in Rachel’s honor. Thank you!
http://www.bdsra.org/donate.html
Read MoreWhat do people live for?
I took Rachel to her second appointment with her Pediatric Rheumatologist and he confirmed that she does have Lupus, also known as Systemic Lupus Erthymisomethingerother. How does a beautiful and innocent kid end up getting an early death sentence and Lupus? It’s total bullshit and rather than be angry this fine evening I would like to pose a question to those folks that still read my infrequently updated blog.
What do you live for?
Last year I spent many weeks living to cross off items on the bucket list, taking my kids to multiple states and experiencing all sorts of awesome things. Already this year I have driven my kids down to Florida and back and watched the miracle of Rachel and London learn how to swim. I have personally been living to make sure Rachel, Julie, London and Boston get to experience countless amazing days while Rachel can.
This year I want to continue this mission but maybe travel a little less (my new Jeep is not so good with gas mileage). Planning on sharpening our camping skills, maybe get a little sailboat. I’m looking for more adventuring ideas, things to enjoy, experience, to LIVE for.
So… What do you live for?
Took this picture of Rachel today. We clocked 100 miles with the Jeep’s top down today. It was 65 degrees in Massachusetts today!
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 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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