Tuesday
Its been the best part of 24 hours since I got the news that I had been half expecting. I told John last night and it went as well as could be expected. I feel really sick to my stomach today, I’m not sure about him. My oldest brother, who is out here from KC, MO visiting for a week spent the day working on our large living room (the front room for the people that have been inside this house). It looks really good and is nice to get that big-ass project nearly completed because I am sure having less on my plate will help me deal.
Still haven’t cried. I’ve spent the day working at home, keeping the kids from doing anything dangerous but not really doing much with them and I have also called and made lots of “next steps” and informed the people that needed to know. I’m pretty much on “Worst Case Autopilot” because I need to get the right things in place and can’t lose focus because she needs my focus right now. I will do everything in my power so that she never finds out that she has Batten Disease.
Thursday: MRI under sedation (which might or might not show brain atrophy)
Friday: I meet with Rachel’s “Commission of the Blind” case to get started with a ton of paperwork. (KID FREE)
Monday: I meet with the Chief of Developmental Medicine to talk about what medication (if any) would benefit her right now. I have, for quite some time, wanted an SSRI for her. I still want to go ahead with that and hopefully we can get that started. (KID FREE)
London still isn’t walking on his leg but has learned to do this “inch worm” thing around the house and is somewhat mobile. His knee is definitely still swollen.
Julie and Boston are doing well. Boston is consistently obnoxious and totally untrustworthy but I have finally learned that he was my first “typical 2yo.”
Life is so fucking unfair. She did nothing to deserve this.
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.
xoxoxoxo sweetie. You all are in our thoughts and prayers.
*hug* thinking of you
It relly is unfair Kat. ((hug))
I still don’t know how you folks are getting through the rest of your daily lives, but you’re clearly extremely strong partners and loving parents.
None of you did anything to deserve this.
No, life is definitely not fair and that seriously sucks. You are my hero Kate and I love you my friend!
You and your family are in my thoughts and prayers. If you need anything, please know that I am only a phone call away and will help you out in any way that I can. Even if it’s taking Rachel out for another exciting outing with her teacher that absolutely adores her and her amazing family.
So unfair. My thoughts and prayers are with you guys. I know you’ll keep strong for Rachel, but take care of you, too. ((hug))
Kate, I had absolutely no idea. You are such a strong strong woman and Rachel will reap the benefits of that, believe it. I’m thinking of all of you.
Char. xxxx
Oh Kate- I am so, so, ever so sorry. Even if you havent cried yet I am crying for you. I pray & wish with all my might that this doesnt have the expected outcome.
hug hug hug
Kate…we don’t know each other personally….but I know *of* you & your family via Mommaville….I have tried a few times to comment your posts & I haven’t been able to put into words how I feel….just know I care so much & I am doing enough crying for the both of us right now.
Kate..I am here for you. My heart is so heavy for you.. BUT, knowing you like I know you, you will do whatever you need to do for Rach and the others, to make life as “normal” as it can be. They are so very lucky to have you! Please let me know what I can do ((HUGS))
For now, you have others doing your crying for you. You and your family are in my thoughts and prayers.
One day at a time and one step at a time. *hugs*
Kat, I can’t even put into words. I am so sorry. I am keeping you all in my prayers.
our son, Patrick, suffered a severe brain trauma almost 2 years ago due to a rare form of the herpes virus, herpes 7. it attacked his brain and caused swelling that resulted him being a blind quadraplegic on a feeding tube. one day he was a healthy little boy and the next it was a new boy we brought home after 3 months living in the hospital. he regained his vision and is off the feeding tube but he had to have a baclofen pump installed to control spasms and he cannot walk,talk, or sit up without assistance. I do not know what his future holds but my greatest malady is now my greatest blessing. My prayers are with you and your family during this time…I wish I had some words of wisdom but everyday is a challenge and hopefully your strength (and you are stronger than you know although it doesn’t feel like it, does it?) will help…