Friday Night
Couple of things.
1. If I could stop having the chorus from “Live like you were dying” by Tim Mcgraw playing over and over in my head I would really appreciate it.
2. Praying for a miracle won’t do shit. There is a 0% chance of survival once the disease has run its course. Rather than prayers send my family your thoughts. Knowing that you are thinking about Rachel makes me feel better. I guess its my anger that is making me sound so nasty in #2 and I apologize for that. Genuinely.
3. Everything doesn’t happen for a fucking reason.
4A. I’m tired. I can cry at the drop of a hat.
4B. The caseworker from the Mass Commission of the Blind was awesome today. Very friendly, intelligent and genuine. She saw me cry today. A lot.
5. Knowing that there is a cause for Rachel’s changes and behaviors has really helped give me patience to deal with her and to be close with her even when I have usually had a hard time feeling close. I have had a hard time with Rachel of 2009 and getting the diagnosis has made her easier to parent. I doubt that makes sense to anyone reading but it does to me.
6. Her MRI came back as normal. I’m very happy about this but I can’t help but wonder if the radiologists at childrens would be able to notice a different between the new MRI and the one from May 2008. I am giving the disk of the old results to Childrens on Monday when I meet with Dr Rappaport so hopefully we can have that question answered.
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.
All 5 points make perfect sense. No need to apologize for any of them either.
Whatever else I write here will be an understatement, Kat.
My heart is with Rachel, you and John. I’ll keep sending positive, peaceful vibes you guys ways.
Many, many :hugg :hugg
Please know that I am thinking of you, John, Rachel and the kids and praying, not for a miracle, but for patience, peace, and togetherness during this time.
I just wanted you to know that I havent stopped thinking about your family and your daughter since you posted on COMoms. I wish I could do more, just know that I am thinking of you guys always.
Keep writing out these thoughts. Even when they seem harsh, remember we all can take it. sling away.
I am glad that there has been something good that has come from this. For you and Rachel to draw closer together I am sure is such a blessing to her. Kids know when we back away. To be encircled with your love must feel wonderful to her.
I agree with the previous comments. Keep writing and don’t worry about what anyone else thinks — we are not walking in your shoes right now and whatever you are feeling right now (be it angry, bitter, etc) is within your rights. It is our place to give you love and support and not to judge.
You, John, Rachel and the whole family are in my thoughts for sure. I am hoping that thought the journey ahead will be long and arduous that you still find sweet moments of pure joy and bliss.
(((hug)))
This is the best place for your anger. No apologies necessary. I am glad the caseworker was good. As always lately I am thinking of you, Rachel and your whole family.
Oh Kate, you have every right to be angry and whatever you feel like saying, just say it. I have been thinking of you all for awhile now.
I’m just catching up on the blog. I agree with everyone on this thread. I love you for your honesty. You are an amazing mom and friend!!