Still up in NH
Having a good time. Kids were definitely worn out tonight and less able to keep it together. I am hoping for a late start tomorrow and a half day at Storyland.
Then grief comes and slaps me in the face. It creeps up with no warning. And with immeasurable force.
Most people, I think, use the term grief to describe the range of emotions after something has happened, after someone has died. It’s really f-ed up to grieve your child, years before they will die. I get years of pure joy stolen from my family while my child is robbed of all of her abilities and then I will lose my child.
Grief sucks.
And I don’t believe in the stages of grief.
I think my list of what I do believe in is a hell of a lot shorter than the huge list of the things I don’t believe in.
(If you’ve read this far, thank you. Here are a few pictures of my babies in Santa’s Village today)
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.
They look so stinking happy. kate you are the best.
The photos are fabulous. You all look like you’re having the best time!!! I totally agree with John, You are the BEST!!!!
The photo with Santa is the perfect holiday card :0) Hugs to you all and enjoy your time in Storyland.
Miss ya all, Janet
thinking of you… enjoy your time… !! xo
Had dinner with John last night. He is missing you & the children. We all agree you are a great Mum & doing the very best you can for all your children. I know its hard work but we are very proud of you. Hugs to you all. Mum/Granny XX
u cut rachels hair i love it miss u guys see u later ttyl
Love the pics and AGREE with EVERYTHING posted before me!
Keep up the great work with the kiddos, and that hubby of yours…
looking forward to seeing you in a few weeks.
XOXO
There is totally a thing called anticipatory grief and I know where you are coming from. It was very hard to grieve while Nathan was still alive but I couldn’t help it. I tried my best not to let it show. It was those little things like him talking about what he would be when he grew up and shopping and not being able to buy him something on clearnace for next year. It is messed up. No one tells you how to live life while your child is dying. There are very few of us that have to do it, thank goodness. We chose the way we wanted to approach life and tried to stick to it (for us it was as normal as possible with a vew extra special things thrown in ). Having a goal helped. I know others looked at me and judged. How could I be partying it up at a GNO when my child was dying? How can I send him to school? Those are personal, family decisions and they are right because they are right for my family.
Anyway – I digress. Just wanting to say that I can empathize, as much is it is possible and given our different circumstances. You are not alone.