The stages of grief

Posted by Kat in Birthday, Kat, Life, Rachel

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!!!

Diagnosis

Posted by TeamRachel in Batten Disease, Blog, Medical, Rachel

This is a repost from Rachel’s Mom’s blog @ www.mrskatvon.com

Title: 847pm

When you get a call at nearly 9pm from the head of Neurology you have to kind of figure that it is going to be bad news.  Dr Darras called this evening to let me know that Rachel’s Juvenile Batten Disease test came back positive with the standard DNA presentation.

For those who are new to the road I have been traveling with Rachel, Batten Disease is 100% fatal.  There is no cure, no real treatment… from what I have read up on it within the last few weeks all they can do is treat the symptoms.  I will leave you to google “Juvenile Batten Disease” because while I am ok right now  (I was pretty sure that she had something neuro-degenerative) I will not let myself think of the future right now.

And to anyone who reads this please take heart in the fact that you can’t say the wrong thing to me.  I’d much rather you stick your foot into your mouth than ignore me because you couldn’t come up with the right words.

The next step:  MRI on Thursday which will give us a good baseline and comparison from her other MRI 16 months ago.

John will be home in a few minutes so I have to prepare myself to tell him…