Wednesday, March 07, 2018


Pretty sure like two people still read this blog.  Maybe not even that many.  I haven't written much in the past two years.  Instead I've driven back and forth to hundreds of therapy and doctor's appointments (a thousand?  maybe), collected a dozen more diagnoses for various kids, and spent some time (but never enough) in the Disney parks.  I recently made a goal to write again.  Not sure what that means or how often, but I'm starting today.

Last week, Zak and I sat down with a lawyer to discuss setting up a special needs trust for Mabel.   When we die (hopefully not anytime soon), Mabel can't directly inherit any money because then she won't qualify for either social security or Medicaid, so we have to make a plan for that.   I can honestly say that it's not something I ever pictured doing as a parent.  Sitting in a room, planning a future for a child that will never be able to live independently.  Normal people have to name a guardian in a will, but we have to discuss who will be a guardian for our adult child when we die eventually.   Will Storey be in a place where she can take on that responsibility?  Is that fair to do to a sibling?  So many heavy questions.  And thinking about hard future things that I usually try to avoid. 

Avoiding is my coping mechanism. 


PML said...

I still read your blog. I have always found it very interesting. In fact, I also read your reviews on goodreads. I much prefer reading blogs to social media; unfortunately, I think I am in the minority there.

shauntel said...

I'm glad you are back! I've missed reading your blog.
I can't imagine what you are going through with all those tough decisions.

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