Monday, February 27, 2012

Ehlers-Danlos Syndrome- vascular type 4

Saturday breakfast with my vintage store owner friend was great. We spent some time in my basement pondering the possibilities of the space. He had some amazing ideas that I will definitely be using.


I went to a dinner party Saturday night, and SuperBowl Woman was there. We had another great time together, and even party hopped to another place across town after dinner.  The more time spent with her, the better I feel about keeping our friendship on a close level. Our “stuff” would not fit well together in a relationship, and we both know it.


I missed my regular Sunday ecstatic dance; I was helping a friend move. Unfortunately I hurt my back lifting boxes of books up from a basement. I spent the remainder of the day in bed. But on the bright side, she is a massage therapist and has offered me a message tonight after work.


I’ve had several phone conversations with my in-laws over the weekend. We have plans to meet next Saturday at the cemetery that my wife’s biological father is buried. He died at 40 years old from the same genetic disease my wife died from.

We plan on creating some type of permanent memorial with her ashes. Her mother, step-father, and brother will all be meeting the funeral director with me.  I will be bringing the ashes down with me. I don’t really want to bring any back.

Her ashes are split in two boxes. Most of the ashes are in a nice wooden box urn, the remaining are in an easily opened cardboard box. I really don’t want the full urn back. I have told my in-laws to think about the urn, and where they might like it to end up. I suggested perhaps just keeping the nameplate side of the urn.

I don’t want to move the urn into the new house.

Guilt. Sadness. Fear. Longing…..empty.


  1. Is the guilt because you are working on your life without your late wife? Guilt seems normal, but I'm just wondering about its source.

    Did your wife have any sibs with the same father?

    The Good Luck Duck

  2. letting go ... tough times...

    I don't envy you ... but let the guilt go ... she would have died with or without you... and what a lucky woman she was to have had you until she did die...

  3. Ditto what Carolyn said. You were incredibly fortunate to have one another....have never heard of eds. You sent this nurse to google university. It's been quite a lesson. -t.