Monday, March 25, 2019

update.

My kids are 15 and 17 now.  I can't believe that it is true, but here we are.  Edda's pancake breakfast was wonderful, a lively event.  We used Evite for the invitations for the first time and I think that decision resulted in an excellent turnout - we had about 100 people RSVP yes.  I think we had been on a downward trajectory in terms of attendance, so this well-attended party even during a low social year for both of us was a boost.  I'm so happy both sets of grandparents were able to attend.  My father especially had a great time - I think this type of party does lend itself to his personality.  We invited a lot of people who have been with Edda for a long time going back as far as we can, so it's nice to see old caregivers and therapists and teachers who haven't seen each other in a while hug each other and catch up.   Vince, I think for the first time, extended the invitation to his friends and a big handful of them came and pitched in with the pancake production.  Lauren made a beautiful, delicious cake which we served at the peak of the party (11:30 am) and was quickly devoured.  I, of course, ate nothing the whole time.  I almost never eat until everyone leaves and then help myself to two or three pancakes and a couple slices of bacon, a big slice of cake and then I put my feet up on the coffee table sitting next to Edda and sigh a long sigh.

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It's hard for me to think clearly these days, I don't have much time for myself.  When I do have time for myself, I do spend it scrolling through instagram or napping.  I find it hard to trust my own feelings these days because often I feel like my feelings are misleading me.  I often have negative or semi-disastrous feelings about situations or interactions and in order to not be consumed by them, I back up and try to reframe them or tell myself, it's really not that bad or it's really not the true story, but then what feelings do I rely upon to make judgement calls?  It's hard for me to say.  This is a long, winding story about how do I feel about Edda turning 15?  I'm both happy because she is happy and I'm still incredibly upset that this is happening to her.  Is it still happening?  Rett Syndrome - is it still happening?  Or is it in the past tense and it has already happened?  Then I feel badly because Edda is doing so well in many ways, so well that we manage to have a pretty predictable life. 

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