Wednesday, March 13, 2013

More questions than answers

I want to ask you, as clearly as I can, to bear with patience all that is unresolved in your heart, and try to love the questions themselves, as if they were rooms yet to enter or books written in a foreign language. Don't dig for answers that can't be given you yet: you cannot live them now. For everything must be lived. Live the questions now, perhaps then, someday, you will gradually, without noticing, live into the answer.
--Rainer Maria Rilke, Letters to a Young Poet

We completed our EEG testing for Soren yesterday, a day early. He did great, considering how scary and invasive the whole procedure was for him. I wonder if he comprehended what we were doing and why. The idea that he didn't makes me feel so sad and guilty. At one point during the removal of the probes I had to get on the hospital bed and pin his legs down with my own body (while Erik and my sister held his other limbs and his head). I can't imagine his anxiety.

The test is inconclusive--there was no evidence of the disorder we thought he might have, the disorder that would explain so much. There were signs of EEG abnormality, however, so Soren is at elevated risk of seizure (which we've never seen evidence of). 

Erik and I are still processing the meaning of all of this and starting to approach and research next steps, which may include genetic testing. I'm overwhelmed and confused about how to proceed. We're kind of on our own on this path; since it doesn't seem to be a neurological problem, the neurologist is just referring us to other types of specialists. 

I'm also sifting through the whole idea of more tests: Whom do they benefit, really? Are there treatments to be found in these tests or just names of disorders? Does testing's value outweigh the trauma that's caused to Soren when we agree to have him prodded so much?

Today, I'm just upset that we don't have answers. Selfishly upset. Answers would have ordered my world a bit. Maybe they would have helped me predict Soren's future a bit--I guess I mean my future. I'm not so good at this living the questions stuff.


  1. I've always liked that quote. But actually to live it like you and Erik and Soren are makes the printed words seem so trivial for mere readers.

  2. Jenny, thank you so much for sharing about this candidly. My heart goes out to you, Erik, and your beautiful boy as you wade through all of the options and unknowns.



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