17 June 2011


The news is not great, but I don't really know what the news is.  Betty, Lula's pediatric nurse, called yesterday to say that the MRI was "abnormal".  Today we went to Bellevue to see her. The radiology report is a jumble of confusing terms, syndromes, congenital possibilities, etc.  but with no clarity or diagnosis.  It's being sent to other radiologists, the geneticist, and the neurologist for further analysis. Likely this will all lead to more tests.  

I was distraught, which seemed to confuse Betty a little, who said "none of this should come as a surprise to you".  I suppose it's not that it's unexpected, but that it closes the door on any hope for a normal life. I asked Betty, "how are we supposed to live with this?" and of course she had no answer.  She suggested we might get more nursing help, that I should find a support group, etc. I'm sure these things would help, I'm sure they will, but they won't change the fact that we can no longer expect things to get better. She will not outgrow this. 

On the upside I think I am becoming better at digesting bad news more quickly. Initially the tiniest setback with Lula would send me into a chasm for days.  Now I can absorb devastating news in about 24 hours.  I guess it's because really none of this changes our day to day lives for now. MRIs, pneumonias, whatever catastrophes happen to divebomb into our lives and fuck everything up now seem to come and go like the ebb and flow of a tide. There are still lunches to be made, walks to be strolled, therapy sessions to be had, naps to be taken. There are 8 feeds a day and night to keep her as healthy as we possibly can.  For now I will focus on that.

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