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Showing posts from April, 2013

Now, Forever

I think that most of live in the "now." The "now" that is not only immediate, but also indefinite. I want things in the now to be good; feeling good in body and mind for me and my family, and I not only expect it, but assume without fail that this good will last forever. And then the same happens with the bad. When I or someone in the family is doing bad, it seems like it will now be the new norm that will last forever. How can I live with this stomach bug, I wail! It's impossible! I'm impatient because I believe the 'now" state of being is the one that will continue on. The irony is that I only pay attention to the now verses the all-the-time only when things are "bad." The reason for this thought process today, is that I am still (and probably forever, har har) trying to come to gripes with the reality of Leo's seizures. I do admit, however, that the seizures are just one of many categories of "bad" that parents (or rea

Walking On Air

So we have been walking down memory lane with some dear friends of ours the other day, one of which happens to be a doctor at Leo's hospital, remembering all the drama of Leo's birth and the following terminal prognosis. Our doc friend was not there at that time, almost three years ago, but she since then has seen Leo's file opened several times for ethics seminars, lectures, etc. It was fascinating for us to hear Leo's story from the clinical perspective. In some ways, we never knew it was that bad. Well, we knew it was, but ignorance of the fine details is bliss. We didn't even know about Hydrocephalus until we heard the word for the first time in the ultrasound room. For a while now, I have been feeling compassion for the doctors who were on Leo's case. I can't begin to fathom what it must be like, to make diagnosis like his. To be the decider and then the messenger of such news! A painful existence, an exhausting and traumatic experience for parents,