Hi Maria and Marty – I appreciate so much your candid
advice and insight. I was prepared
to deal with the normal teenage hormonal issues but this is a lot more complex!
JJason and I have a really great
relationship and I have worked hard to keep the lines of communication open
with him. I am so glad that he is
done with tests for a couple of weeks. His anger about this disease is just
starting to boil to the surface and both his dad and I have talked with him
about paying attention to his feelings and making sure that he does not
redirect his frustration and anger toward someone else.Ogy talked with me at length today about
how angry he is.I was quiet and
let him talk without adding my own pain and anger. By the end he was joking again and
threatening to boycott the eye specialist that Jason has dubbed the “doctor
from hell.” I learned a lot
about his fears and I also shared with him that he needs to start taking a more
active role in his care. I
explained that it might make him feel more in control if he starts dealing with
some of the mundane parts of his health care. We all leave tomorrow to head up to
our little lake cabin in northern <st1:State w:st="on"><st1:place w:st="on">Wisconsin</st1:place></st1:State>.
It will be nice to be away from
doctors and tests and all of the other abnormal stuff that has become so
normal.Thank you again for your input
it is greatly appreciated! – Chris – Ogy’s very tired mom J<o:p></o:p>
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