KeeponSmilin'

[Guest guest]

Just had a long phone conversation with a prominent and well-known

pediatric pulmonologist who specializes in CF care. Found out he is

married to my cousin (whom I don't know but my Grandmother does) and

my Grandmother has wanted me to contact him. Was hesitant for awhile

but then saw him on a TV show with one of his CF girls (who is

thriving) and read a lot of good things about him which made me want

to make contact. I wrote him a letter and he called me the minute he

received it. He talked to me for close to an hour and after talking

with him I just felt better about everything. I'm sure all of you

reached a point of being educated about this disease that you felt

like you had a little grip on what was going on. I haven't ever

reached that. Selfish as I am, I just wanted to know about Abby's

specific circumstances - Pa, what does it mean and all about it - and

I have learned but knowlege seemed so elusive and info always

ambiguous. Today I feel different. Yes, there are many unknowns and

much ambiguity(?) but the bottom line is that things are getting

better every day with CF. What used to be so scary just isn't

anymore. Yes it still wreaks havoc in lives but there are so many

more tools now and the understanding is so much deeper than it was

only a few years ago. I guess talking to this fine doctor increased

my level of confidence in them in general. He had great things to

say about CF parents who get out and work at it themselves. And not

in a patronizing way. While he cautioned about trying untested

things, he applauded us for being investigative and alert. He said

that was one of the biggest indicators of outcome in CF. The parents

who met it head on and jumped right in the fray - their kids always

did better. When you get down trodden and depressed you're child

could suffer physically so I guess the message is after you get done

moping as we all do at times, get up and smile and stretch and

get " all back up in it " again.

Joe