So not this weekend but next weekend I go to Washington DC. I'm to a forum for those with NF. Neurofibromatosis. Those of you who know me, know that I have this. Those of you who REALLY know me, know that I have never met another person who has it also. I am, in a word, terrified. I have no idea what to expect. My case is not all that apparent to the eye. Ok, to the untrained eye anyway. I'm a little worried that the folks there will think I'm something of an impostor. Mama Bird thinks that I might be something of a ray of hope for some of the parents there. I think that Mama Bird might be a bit off her rocker when it comes to this one. I don't have a lot of the physical characteristics of nf, at least not where they are easily seen. I have all sorts of other issues. If I were a new parent of a child with nf, I would be horribly frightened of me.
Mama Bird and I are taking the train out. This ought to be interesting. This will be the first time she and I have taken a train ride that lasts longer than 5 hours. It will also be the first time that I will have boarded a train so late in the evening. At least in the states.
I'm a little at a loss here. I don't know what to expect. I know that I may find out all sorts of information about clinical trials, and that may be a fantastic boon. Yes, I am trying to talk myself in to this. Up to this, whatever.
No, I don't have a recipe today. I'm a bit too scattered for that right now.
--Little Bird is a nervous wreck
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3 comments:
Good luck, Avis! You're going to shine
best of luck
I would tell you not to worry; but I have never told that to anyone, nor had it said to me, and had it do a lick of good. All that I can say is that I believe that you will be fine. You will acquire information and with that you will have power over your future. Hopes gain strength with facts. Become stronger.
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