Can't keep up anymore

[Guest guest]

Hi Crew,

There is so much going on in my family that it is a joke for me to try to keep up with the Crew mail any longer. I jump in about once every 3 or 4 weeks and start reading backwards-but I'm missing a lot and I'm not being much support for you guys these days, though you so often have been for me.

I'm not quitting the Crew, but I'm going to go to "read only" status, with the knowledge that I will probably be able to read very rarely. You can still reach me privately at hmschoolma@... and hopefully that will be the case for a long time to come.

All three of my NF2ers are looking at probable surgeries right now. Fred needs a spinal tumor removed that is causing him a lot of pain and keeping him (and me) up at night. He also probably needs another meningioma out. It's in the back of his head and is believed to be impacting the vision in his good eye. He has lost almost a full 25% of the visual field in that eye-the lower right inside quadrant. Never would have noticed it if he hadn't been going to the eye doctor because of post-cataract surgery eye pressure problems. A "random" test found the problem. He is going to have to go on full disability-which he Hates doing. His pain and his stamina and the other problems have finally made it impossible for him to work and maintain his health at the level he is at right now.

I have started back working as a freelance interpreter but will probably need something with benefits before long. Also, freelance work isn't always steady and I need something with a dependable income. Fred will receive disability pay so we will be OK financially, but might have to move if I can't make up the difference between the disability pay and his previous pay.

has a minor surgery planned and is still balancing on the head of that pin at the point of deciding between total deafness in her only functioning ear vs trying to save the facial function while she can. You all know better than I do how hard that decision is to make. To agree to go into a surgery knowing you will come out deaf is just about incomprehensible to me, and for her to have that kind of decision hanging over her head at 18 melts my heart. I can't fix it. I can just hug her and kiss her and hold her hand. I don't even know how to pray. None of the choices are good ones here-so typical with NF2.

's voice has been strained for at least 4 months. I thought at first maybe it was just because he's 13 and his voice is changing. I realize now that isn't why it's messed up. My guess is this is either a VS problem or a tumor in his throat. Whatever it is, something needs to be done or this kid isn't going to be able to talk at all.

is physically healthy, but she's so upset at the prospect of Fred's upcoming surgery that she is falling apart on me. The fact that I'm not home as much now isn't helping her a bit. And falling apart is a big deal. She's a tough, tough girl.

I want you all to know that my family and I appreciate your prayers and have appreciated all the support you have given us the last several years. We probably won't be able to attend the NF2 Gallaudet event but we live an hour away and will try to get in to visit with everyone who does attend it. I hope a lot of you will be able to go to it. If you have never been to D.C. it's worth it just to get to do the tourist bit.

I'll be around as time allows, but that isn't very much right now.

You guys remember to take care of those eyes post-op or I'll come after every one of you! Keep 'em lubricated and SEE YOUR EYE DOCS at least once a year if not more!!!!

Thanks Crew and may God bless each and every one of you.

Love,

...Donna

[Guest guest]

Donna

My prayers go to your entire family. They are lucky to have you to take care of them. I wish you well...

Olivia