Re: the book

[Guest guest]

Amen!

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

Robin

I am trying so hard to get to Dallas, I can't wait to meet you and talk! We

seem to be on the same mitolink.

See ya

mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also

healthy

[Guest guest]

this book idea is awesome--what do you think about including thoughts from siblings ?. I know two girls at this house who would be very interested in sharing feelings !.

mary

Middpowell@... wrote: , By the way, "Won't they grow out of it" is just one more reaason to educate the uneducated. Don't you just hate that. Especially when it comes from someone you consider an ally. My mother-in-law used to say "Robin, just let him be, stop going to the Doctors, Your just making him feel sick. AUGH..... We really need to write this book. Robin Please contact mito-owner with any problems or questions.

[Guest guest]

been thinking about titles-----anybody like,"MITO...WHAT?". maybe not !

cccccclark@... wrote: RobinThe title you don't look sick to me would not pertain to all mito kids. Colby has dysmorphic features, many midline defects, and is his growth is stunted. How about will they grow out of it? I am only kidding. Just something people use to ask me when he was little.See ya mom to Colby 12, COX IV, LCHAD, ADHD, Chad 14 healthy, Caleb 9 also healthy

[Guest guest]

Me again, watching what people are writing makes me think of the book Chicken

Soup for the Soul. Individual stories by people for others to read.

This book would be our Chicken Soup for our souls. Much needed.

N. mom to Leah

Middpowell@... wrote:

,

I think that's agreat idea.

Doing one book for the "people who don't get it " is what I want to do.

With individual stories/poems about are hard times, having to watch our

children suffer both medically and because of ignorance socially as well.

Each submission could have it's own author.

Robin

Please contact mito-owner

with any problems or questions.

[Guest guest]

Dr. Whiteman at Mayo once told me about a book that a mother of a

child with a cranio-facial deformaty put together. THe book included

sections from teachers, parents, doctors, social workers, the

children, and siblings. Each section talked about how these people

deal with the disorder and what they can do for it. He told me the

name of the publisher but I can't remember it off the top of my head

but I can ask when we see him in June. I once wrote a book for Isa

to share with classmates about herself and he had thought that they

might publish it but I never sent it to them.

Good luck,

Sharon Fisher

[Guest guest]

Thanks Sharon,

I'm sure you helped your daughter out alot by educating the class on her disease. I'm always amazed at what us parents do for our children. I think sharing our stories will be very educational for everyone.

Robin

[Guest guest]

Thanks Sharon,

I'm sure you helped your daughter out alot by educating the class on her disease. I'm always amazed at what us parents do for our children. I think sharing our stories will be very educational for everyone.

Robin