Kids with mito

[Guest guest]

I've been trying to decide whether or not to post this,well here goes.

As background: is not our biological child,she is the first

child of our second daughter.Her mother was 17 and unmarried when

was born. has always lived with us and we got custody of

her when she was 4 months old.Before her 3rd birthday we decided she

needed " real " parents,so for my Christmas present that year we

adopted her.Other than problems with speech and hearing ,as far as we

knew was a normal healthy child.

K-3rd grade she learned reading, spelling ,math and had pretty good

handwriting skills.Thats all gone now.What she can do today she may

not be able to do tomorrow.This year she had been learning

Braille,had gotten up to seven letters and the words they stood

for,then all of a sudden that to was gone.She had a few seizure like

episodes(dr said this not enough to affect memory)before losing this

skill.That was nearly 2 months ago,so for now we have stopped

Braille,to much stress.

does nothing independently.What vision does not intefere

with,balance or tremor does.Not to mention speech or word recall.

Our days are a guessing game.She does not remember names of things

but she will recall a detail.Square things could be hash browns or

pop tarts.Green stuff is okra or maybe broccoli.The girl was pregant

on the bus is the movie " A Walk in the Clouds " .Or the movie about the

dog, thats " Ghostbusters " .Your guess is as good as mine!

But I have hope that a cure for this disease will be found soon. I

know that research is being done.And I am praying.

I am 53 and it is possible that I will outlive but I also know

that if that happens when I get to Heaven she will be the first

person to SEE me and she will come RUNNING.Neither of which she can

do now.

Would I do this again knowing what I know now,IN A HEARTBEAT.

I have a friend who says " I don't know how you do it " Do What? Taking

care of a child who needs taken care of,or loving a child who needs

to be loved?

Bottom line, I think what it all boils down to is LOVE.

This is just my opinion and as you all will find out soon enough ,I

am full of opinions.

,Mom to

[Guest guest]

In a message dated 5/8/00 8:24:36 AM Pacific Daylight Time, buck@...

writes:

<< I have a friend who says " I don't know how you do it " Do What? Taking

care of a child who needs taken care of,or loving a child who needs

to be loved?

Bottom line, I think what it all boils down to is LOVE.

This is just my opinion and as you all will find out soon enough ,I

am full of opinions.

,Mom to >>

WONDERFULLY said . I am going to have to remember this for the next

person who says ... " they don't know how I do it "

Love,

(mom to , Kate and Karly-- seizures, hypotonia, visual impairment

and gross global delay)

[Guest guest]

In a message dated 5/8/00 8:24:36 AM Pacific Daylight Time, buck@...

writes:

<< Would I do this again knowing what I know now,IN A HEARTBEAT.

I have a friend who says " I don't know how you do it " Do What? Taking

care of a child who needs taken care of,or loving a child who needs

to be loved?

Bottom line, I think what it all boils down to is LOVE.

This is just my opinion and as you all will find out soon enough ,I

am full of opinions. >>

THANKS LINDA, COULDN'T HAVE SAID IT BETTER!! TOO BAD THOSE NEIGHBORS DON'T

READ THE LIST! :-)

ELLIE

" ...by living each day trying to accomplish something, not merely to exist! "

(borrowed from GFWC)

[Guest guest]

Dear :

My daughter is 4 (4-6-96) she has been symptomatic with mitochondrial disease

since birth. She is nonverbal, nonambulatory, GT feed, profound MR and she

knows NOTHING BUT PURE LOVE!!!!!!!!!!!!!!!!!!!!

Janelle McGuire

Mom to and 6 with ADHD