RE: MAJOR VENt/ LONG

[Guest guest]

Dear Kim,

As I read your vent, tears streamed down my face. I wish I could give you

a big hug and sai " I understand " . I can relate way more than I want to to

every single feeling of frustration you have. I had a day like that

yesterday. I felt like crap from early in the morning missing my Samya so

much and made the mistake of watching her baby videos. There was so much

hope in our voices and we were so clueless and kept making excuses for the

little things that she had which made no sense. I was crying so much by

myself when suddenly the phone rings. It was Leanna's TSA calling to tell me

Leanna has stiff legs and cannot walk. I felt like a punch in my stomach.

She was having a neuoropathy episode and her last one was less than a month

ago. They are becoming more frequent and that is BAD news. I started crying

out to God, " just take me now

Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

MAJOR VENT

Hi friends,

I am tired of it all today. I'm tired of trying to figure out what it

wrong with Logan. Why is he the way he is,,and will he ever get

better,worse/ or stay the same ?

My mom is here,for her yearly visit. She only sees Logan once a year,,so i

feel she is a pretty accurate judge of ,whether Logan is getting

better/worse,staying the same. She told me yesterday that she thinks that

Logan is looking more and more like there is " something wrong " .She said

that he used to look a little different,some of the time,,but now it is

obvious. She thinks that he has something progressive. Now this is from the

Queen of Denial,,,so I am really taking this hard.She never admits that

Logan has a problem.

So,,here is what I am feeling. I feel like I can't handle this

anymore,,like this is going to make me go crazy,one of these days. I love

Logan so much,,and I just want to be able to worry about things like " Does

he have an ear infection " or " Has he learned all his math facts ? " I am

tired of trying to explain why he is so immature,and why he cries alot. I am

tired of ignorant people saying that they think he is just fine,,he is just

trying to get me to do things for him . I'm tired of having PT's,

OT's,neurologists,endocrinologists,rheumatologists,geneticists,developmental

pediatricians . I don't want a team of Dr's,,,,I want ONE

pediatrician,,,thats all. I don't want orthotics,,and strollers,or horse

therapy,,or ANY kind of therapy. I want baseball games,and sleep overs,,bike

riding,and roller skating. I'm tired or tricycles,and velcro

straps,,pull-ups and eye patches.I'm tired of always being on the lookout

for the next horrible thing that is about to happen. I'm tired of Ethan

being Logan's big brother,,when it should be the other way around. I'm tired

of nightlights,and Melatonin. I'm sick of going to endless testing,,blood

draws,and knowing what they mean,when they say "

myopathy,encephalopathy,mitochondrial diseases " I want to be ignorant. I

want to be clueless,,when they say degenerative,,I want to think that the

worse thing in the world is your child having an ear infection,or braces.

I just want the life I thought I would have. I'm really sorry about this

major vent,,but I am just so sick of it all.

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and

Ethan 5 and 100 % BOY

________________________________________________________________

Get your name as your email address.

Includes spam protection, 1GB storage, no ads and more

Only $1.99/ month - visit http://www.mysite.com/name today!

Please contact mito-owner with any problems or questions.