Relapse

[Guest guest]

My little Amber was diagnosed with Leigh's disease when she was just

over a year. She was unable to cry, laugh, smile, crawl, or even

drink from a bottle. At the time she was diagnosed, the doctors told

us to take her home, make her comfortable and wait for her to die.

They said she would not make it through her toddler years. As

parents, we refused to give up that easily and where able to give her

the support and love she needed. To the doctors amazement, Amber was

able to overcome her inital episode and was able to do more and more

things. unlike some of the children with this unfortunate disease,

she has no problem eating. In fact, I wish I could have half her

appetite. Needless to say, the past 9 years have been wonderful.

Other then her not walking and talking, I sometimes forget she's sick

at all - and seeing her smile warms my heart so much! she has a

smile that could light up a room! However lately, I've noticed a

huge change and my reality check set in . . .

Amber got a real bad cold a few months ago and she has not been the

same since. She very rarely smiles now, she no longer wants to play

with her toys, all she wants to do is sleep, and her normal hand

tremors have now turned into whole body tremors. I am taking her to

the doctor but in my heart of hearts - I know this is more then just

a cold she hasn't quite gotten over. My reality has set in and I

don't know what to do. I see the pain and the agony that this

disease has caused so many parents and my heart truly goes out to

them. Even though I know she will succumb to this terrible disease,

my mind is telling me otherwise. How can I prepare myself for this?

How can I except the fact that she isn't healthy and that she DOES

has disease that isn't currable. My husband and I talk alot about

the disease but we never talk about the inevitable other then to say

we don't know what we would do. I'm a working Mom - I work because I

have to so I'm not able to be with her all the time and that makes me

feel so guilty. We aren't getting any sort of financial assistance

or anything, and we need 2 incomes in order to support our household.

I just worry about all the time I've spent away from here . . . Time

is something I can never get back and I'm scared that I've wasted the

time not being with her. My mind is just spinning and spinning with

questions and I feel like I'm losing it. I see these emails where

these poor parents have to bury their children because of this

stupid, stupid disease and your emails to them are an inspiration

that life can go on. I hope I can someday be accepting of this but

I'm not ready to say good-bye to me baby!