Letter #26: January 7, 2011

January 7, 2011
2:45 pm
Dr Farabee: "It's positive.  Your daughter has Rett syndrome"

LOSS

I always thought going through the stages of loss was only when someone died.  It’s not true.  I have been going through the stages of loss.  I haven’t lost my child, but lost the idea of a perfect child.  I used to think hearing “loss of a perfect child” was dumb b/c no one is perfect.  But I have realized that it’s means that you have all these high hopes for your child and want the same opportunities for them that every other child will.  And the day you start to realize that your child will not have those things, you have lost your perfect child. 

Denial

Anger

Bargaining

Depression

Acceptance

I think you go through these stages for different amounts of time and might flip back and forth to stages.

Denial: November 23, 2010.

This is the date when we went to the physiatrist’s office and first heard of “Rett Syndrome.”  I kept thinking that my child couldn’t have this b/c she doesn’t fit into all the symptoms of it and has seems to be making progress.  Painfully slow progress, but progress nonetheless. 

Anger:

I go through this all the time.  As a matter of fact, I have been going through this for the past 15 months when I started to realize how behind Cameron was.  It was anger at myself, thinking I wasn’t doing something right, that I was a bad mom, that she would have been better off if I went back to work and she was in daycare.  Why couldn’t I get my child to move?  Then, for short amount of time during the day, I would get angry at her.  I know it’s terrible, but I just couldn’t understand why she was different and so far behind.  Then, I’d get even more angry at myself for thinking and feeling that toward my little innocent angel. 

Why me?  Why Billy?  Why Cameron?  What did we do wrong?  Am I paying for sins from the past?  There are much worse people than me, why are we being punished?  Why would “God” do this to anyone?  It’s not fair!  Why do I have a child who is eternally 6 months old?  Everyone else has independence and I have none.  All other children can play by themselves and occupy themselves, while I am constantly on the floor entertaining my child, feeding my child, carrying my child, guessing what she wants. 

Bargaining:

God, I’d do anything for my child to be healthy and normal.  I really would.