Tom and finding out

Hi Everyone.

A lot has happened recently.

I sit here and reflect on all that has occurred recently as Amelia and Tom wind down from busy days.

Tom and I had "the talk" recently.
It was not the one about "where babies come from" because that is still pending.
It was the one about the lifespan of children with Ataxia Telangiectasia.

The lifespan of his 11 year old sister.

My belief has always been to hold off for each child until they are mature enough and emotionally intelligent enough to cope with the information.
To let Tom and Amelia hold onto as much of their "innocence" and "love of life" until was necessary.

When Amelia was first diagnosed and we found out her probable lifespan, I watched all of the adults around me fall apart.
I watched them crumble under the pressure of looking at her, talking to her and just KNOWING.

I wanted to save Amelia and Tom from this glimpse of what life can be like and enjoy the life of being a child for as long as possible.

The ""innocent" life.

Recently Amelia asked questions (read previous blog) and discovered the truth.

Tom in his own naïve way, has gone about his days and participated in conversations like any 8 year old would.
Comments like "Ahhhhh Amelia you are going to die" when he farted/popped off/let one go (a regular side effect of diabetes) are normal for a child of this age, from any family.

BUT in our family, Amelia's face now turns white.
Scott and I asked him to stop saying things like that.
"But why? She is going to die" he almost always yells.

Last week he came home from school and told me about how a child talked about a "syndrome" in class that day. This child wanted to have a fundraising day to help children with "Guillain Barre Syndrome".
He spoke of the "rate these people die per day".
Tom was shocked.
"Can I ask to do a fundraising day for A-T?" he asked enthusiastically.

I saw my opportunity to talk to him about A-T.

"That is a great idea. I think you need to know a bit more about A-T first though. You do not know everything about it yet".

"Ok" he said, leading me into our loungeroom.
"Tell me".

I explained the basics of A-T again......what he already knew.
Then I explained that "A-T children tend to not live as long as other people".
"How long?" he asked.
"It is different for each child. It depends on how sick they get with things like colds.
It depends on many things.
Amelia is considered on of the healthier ones, so it is all different ages".

"So I am going to lose my sister? I will be all by myself?" he said.
Then he turned angry (I believe this is a natural reaction).
Tom began hitting me and saying "You have to have another child".
I explained that dad and I thought about that but decided we couldn''t.
The doctors said I can't too.

He went outside to play (he has told me before that he goes outside to kick a footy when he is stressed).

Tom kept coming back in and asking questions about our conversation.
The one that has stuck with me is when he came in and leant on the bench while I was preparing dinner....

"What is the average age that they die?''.
I answered "It is all different. All different ages".
"But what is the AVERAGE?" he said louder and firmly.
"In their 20''s" I said looking him straight in the eyes.

As he went back outside, I moved to a window so I could observe him.

He just stood there and cried.

Innocence gone.

xxx