Wednesday, 26 June 2013

The KING is coming !!!!

Good evening.

It would appear that we have a King staying here on Friday night.
The stress and anxiety coming from Amelia about the food we are going to eat and activities that I have to entertain the expected guest are constant.

The expected guest?
Amelia's soul mate Jackson!!!!

I cannot tell who is more excited though Amelia or our awesome school bus driver.
Bob picks Amelia up every morning and drops her home at the end of the school day.
He is a lot of fun and Amelia is slowly learning how to counteract his teasing.
When I asked his permission to bring Amelia AND Jackson home on Friday he was bouncing with excitement.
The teasing has already begun at school about Jackson needing lots of money to buy his ticket to get on Captain Bobby's bus.
This is a man who makes all of the children salute him before they board his bus!

Jackson is also wheelchair bound and attended a mainstream school before moving to the special school, just like Amelia. It is fascinating to watch them together and I look forward to enjoying time with both of them over the weekend.

This week we received Tom's grade 1 report for the half year. As expected his strengths are in maths, reading and writing. The beginning paragraph of the teachers notes started with "Tom is a very energetic child". That has to be the understatement of the year!!! Tonight we were fortunate to attend a meeting with his teacher where she could only give us positive comments about our son. So very, very proud of Tom and as I have said before, I am loving watching him grow up and show us the person that he is becoming.

Below I will include a link that I really hope you would consider watching. It is a video made of another family who has a child with A-T. I do not know them and have not heard of them in my network of A-T families worldwide. But every word and emotion is Scott and mine. The photos and faces could easily be replaced with Amelia's and ours and I would say it is our story. This video may help you understand what we think and feel and why I am so driven to write a book about our journey so far......

Finally the book.
The last 2 days have been spent writing about what could only be described as the worst days of my life. I needed to relive it to write about it. I am so drained emotionally and tired from writing about it but I hope that it is going to be worth it in the long run.

Here is another extract, something from yesterday.........

Three doctors from the neurology department arrived before Scott did. One sat on a chair directly facing Amelia. Two others stood either side of him. They were kind to Amelia. They began the usual exercises and added some new ones in. “Can your eyes please follow my finger Amelia. Can you touch my finger with your pointer finger” the doctor sitting down asked. Amelia giggled and thought it was great fun. The doctors were talking amongst themselves and one standing was taking notes. Suddenly something that was said in their private conversation caught my attention. All I had heard was “her MRI”. I immediately leant forward and said “Do you have the results from her MRI yesterday? What did it tell you?” I asked curiously. Very casually, with three other families in the room, the man sitting, looked at me and said “Part of her brain has disappeared when we compare it with the MRI in 2006”. My mind struggled to absorb everyone around us. I tried to let that information sink into the inner part of my brain, but it was too difficult to do. Part of her brain is gone? Just disappeared in 4 years? How does that happen? I was able to see one of “our doctors” at the nurse’s station outside our room. I walked over and looked at her my eyes begging for information. “If you lose brain cells, can you ever get them back?” I asked hoping for an answer different than what I knew. “No” was the only answer I received.


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