Some More hope

Today was a BIG day in many ways.
Below I have just written about our life changing experience at Melbourne Zoo but we also began with a visit to The Royal Childrens Hospital.

After a "check-up" with Amelia's paediatrician we had our first appointment with Genetics. The doctor caring for Amelia there spent time with us during our hospital visit in December. He also headed the meeting on January 6th when Ataxia Telengiectasia was confirmed.
Today he was lovely.

He mentioned that he had begun researching A-T and had spoken to Richard Gatti in America about Amelia. Now that he knows about Brashat he will also be speaking to them.

But during his explanation of the discussion with Richard he mentioned there being a number of trials over the next few years. As he spoke the element of HOPE started creeping back into my thinking. Whenever I talk to Krissy at Brashat there is alot of hope for a cure but I was starting to feel there was also hope coming from someone else very far away. That may be 2 more people than 10 weeks ago.

To stop my thoughts from taking over I asked him if my 1% feeling of hope may be valid.
His response : It would be ok to be reasonably optimistic.

Those words are now engraved on my brain.

He explained that  if they do find something to help A-T, they cannot get back what has already been lost, but there is a chance they may be able to stop the progression or at least delay it.

Now my thoughts were having a fireworks display in my head.
I didn't know how to react but I knew this comment of hope made me want to jump around like a lunatic.

If we were given the chance to keep Amelia, no matter how far the disease had progressed.....well you cannot possibly put that into words.

So when we go to our first A-T clinic here in Australin in 3 weeks time I am very interested to learn about what "walls have been smashed down" to get closer to that crystal ball cure in the middle.

Oh and I almost forgot.........
Tom has been given the all clear.
Tom DOES NOT have A-T !

A Magical Day

Today Amelia, Tom and I experienced a once in a lifetime chance to interact with majestic creatures normally reserved for the wild.
For me it was very emotional.
I have always had an undescribable love and admiration for any kind of animal.
Amelia and Tom have definately inherited this obsession and today we were able to share this unbelievable experience together.
Amelia was very cautious but Tom had no fear. I had a camera clicking the whole time.

For 90 minutes we were able to get up close to the most beautiful of creatures. Adrien Howard (Howie) was our guide and one of the kindest and friendliest people I have ever met.

We began with the giraffes.
You cannot comprehend the size of their head until you have it in your face.
We were inside their enclosure with them and the public were watching us.
The kids fed them carrots and leaves and the memory will stay with us forever.

I thought they may be the end of the experience and I was "buzzing" from what we had experienced, but no there was more !!!

Next we were taken to the seal enclosure.
The kids and I met Silver, a 23 year old seal, who showed us some tricks in a private viewing area. Then we were allowed to rub her belly and she gave each of us a kiss.

Next Howie said he needed to get a wheelbarrow of raw meat and we were going to help him feed the lions.
Tom looked up concerned and said "will they kill us?!!".

Watching the lions run into their cages to prepare for dinner was amazing. As Howie threw them their meat they would settle down to eat and we were watching them 1 metre away. To be so close to an animal known as a killer was humbling. They are absolutely stunning.

Today a special memory was created and it is something all three of us will treasure forever.
But as we were saying goodbye Howie said next time he will take us the elephants.
NEXT TIME ???!!!!!
Do you think he will mind if we make that tomorrow ???

I want to be a normal kid

Amelia was very upset, frustrated and angry at bedtime last night.
We could not understand the cause of the sadness until she hugged me and said very strongly "I just want to be a normal kid".

After letting Amelia release all of her thoughts last night we sat down this morning and wrote this together (she talked, I wrote):

An Open letter to Anyone and Everyone,

I want to be a normal kid.
Why is everyone treating me like a newborn baby when I am not ?
I just want to walk, I don't want to get in my wheelchair.
I don't want people helping me to sit. I can do it myself.
I don't want everyone treating me like a baby.
I want people to just stop helping me.
But I don't want to tell them. It might hurt their feelings.

I want mummy and me to tell everyone in my class i have A-T.
- I go wobbly sometimes.
- If you see me in the playground struggling then come and help me if you want to. You don't have to if you don't want to.
- It might take me a little while to think about what I am going to say.
- I just want to be a normal kid like you.

Thank you.

Amelia's Project

You cannot comprehend people's understanding or level of emotion of my personal situation until you are all in the same room together.

Last Wednesday I experienced an emotion charged feeling that I have never felt before. People arriving for a meeting about my family, my daughters illness.
I started uncontrollably shaking to see some people that I had not seen for 30 years. Some people who were parents at Amelia's new school. All there for one purpose. Us.

I knew how the last 8 weeks had affected my close friends. But people online? You do not realise how much they care until they show up at a meeting about helping you.

The feeling in the room was undescribable. A bond between strangers. An appreciation of life and how quickly it can be taken away.

I know people who care could not attend, but the feeling in this room, on this one night was powerful.

We made a "gift bag" for everyone who attended. It included a DVD about Amelia's Project. After the meeting I came home and watched it for the first time. It did not match the feeling in the room that night. So we changed the song. One that suited the emotion charged energy surrounding this very new group.
Yesterday the DVD went on Youtube and Facebook. It is being "shared" by friends and strangers.
Today the minutes from the meeting were sent out to those who requested them.

I think it is fantastic that this group are going to help our family give Amelia the most amazing life. I also draw comfort from knowing that this group is also committed to helping the only organisation in Australia trying to find a cure for this terrible disease.

Amelia's Project is going to go places they never thought possible. Who ever thought a group of women could be so incredibly powerful.

Thank you Jemimah Simpkin for initally establishing and organising such an amazing group. None of this would have occured if you had not started the ball rolling.
Next to Amelia, you are my Angel.
Gathering all of these kindred spirits into one room to show their committment to help my family.

At the next meeting I would like to show everyone what Amelia's Project has achieved so far, but so much of it is not material.
It is inside everyones heart..........

xxx

Our first A-T school year

After all of my negative writing recently, I finally have something positive to share with you all.

Today I had a meeting with the school about Amelia's year ahead.

With Amelia's "new" diagnosis I have been very worried about her attending school again.
In the final six months of last year she did want to attend and I was concerned with how "tired" she was constantly.
I now realise, through discussions with Amelia and a different understanding of her illness, that she could not keep up with the work in the classroom. It may have appeared that she was coping but inside her head it was a very different story.

Amelia has used the word "embarrassed" to me recently.
She was embarrassed that her writing was not like everyone elses.
She was embarrassed that she falls over all the time.
She was embarrassed because she did not feel like everyone else.

Over the holidays Amelia did not want to talk about school and she was definately not enthusiastic about going back.

Today I arrived at the meeting with Amelia's "thoughts". I had the ipad to show what may be another way of doing schoolwork. And I also arrived with my concerns for overextending her capabilities.

The three women in the room, (new teacher, old teacher and Intergration Aide supervisor), showed me very quickly their support in the overall well being of my child. It went beyond the "duty of care" obligation. It was a genuine concern to conserve Amelia's happiness. This is very unusual in any mainstream school. Special needs children are normally frowned upon and considered too difficult. But today I was reminded why I love this school so much. Majority of the teachers genuinely love the kids. They talk to them with respect. And they genuinely love the work that they do. ALL children, not just the ones with special needs.

What I was told at todays meeting.........
Amelia will not be going five days a week, but the days or half days to be kept home will be determined later.
The ipad will be used for school work.
An aide will visit at set times to assist Amelia with her school work.
The school will call me once she feels tired so that I can bring her home to rest.
P.E. will no longer be a subject she attends. We will go to physiotherapy at that time instead.
Amelia will never be alone. Everyone wants her to keep developing independence and having fun without adult eyes glaring at her, so they will hide!
Her wheelchair will be kept there Monday - Friday.
A "visiting teacher" will casually assess her academic progress weekly.
A psychologist will casually talk to her sometimes.
Mondays she will be taken out of class for cooking activities (normal for all funded children).
Tuesdays she will be taken out of class to attend a farm program on school grounds (normal for all funded children).

No more pressure.
No more struggling.

Everyone just wants her to be happy and have fun.
I saw that the school feels that way today and I came home very happy.

I told Amelia about the meeting and what was said.
Two hours later when I was saying goodnight to her I asked her if she was looking forward to going back to school on Friday.
"Yes" she answered excitedly with a big smile on her face.

Incredibly Frustrating

The life of my child is in the hands of scientists.

Ataxia Telangiectasia is on research lists all around the world.
Five "clinical trials"  are occuring in America alone in 2011.

When we all began researching this disease a few weeks ago, a report in The Oxford University Journals has me frustrated, still now.
I did not understand the medical jargon but it discussed the brain of an A-T child. It had pages written about how an A-T child's brain is different than everyone elses.
It was all there. Measurements, levels and the abnormalities and I found myself yelling at the computer "well if you know what is wrong then fix it". But they obviously can't.

Research groups around the world are working every day to try and find a cure for Ataxia Telangiectasia. Something the Americans describe as " take the worst of cerebral palsy, cistic fibrosis and muscular dystrophy and you have A-T". But they cannot even find something to help slow the process down let alone a cure.

Children are very ill and dying from this disease and THEY cannot find an answer.
So incredibly frustrating.

Recently I have found myself wondering about the scientists themselves.
Are they going down the correct pathway for an answer?
Is everyone working together so research is not overlapped?
Are they dedicated and motivated to find an answer?
Are they good people with our children first and foremost in their minds?

In the past seven days I have learnt a lot about the reality of our situation. How the future is more daunting than I have allowed myself to believe.
But it is not us that I am worried about.
Amelia's future is very frightening and we will have to try and support her the best we can.
To place the hope for a better future, to keep her alive, in someone elses hands is just as frightening.

But if they cannot find a cure for cancer, with so much more funding and research occuring, then I wonder if I am hoping for the impossible......

My Amelia

A child is very "fragile" in their way of thinking.

In our house at the moment we have 2 children that have been through a very difficult time.

I am very concious of what I say and do.

Amelia is definately not her normal self. But we have been through this two times before.
Once when she was three, going through the initial Cerebral Palsy diagnosis and another time when she was five. The latter one is freshest in all of our memories. An attempt at a lumbar puncture that went horribly wrong.
 If you can imagine 45 minutes of Amelia being held down, Scott being asked to help and me crawled up in a corner.
They never got that fluid out of her spine, but the reaction now from Amelia is the same as then.

Amelia is very emotional at the moment. She cries easily and gets angry very quickly.
Her "safe" world has been shattered, yet again.

Amelia's confidence has disappeared and her fears have increased.
I shouldn't be surprised.
In the last 7 weeks, she has been held down for numerous tests and heard many things from doctors, nurses and people around us.

When this has occured previously, the same reactions/behaviours last for about six weeks.
Hopefully with a lot of cuddles, reassurance and praise the "old" Amelia will come back soon.

At the moment Amelia sits with me silently. She will not play with her friends or talk confidently with others. I understand part of this is due to the recent "decline" in brain cells.

We need to accept what is happening to Amelia and the changes that are going to happen over the next few years, But at the moment..........

I just want my Amelia back.