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.

How Sad

My family is beautiful.
Even though I suffer from anxiety, I have always been very grateful for fate placing me in the same spot as Scott.
We both have "issues" but we support each other and will be together forever.

My children are my world. Literally.
My full-time job is caring for my children.
I have a degree where I could be earning in excess of $70,000 per year, but my children mean so much more than that.

Today an article was published in a national newspaper. I have fielded calls from magazines, television and friends.
My children had to go and "play" with their grandparents so that I could deal with all the calls, emails and text messages.

My "guardian angels" helped spread the word about Ataxia Telangiectasia. Their messages, once again, helped me get through a very difficult day. So many people, it makes me cry.

But one very obvious comment that has stood out today..... "How Sad".

How Sad? Why?

Scott and I just had a discussion about this comment, which has appeared all day.

It is not sad to me. Scott disagrees.

I have the most amazing little girl that I am so very proud of.
To live with someone so beautiful, positive and happy is a pleasure.
I am honored.
Who cares if one life is long or short?
Amelia's life is going to be filled with love and happiness.
I am determined to make that happen.
It is now my destiny.

Look at our world.............
Ethiopia, Iraq and homeless people.

Amelia Grace Nicholds is going to have the most amazing life and I am going to have no regrets at the end.

I get to live with her smile and happiness everyday and I feel very special to be given that pleasure.

Confused......Part 2

My moment of insanity has passed ...... thank goodness.

Now i want to write about it, I see many people have commented on my confusion last night. I will read them later.......

Of course I am damn well proud !!!!!

I still have the mose beautiful little girl in the world (sorry to every one else with daughters!) and I am proud to show her to everyone.

I am proud to have married my soul mate. Through this and forever we will support each other.

I am proud to have a little boy with such charcter and enthusiasm for life.

I am proud of all the people on this page. What they have achieved through their compassion towards us has been magnificent to watch.

I am proud to see the publicity we will be give to Ataxia Telangiectasia.

And.......I am proud of me.

Now I will go and read those comments !

Confusion

I am confused.

I am hoping that by writing my thoughts I may gain some perspective and then be able to get some sleep tonight.

Since "Amelia's project" page became established there has been a very powerful energy generated from everyone on here. A group of people doing so much to help a cause.
My cause.
I just did not realise it would become publicised to a much broader community.
Our story. Our daughter.
To receive interest from such a large newspaper is unbelievable. But then I think back to when I was so overwhelmed by the support, generosity and help gained from this group and I understand their interest. Once again, all for one little girl.
People on this page have become friends with each other in the last few weeks and are supporting their new friends with their own struggles.

My confusion is that I am proud of an article being published. But what have I got to be proud about? It is being published because my daughter is dying and there is nothing I can do about it. My daughter is having an article written about her because she is very sick. So many emotions about a newspaper article and I am confused about how to feel.

Our life has recently gone back to "normal". Washing loads, shopping and cleaning the house are routine again. There are more cuddles and appreciation of everything but mostly life is like it was before.
Maybe this newspaper has reminded me that our life is not "normal" anymore.

After reading a draft of the article my feelings were happy. Daniel Hoy has written a very positive story about a beautiful little girl who has so much love around her. A major part of the article is about the Ataxia telangiectasia diagnosis. The emphasis of hope, kindness and empathy radiates through the written words.

Maybe I am proud of what our story has created here and you are all going to get the recognition you deserve.

But it is still about Amelia and how very sick she is............

Friends......

I have never had expectations of my friends.
 Everyone is different to the next person and to place "expectations" on them is unrealistic.
 We choose our friends based on an acceptance of who they are.
To appreciate the people and their own individual personalities around you gives you an appreciation of life.
I have actually always found "people" fascinating. I love learning about and understanding the different individuals around me.

Before children I embarked on a road of self discovery. After 3 years of counselling, the techniques and guidance that I learnt became ingrained.
To learn who you are, why you are and how you can improve is a very empowering lesson. It is something that will stay with me forever.

The topic of "friends" has always been very important to me. It is something I care about very deeply and has become so needed recently.
In the last few years I have been lucky enough to establish an amazing network of people around me. People from many different backgrounds and "walks of life".
Every single person has a different perspective on what life is and how we should tackle it.
By accepting these people for who they are I am fortunate enough to walk away with a small part of them inside of me. It helps to make me the person I am.

The response to me in the last few weeks from various people has been not unexpected or unreasonable.
Some cannot handle the pain or stress so they choose to make no contact. That is alright. The emotions in our current situation can be very painful at times.
Other people have chosen to make contact after not speaking to me for decades. That too, is alright. They have heard about our story and want to help.
And there are those who want to stand close and walk the pathway with you. They feel the pain and have the tears. These people I cannot find words to describe............

I am a complicated person. I am emotional. speak my mind and get anxious easily. All the different people and their personalities mentioned above, ( and so many more ) accept me for who I am. That is what friends do.

You cannot place expectations on people to react a certain way in a situation like this. It would make life very unrealistic.

An event has been organised for next month where so many people in my life are going to be in the same room. So many people who do not know anyone else, except for those they have conversed with, on facebook, on the subject of my daughter, Amelia. Everyone will be there for one purpose, to help us. So many kind souls in the one room. I have been extremely humbled by the organisation of this.

And as I contemplate an interview about this page tomorrow with the Herald-Sun, I feel so many emotions.
Sadness and pain that it is all about my little girl, but also warmth, love and support from so many people around me.

My latest lesson in self discovery is "Friendship". More powerful than I had ever imagined it to be.

Thankyou from the bottom of my heart.

Give and Take

My father brought me up to believe that you make your own way in life. You work and pay for the things you can afford. Do not expect money or handouts from other people because this is your life. Work for it.

In our current situation people around us are giving a lot. In my own personal discovery I have found that I am not good at taking. It is very hard and makes me feel guilty.

People who mean so much to us are giving money, gifts and food. But what means so much more is that they are giving their emotions and precious time. Two very personal and raw things, especially the emotions. I am not upset by people crying when they see us at the supermarket. I take that as a compliment. We have such a special person that has made such an impression on these people. There are many people who have changed the way they live their lives based on our story.

But I am now growing tired of arguing with people for giving so many different things to us. There is already so much to think about and make happen in our family. Every day I wake up and focus on what special memories we will create today. So I am going to move my focus away from feeling guilty for other peoples kindness and appreciate and give thanks for it instead.

Maybe in my own little positive way I will give something very special back. A thank you and a big smile from a little girl for making or contributing to a special memory in her wonderful life.......

What is life?

What is Life? Seriously.
We all have it but what does it mean?

If someone has had a "good life", what has made it good?

In our current situation I have had to change my mind to this question.

I have always wished for happiness. That belief has not changed.
I have always wished for a "long life". That belief has changed.

If you are happy, content and feel loved that is a "good life".
It does not matter if it is short or long. The content of your life is what makes it a "good life" or not.

Your own life is a very personal thing. The very basis of it does not involve anyone else even though many other people will be involved in it. Inside your body it is only you.

In my own life I have been confronted with a situation that has put me at a crossroad. At 36 years of age it is a situation I could never have imagined happening. It is definately something I could not try to imagine if not in my shoes right now. But the crossroad is quite simple. There are only 2 options. Positive or Negative and I had to choose one. My choice was positive.

When you are told your 7 year old daughter will have a short life and soon become totally dependent on you for everything, you realise there is not much time left to make a "good life". Yes, Amelia's life has been good up until now but then you think of the age-old question "What would you do if you had 24 hours to live".

The positive road I have chosen to take has handed me a very important task. I must make Amelia's life a good one. But I want to raise the bar and make it a special one that was worth it only being a short one.

Think back to your childhood. The freedom, responsibilty free and wonder of life. No mortgages, broken hearts or people dying. These things all make us what we are as adults but as children there is so much to enjoy and admire without this kind of worry.

Amelia's life is going to be special. I need to be positive otherwise I cannot complete the task I have been set.

I have been given the gift of life and I am going to make it a "good one"........

Hope.......

On January 6th 2011 I drove my two children to my parents house. "I love you both" I said with tears starting to well in my eyes. "Why did you say that mum?' Amelia asked concerned. "Because I just want you both to know how much I love you" I said. When I left them 15 minutes later the tears were streaming. Today our lives was going to change permanently forever, I could feel it.

Scott and I walked in to a meeting of 6 doctors and 1 social worker. We were then told what we knew they had already tried to prepare us for. Scott was silent and I couldn't stop talking and asking questions. The previous night I had formulated a list of questions (with a glass of wine!) which I wanted answers to. We were never going to have all of these experts in the same room again.  They answered my questions but no  response was positive.

The meeting finished an hour later and we left with the knowledge that we had a 7 year old daughter with Ataxia Telangiectasia or A-T.

All the power and energy our family and friends had given us through their support disappeared. We felt very alone. Our daughter had a disease that was eating away at her brain and they just told us there was nothing we could do about it.

Over the next few days my thinking ran in many directions, but I was surprised at how positive some of my thoughts were.
Here we had this genuinely caring and happy little girl. Us. How lucky we were to have created and loved such a beautiful person over the past 7 years. What an honour to have her in our lives. I feel exactly the same way about Tom but his personality and being are different. I am thankful for him in ways that are unique to him.

A new chapter had begun in our lives and I wanted to embrace it so that we could move on, but a major part of embracing that meant I wanted to fight this disease. No parent could sit back and know that their child was losing brain cells. Cells that can never be recovered. Any research, clinical trials or cures were going to happen in the future and be of absolutely no benefit to us. Amelia's brain cells are dying now. I wanted to try and stop that now. I realise that if doctors and scientists cannot find anything to help this disease how would I?  But it is still worth a try.

So my fellow facebook friends and I began our research. Hope was creeping back.
Oxidative stress contributes to brain cell death in A-T sufferers. Blueberries kill oxidative stress. One possible thing to help us.....maybe. Many other articles have been found and many suggestions have been made. It is all worth a try.

So as we embark on a new journey, I thank the universe that they gave Amelia to us. It is an honour to be her parents and have the pleasure of being reminded of what is important in life. Fun, love and happiness.

As a family we will fight this disease. We will learn more about it and hopefully delay the downward spiral that is inevitably in front of us.
But most importantly we will go back to being the happy family we always were. We will appreciate every single moment so much more and never take anything for granted ever again.

 

The Rollercoaster.......

I cannot sleep tonight.

Impossible to stop crying.

The rollercoaster of emotions is difficult. One minute you are positive and enjoying the moment, the next you are angry or sad.

By documenting my thoughts I somehow relieve my mind of the pain, so here goes........

When you become a parent the future is a secret garden. So much mystery, magic and wonder. When you have a child you believe they will have a life full of living, fun and learning. I feel that has all come to an end now for one of my children. She will have a life, but now we have to watch it slowly be taken away from her. We will endevour to make it magical while she is still able to appreciate it but we will also have to care for our beautiful little girl when she is unable to do anything except lie there.
We will not see her grow up and go to the pub, get married or have children.
All that will be left will be a big gaping hole in our precious family.

My days are currently spent wandering aimlessly around the house trying to remember what I used to do. My whole life has now changed and I do not know what I should be doing.

My father and brother have openly cried, no sobbed, in front of me. That really rips your heart out. My husband is still in shock and has not begun the grieving process yet. He is still in the typical male "I need to fix this" stage. Three grown males that adore, no, are obsessed with this little girl.

Amelia has no idea what has happened. She is still the happy, little girl she always was. Tom has been very difficult to be around. He is reacting the only way a four year old knows with the vibes he feels from the adults. But his reaction is anger and stubborness.

My "friendship group" has planned a New Years Eve party for the end of this week. About 16 of us. I have always been very proud of our group and know we will always stay together. But I do not think I can go. I know that they want to support us and are grieving too but I worry I will pull everyone down. I can see it already.....alcohol, countdown, crying.

I attempted socialising. Scott is much better at it than me. But I am not ready to hear about other peoples "happy families" while I feel like mine has disappeared.

How often do we see on the news and in the papers about children being ill or dying. How often do we find out that someone we know has lost a child in previous years. We always feel sad and maybe get emotional but then that moment passes and we move on. This moment will never move on for me. This is what my life is now.

At bedtime tonight Amelia gave Scott and I a big hug and kiss and said "I never want to grow up. I love you so much". Unfortunately this may come true and my secret garden will disappear......

My Angel.......

I thought my world had been turned upside down in 2006 when I was told Amelia had Cerebral Palsy. I had a 5 week old baby (Tom) and Amelia was only 3. Amelia had 3 months of tests to rule out other things and then it was confirmed.
It took me 2 years to accept her diagnosis and what the future meant for her.

I recently wrote an article for an education website on Amelia's progress in a mainstream school. My ability to write about her strengths was easy. Happy, easy going, caring, determined, intelligent, wicked sense of humour and a love of life.
When we decided to get the Royal Children's Hospital to "check" her on November 28th 2010, we had no idea what was about to happen to our little girls future..........

Amelia was admitted as an inpatient on December 6th for an MRI (Brain scan) , lumbar puncture (fluid from the spine where neurotransmitted messages pass) and various blood tests to try and find why she had gone "downhill" recently.
As I sat with my daughter while she went under anesthetic I felt excited that we may be able to find what was wrong with her and fix it.

That night, the doctor overseeing the investigation into Amelia, came in to examine Amelia. Something many doctors would do over the next 4 days. I mentioned the Cerebral palsy and she said "No. She does not have cerebral palsy. It is something to do with balance and we need to find what that is."
I was euphoric, estatic and elated. Balance?? Well that should be something easy to fix....Surely?

The next day the neurology department arrived. They were also examining Amelia when they spoke of the MRI results. Surprised, I asked," are they back?". I was then given a very casual explanation about how they were and there was a big difference compared to the MRI done back in 2006. The big difference? Part of the cerebellum (the base of the brain) had just disappeared. GONE.....My questions started flying and I discovered the cerebellum controls our balance, co-ordination and speech. The answer for the next question took 2 hours to sink in. This part of the brain was now gone forever and can never be rebuilt. But even more important, something was eating away at her brain and they did not know what it was or how to stop it.

Two hours later as I was bringing Amelia back from lunch the information sunk in. We walked faster because I did not want her to see me crumble. I handed her to Scott and made my way to the front entrance. By this stage tears were streaming. Some of the doctors saw me and I will never forget the look on their faces.....sympathy. They knew I knew.

At that moment I did not care who saw me. I stood out the front of one of the busiest hospitals in Melbourne and cried uncontrollably. My beautiful little girl was very sick.

I cried so much over the next 5 days.

Amelia had to be put through nerve tests, skin/muscle biopsy, extensive eye tests and I lost count of how many doctors came to examine her.

On Friday we were told there was a meeting at 3pm. As my questions started flying again, the purpose of the meeting became evident. They had found something, it was bad and it was untreatable. I lay on Amelia's bed while she happily played with Ashton and cried while I watched The Sound of Music.
In that meeting we learned it was highly suggestive that Amelia has Ataxia Telangiectasia. A disease that eats away at the brain and the immune system. Children generally need a wheelchair by 10 years of age and rarely survive into their twenties.

We were going to lose our gorgeous, happy little girl that is never mean to anyone and there was nothing we could do about it......

I had my meltdown in the following two days till I saw my two children looking at me. Slowly I picked myself up and changed my way of thinking.

There will be no regrets. She is an angel sent down from "somewhere" to teach a lot of people a very important lesson. Ask anyone that knows her and they will tell you what a beautiful child she is. We are going to make sure she has the best life full of magic, happiness and love, no matter how long that life is. We are going to cherish every moment we have with her and nurture and care for her when she is too ill to manage herself.


My friends, family and my facebook family got me through that week .As did the gorgeous family in our room who had a son that grew a close bond with Amelia.

Naively and unknowingly I dragged my facebook family through the whole process.
Your grieving process has been similar to ours.
Your support has been immeasurable.
Cooked meals, cleaning my house, phone calls where I just cried, people on our doorstep sobbing.......
Then I realised you all went through it with me. I posted every comment, every realisation. The way I was feeling was the way so many of you were feeling. In a way I apologise for that.
It was not fair on all of you.
We are so lucky to have to have so many people around us supporting us through this. And by writing about what seems like such a "bad dream" I hope to not only thank you all but also document a moment that has changed my life forever

Amelia is going to be spoilt from this moment on (and Tom as well!). We are going to offer our children the most amazing life full of fun. No regrets until that smile disappears.

Amanda
xxx