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
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
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