tag:blogger.com,1999:blog-48505945623780158062024-03-14T21:01:23.251+11:00Amelia's ProjectAmelia is a beautiful ten year old who has been diagnosed with Ataxia Telangiectasia.Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.comBlogger357125tag:blogger.com,1999:blog-4850594562378015806.post-81772392287922333012015-05-26T17:11:00.001+10:002015-05-26T17:11:30.608+10:00Tom and finding outHi Everyone.<br />
<br />
A lot has happened recently.<br />
<br />
I sit here and reflect on all that has occurred recently as Amelia and Tom wind down from busy days.<br />
<br />
Tom and I had "the talk" recently.<br />
It was not the one about "where babies come from" because that is still pending.<br />
It was the one about the lifespan of children with Ataxia Telangiectasia.<br />
<br />
The lifespan of his 11 year old sister.<br />
<br />
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.<br />
To let Tom and Amelia hold onto as much of their "innocence" and "love of life" until was necessary.<br />
<br />
When Amelia was first diagnosed and we found out her probable lifespan, I watched all of the adults around me fall apart.<br />
I watched them crumble under the pressure of looking at her, talking to her and just KNOWING.<br />
<br />
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.<br />
<br />
The ""innocent" life.<br />
<br />
Recently Amelia asked questions (read previous blog) and discovered the truth.<br />
<br />
Tom in his own naïve way, has gone about his days and participated in conversations like any 8 year old would.<br />
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.<br />
<br />
BUT in our family, Amelia's face now turns white.<br />
Scott and I asked him to stop saying things like that.<br />
"But why? She is going to die" he almost always yells.<br />
<br />
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".<br />
He spoke of the "rate these people die per day".<br />
Tom was shocked.<br />
"Can I ask to do a fundraising day for A-T?" he asked enthusiastically.<br />
<br />
I saw my opportunity to talk to him about A-T.<br />
<br />
"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".<br />
<br />
"Ok" he said, leading me into our loungeroom. <br />
"Tell me".<br />
<br />
I explained the basics of A-T again......what he already knew.<br />
Then I explained that "A-T children tend to not live as long as other people".<br />
"How long?" he asked.<br />
"It is different for each child. It depends on how sick they get with things like colds. <br />
It depends on many things.<br />
Amelia is considered on of the healthier ones, so it is all different ages".<br />
<br />
"So I am going to lose my sister? I will be all by myself?" he said.<br />
Then he turned angry (I believe this is a natural reaction).<br />
Tom began hitting me and saying "You have to have another child".<br />
I explained that dad and I thought about that but decided we couldn''t. <br />
The doctors said I can't too.<br />
<br />
He went outside to play (he has told me before that he goes outside to kick a footy when he is stressed).<br />
<br />
Tom kept coming back in and asking questions about our conversation.<br />
The one that has stuck with me is when he came in and leant on the bench while I was preparing dinner....<br />
<br />
"What is the average age that they die?''.<br />
I answered "It is all different. All different ages".<br />
"But what is the AVERAGE?" he said louder and firmly.<br />
"In their 20''s" I said looking him straight in the eyes.<br />
<br />
As he went back outside, I moved to a window so I could observe him.<br />
<br />
He just stood there and cried.<br />
<br />
Innocence gone.<br />
<br />
xxx<br />
<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-2062558403044743442015-04-30T21:03:00.001+10:002015-04-30T21:03:18.100+10:00How did you know?Hmmmmmmm.<br />
Sitting here not knowing where to begin.<br />
<br />
Today as I walked up our driveway to collect Amelia from her school bus (we are fortunate it literally comes to our door) I checked the mailbox.<br />
I always check the mailbox and it is always bills!<br />
<br />
Today there was a letter with a sticker on the back naming a photography company.<br />
I know this company due to the donation they gave us for our Amelia's Project night years ago to help send us to Disneyland.<br />
I also know that we could never afford to get one of their amazing photography packages.<br />
<br />
Inside was a card and a voucher.<br />
The card explained that I had been "gifted" a photography session.<br />
It was from girls in my High School year level <br />
(I finished 23 years ago!).<br />
It then listed 40 or so names of girls I used to attend school with.<br />
<br />
Gobsmacked.<br />
<br />
"Are you ok mummy?" Amelia asked.<br />
I only then realised she was off the bus.<br />
"I don't know" I answered. "I don't know what to say".<br />
<br />
I looked at the names.<br />
<br />
Some I had not seen since school.<br />
Some I had never had the chance to even speak to at school.<br />
<br />
It said they had all contributed.<br />
<br />
Why?<br />
Why now?<br />
How did they know?<br />
<br />
I ask the final question because life has been a bit of on eternal battle in the last 12 months.<br />
After finishing work, I became very depressed at how I had failed.<br />
With the help of "time", letting it run it's course, friends and family....<br />
I was able to beat it.<br />
That depression is constantly sitting in the wings, waiting for a flat point, waiting to pounce.<br />
<br />
Stress levels are always rising and can sometimes get out of control.<br />
<br />
Why?<br />
<br />
Because I saw our life differently when I was working.<br />
I saw an outside view by spending time away.<br />
I broke the mould of routine that I had created by developing the mindset of giving Amelia an "Amazing Life".<br />
<br />
I returned a different person.<br />
<br />
It is a person I do not like because she does not handle "life" like she used to.<br />
She crumbles easily and battles with the life that she has been handed.<br />
<br />
Most importantly..... Because she no longer gets a break.<br />
<br />
My dad used to always have the kids on a regular basis, but he has now injured his back, hip and knee.<br />
He can no longer "walk" Amelia to the toilet or to bed.<br />
<br />
It was something I obviously took for granted because I am really feeling it now.<br />
<br />
Scott and I give each other a break but it is hard when he works full time now.<br />
<br />
I am tired.<br />
<br />
I have been fortunate that a beautiful person from Amelia's school likes to have Amelia sometimes, but she has 4 kids.<br />
She keeps asking to have her and I just find it hard to relax knowing that her life is already "full on".<br />
<br />
I have been able to find an organisation that will "pay" her when she has Amelia.<br />
This makes me feel MUCH better.<br />
<br />
Amelia is only comfortable going to their house now.<br />
Due to the brain changes, the anxiety has increased.<br />
<br />
We cannot send her to "fun" disability camps or respite houses anymore.<br />
We always end up having to go and get her.<br />
And that is FINE.<br />
I NEVER want her to feel sad, scared or lonely in these places.<br />
Her life IS to be filled with happiness.<br />
That is my mission.<br />
<br />
But it is hard.<br />
<br />
I am calling Amelia the CAN child lately....<br />
Can I<br />
Can WE<br />
Can YOU<br />
<br />
If I do not do it immediately, she asks every 30 minutes!!!!!<br />
<br />
Can we have meatballs for tea?<br />
Can you buy me chocolate milk?<br />
Can I have a camera?<br />
<br />
NOW !!!!!!!<br />
<br />
I am tired.<br />
I am stressed.<br />
I am keeping depression locked in a cupboard in a far distant room.<br />
<br />
This voucher and this card today has really rocked me.<br />
It is not the monetary value so much.<br />
<br />
It is the reminder to create another long lasting, visual memory.<br />
It is a reminder of what I will have to look at in the future.<br />
It is a reminder of my original motto.......<br />
"No regrets at the end".<br />
<br />
It is the people that thought of me and my family.<br />
<br />
One girl messaged everyone to contribute to US.<br />
<br />
Thank you to each and every one of you.<br />
<br />
Thank you Nicole, you must be one of our Guardian Angels.<br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-83850152827776880622015-04-19T22:45:00.000+10:002015-04-19T22:45:31.109+10:00Hello !!!Good evening everyone.<br />
<br />
Hard to believe that we are already so far into 2015.<br />
Time is passing by way too quickly.<br />
I have just returned from a relaxing weekend in the city (forced upon me by Scott!) and woke up yesterday morning with such a start when I remembered something.<br />
When I should have been enjoying a sleep in, I was rattled by the thought that it is Scott's birthday in a few days.<br />
It NEVER crossed my mind that it was fast approaching !!!<br />
I probably would have sent him off to work and wished him a nice day !!<br />
<br />
We have a new addition to our family.<br />
He is very naughty, active, boisterous and incredibly happy.<br />
His name is Buddy.<br />
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<a href="http://3.bp.blogspot.com/-aN0Jzc3y8D0/VTOR8LnM0vI/AAAAAAAABTk/hc78VUpzlgM/s1600/285.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-aN0Jzc3y8D0/VTOR8LnM0vI/AAAAAAAABTk/hc78VUpzlgM/s1600/285.JPG" height="320" width="240" /></a></div>
8 weeks old in December.<br />
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<a href="http://2.bp.blogspot.com/-n5sWRWuQEBE/VTOSRcVfdqI/AAAAAAAABTs/a6lO4mJJZI4/s1600/366.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-n5sWRWuQEBE/VTOSRcVfdqI/AAAAAAAABTs/a6lO4mJJZI4/s1600/366.JPG" height="320" width="240" /></a></div>
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In February.</div>
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Tom named him.</div>
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It was his turn to name a pet.</div>
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He wanted Gregory (from Minecraft), but I had eliminate it from the list.</div>
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I could not see myself standing at the back door calling out to "Greg".</div>
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Scott did not support me on this and only agreed with Tom it was a great name, because he thought it was "hilarious".</div>
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Amelia was given the honour recently of being a bridesmaid for my cousin.</div>
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I had to drop her off to make up, hair etc at 10am and not see her again till the ceremony at 4:30pm.</div>
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She had the most magical day and we were all honoured to be part of such a beautiful ceremony.</div>
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<a href="http://3.bp.blogspot.com/-EK9bhPzSXLs/VTOUW3MhO1I/AAAAAAAABT4/knnoQi-nbGg/s1600/11164818_10152863941432362_5369483606102822345_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-EK9bhPzSXLs/VTOUW3MhO1I/AAAAAAAABT4/knnoQi-nbGg/s1600/11164818_10152863941432362_5369483606102822345_n.jpg" height="320" width="207" /></a></div>
Amelia looked stunning.<br />
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<a href="http://2.bp.blogspot.com/-scetYl8bEy4/VTOUu36zTRI/AAAAAAAABUA/yZ-2aU7MsZM/s1600/11150958_10206327831745268_8488612708874370993_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-scetYl8bEy4/VTOUu36zTRI/AAAAAAAABUA/yZ-2aU7MsZM/s1600/11150958_10206327831745268_8488612708874370993_n.jpg" height="211" width="320" /></a></div>
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Our whole family.</div>
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Tom recently attended his first Diabetes Camp, organised through Diabetes Australia, on his own.</div>
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He knew no one.</div>
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We were all incredibly nervous taking him and it was obvious he had concerns when we said goodbye.</div>
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BUT it is probably the best thing he has ever participated in.</div>
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He came home covered in mud, mobile phone numbers written up his arm and had the biggest smile.</div>
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As I was getting Amelia's wheelchair out of the back of the car he yelled "MUM" and jumped into my arms!</div>
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After a while I explained that we were getting McDonalds on the way home for lunch.</div>
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"Oh great" he said. "After all my excellent eating, you are going to buy me something bad".</div>
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Oops.</div>
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Tom has returned from camp giving himself all of his own needles!</div>
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You have no idea how much this helps me.</div>
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All the arguing, anxiety and reminding has gone.</div>
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He just does his needle!</div>
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Amelia is full of pre-teen hormones.</div>
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Sometimes we all duck for cover and sometimes we are laughing hysterically at her sense of humour!</div>
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She has definitely become more confident this year and is much happier overall (even when we all need to duck for cover!).</div>
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<a href="http://1.bp.blogspot.com/-NDWF6x_QGos/VTOZd1NHFZI/AAAAAAAABUM/0m7f5FjjN4A/s1600/302.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-NDWF6x_QGos/VTOZd1NHFZI/AAAAAAAABUM/0m7f5FjjN4A/s1600/302.JPG" height="240" width="320" /></a></div>
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I have been sharing this gorgeous girl's blog on my page a lot.</div>
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We met in 2009 when both of our daughters started their first year of Primary School.</div>
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There was actually a small group of us that gravitated towards each other that year.</div>
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Julia was the only one in the group who knew other mum's but she still chose to hang around with the cool "misfits".</div>
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You could not possibly find another group of people that were all so totally different from each other.</div>
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But we all fitted nicely together.</div>
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When we were in Disneyland, one of the "group" lost her life suddenly.</div>
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Kel went from having a cough to all of her organs shutting down.</div>
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It was and still is beyond devastating.</div>
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Julia is into her second year of stage 4 cancer.</div>
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Many of you, like me, are living through her battles and realisation of her future through reading what she writes online.</div>
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I am hoping with all I have that she still has a "long time" because I am not ready to lose another person from this group of misfits.</div>
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Recently she wrote a blog that many feel guilty about....</div>
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It was about how individuals focus on the need to be "busy".</div>
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Please have a read of it......</div>
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<a href="https://fivefairiesandafella.wordpress.com/2015/04/15/the-glorification-of-busy/">https://fivefairiesandafella.wordpress.com/2015/04/15/the-glorification-of-busy/</a></div>
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</div>
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If you get a chance, if you are not too busy (pun intended!), then please read her other entries too.</div>
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Something that I feel strongly about is the pressure on individuals to be a certain way.</div>
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I am talking about personalities and everyday life.</div>
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Most of it is contradictory and only lowers peoples self esteem.</div>
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It does not allow people to just be themselves and follow what is their journey in life.</div>
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Let me give you an example......</div>
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Facebook shares articles about how people's profiles are fake. They only show happy faces and stories to boost peoples ego's. It is unrealistic and not truthful.</div>
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THEN</div>
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You have a memo circulated that says "Shut the fuck up. I don't want to hear your whinging".</div>
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There are mothers constantly attacking other mothers and everyone knows the argument of bottle or breast.</div>
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I am not talking about just online.</div>
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I am talking general media and even face to face interactions.</div>
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People criticise and talk about the "ideal" scenario for everything and everyone.</div>
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Why can't we all just BE?</div>
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Judgement from others is a big negative in our society.</div>
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It is also a big negative for the guilt we put on ourselves.</div>
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When I was pregnant with Amelia, I was given a book about how to "create" the perfect baby in regards to sleep, eat, bath etc.</div>
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I SO believed that the routines listed in this book would be what I needed.</div>
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That they would work.</div>
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I spent hours typing up the routines, laminating them and sticking them to the wall in the baby nursery.</div>
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They didn't work.</div>
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They made me stressed out and feel like a total failure.</div>
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Then I read a letter to a children's magazine from a mum.</div>
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She spoke of just "going with the flow".</div>
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Such a simple statement, but one that taught me to relax and enjoy being a mum.</div>
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I think we all need to "go with the flow" and stop the personal attacks and guilt on ourselves and others.</div>
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Just BE.</div>
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xxx</div>
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Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-83329943489635614312015-03-22T17:41:00.001+11:002015-03-22T17:41:20.582+11:00Months of Catch Up.Hello.<br />
<br />
It has been a long time between posts, so let me introduce myself again!<br />
My name is Amanda. I am slightly nutty, very emotional and have recently been taught to live life differently.<br />
In the last 4 years, I have been on a roller coaster of feelings and emotions that I never knew about.<br />
You see, our beautiful daughter, Amelia, was diagnosed with Ataxia Telangiectasia in 2010, and our whole world crumbled.<br />
I have been living a life I never even considered in my future aspirations in my early 20's.<br />
<br />
I find that by writing my feelings and thoughts down HELPS.<br />
I have also found other caring people in my own personal journey.<br />
<br />
I have lost friends, gained friends, experienced haters and changed as a person.<br />
<br />
Our son was diagnosed with Type 1 Diabetes 14 months ago.<br />
<br />
I know need to start back a few months........<br />
<br />
We had an OK Christmas.<br />
A "Minecraft" Christmas, as Amelia and Tom called it.<br />
<br />
The kids loved their gifts from Santa and those around us.<br />
<br />
They were presents and we were happy to see smiles and eagerness to download and play with special app games and merchandise. <br />
<br />
Our Six week Summer Holiday was busy.<br />
I was determined to "make up" for the time I had lost through working last year and my subsequent depression.<br />
<br />
I reconnected with the kids.<br />
Emotionally, physically ........ psychologically.<br />
It was awesome, amazing and beautiful.<br />
<br />
Now, I need to tell stories through photograghs.<br />
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Amelia insisted on buying a Christmas tree for her room.<br />
She MADE me go to K-Mart so that she could choose her tree and decorations. <br />
<br />
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Our family was invited to attend a Christmas party for Anglicare, a charity organisation that purchased Amelia's $15,000 communication device. As Amelia's ability to talk decreases, she is able to use this to continue talking to us.<br />
I chose to take Tom only due to the noise of an arcade game venue. Amelia can no longer handle loud noises.<br />
It was wonderful to spend 1 on 1 with Tom playing mini golf, arcade games with flashing lights and ten pin bowling. A very special person in our lives looked after Amelia till afterwards.<br />
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Tom's school Christmas Concert.<br />
Something was wrong with his tongue.<br />
<br />
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This is going to be a long story.......<br />
<br />
The man in the photo recently left Tom's school.<br />
Everyone was heartbroken, but we had a very special reason.<br />
<br />
This man was a teacher that all teachers should aspire to be.<br />
<br />
His primary focus is not on academics.<br />
It is on the social, emotional and wellbeing side of each individual child's life.<br />
<br />
If children are not feeling safe, happy and having fun, then how can they learn?<br />
<br />
That was the difference with this man.<br />
<br />
When Amelia began there in Grade 1 as a child with "mild cerebral palsy" he was like a magnet to our family straight away.<br />
When a child thought it was funny to repeatedly push Amelia over in the sandpit, he addressed the issue immediately.<br />
<br />
When Amelia spent the week in hospital and emerged with the label of Ataxia Telangiectasia, he did what no one else did.<br />
He focused on Tom.<br />
<br />
He recognised that Tom was the forgotten child in all of the grief and move to acceptance.<br />
Tom was only 3 years of age and was repeatedly taken into his office, helped do "jobs" and was spoken to like HE was important.<br />
<br />
That continued right up until last year.<br />
He always knew where Tom was playing if we needed to pick him up early AND always knew of what this little man had happening at home. <br />
<br />
Amelia was treated like a princess by this man and when Amelia decided "I do not belong here anymore", he was the first to arrive at the classroom where she had announced this to me amongst busy grade 3 children.<br />
We decided that she would come back the following week for one last day.<br />
<br />
That last day will be with me forever.<br />
During the usual morning assembly, he addressed the school to announce Amelia's final day.<br />
It will always brings tears to my eyes the poem he read.<br />
<br />
While most would have just " brushed off " that this was her final day, he recognised what it meant.<br />
<br />
On his own final day, he stood up in front of the school with a Dr Suess hat on.<br />
He told a story of the author of these famous books.<br />
A story before he published any books. Before he became famous. <br />
He spoke of how this man was repeatedly turned away from publishing houses because his idea was "rubbish".<br />
<br />
He told the children that this man never gave up and was eventually published.<br />
<br />
The author has now published over 70 books and is famous worldwide.<br />
It would be hard to comprehend his wealth.<br />
<br />
This man told over 500 children in this assembly<br />
"Never give up. Keep aspiring to be and do what your dream is".<br />
<br />
I will NEVER forget that speech.<br />
<br />
When he arrived at our house, just before Christmas, he gave his Dr Suess hat to Amelia.<br />
<br />
What could be more poignant?<br />
A child that has so many limitations and yet this hat says.....<br />
"Never give up. Keep aspiring to be and do what your dream is".<br />
<br />
Everytime I look at that hat, I am reminded of the man who believed in my children.<br />
REALLY believed in their future.<br />
REALLY believed they could be something and someone.<br />
<br />
It was the same to all children at the school.<br />
You only needed to look at the amount of parents in attendance in his final assembly.<br />
People who took the morning off work, children that took the morning off school.<br />
<br />
Mr Phil Barnes, I do not know if your new school realises the person they have hired, but I know the person we have lost.<br />
<br />
You will be in our hearts and memories forever.<br />
<br />
I had so much more to write and speak about......<br />
BUT I will leave that for another day now.<br />
<br />
xxx<br />
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<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-58151864613384876062015-02-23T17:30:00.001+11:002015-02-23T17:30:08.837+11:00All Innocence GoneHello.<br />
<br />
It has been a long time between posts and I am quietly succumbing to the defeat that is computers.<br />
<br />
You see, I have had a blog accumulating for quite some time now.<br />
A blog of our Christmas, Summer holidays, special visitors and information about a new family member.<br />
It was a long one that would have required the audience to pre-plan a cuppa and food.<br />
<br />
I am trying not to cry over the fact that stupid blog did not SAVE after a recent VERY long session spent on the computer.<br />
I will try again.<br />
I promise.<br />
<br />
I also have two heartfelt movies, that have been made, to share.<br />
Due to my disastrous computer ability, I am unable to upload to You Tube to share with you.<br />
One Christmas present to Scott.<br />
One to myself.<br />
<br />
I whole heartedly feel I need to skip that blog anyway.<br />
Something so much more important has happened......<br />
<br />
Amelia called me into her bedroom the other night.<br />
I was not in a good mood.<br />
My frame of mind was ready for children to go to bed so that I could stare blankly at a wall.<br />
<br />
"Are you in a bad mood?" she asked carefully.<br />
"No sweety. I am fine. What's up?" I answered.<br />
<br />
"Am I going to die from my A-T?".<br />
<br />
I stopped all movement and thoughts.<br />
My heartbeat quickened.<br />
<br />
I realised that the next words I spoke were going to be some of the most important ones of her entire life.<br />
My words were going to either make or break her whole being.<br />
<br />
In seconds I visualised everyone that loved this beautiful child and how they had coped with the medical description of Ataxia Telangiectasia.<br />
<br />
This child was 11 years old.<br />
How would she cope with the honesty of her own mortality?<br />
<br />
I knelt down next to her in the darkness and looked at her face.<br />
<br />
"A-T does take a lot of children away before they should go". I began.<br />
"Some die when they are really young, while others live well into their 20's. You are considered a very healthy A-T child. No one knows what the future holds Amelia and daddy and I are trying our best to not let it happen".<br />
<br />
Amelia began crying.<br />
I climbed into bed with her and just held her.<br />
<br />
"I do not want to die" she said with great fear.<br />
<br />
"Get out" she said suddenly.<br />
"Get out and leave me alone".<br />
<br />
I was not comfortable leaving her like this, so I turned to the monitor next to her bed.<br />
I knew Scott had the responding receiver.<br />
He always has it.<br />
<br />
"SCOTT. Get in here NOW" I said firmly.<br />
<br />
For the first time ever, I did not know how to explain something to a child.<br />
My child.<br />
A child who is slowly dying.<br />
<br />
I ALWAYS knew how to explain something to a child.<br />
It was my degree at University.<br />
I was blank.<br />
<br />
Scott came in.<br />
<br />
"Hello. What's going on?" he asked casually.<br />
Obviously he had not heard the previous discussion through the monitor.<br />
<br />
"Amelia wants to know if she will die from her A-T".<br />
<br />
"Oh" he said kneeling down.<br />
<br />
He looked at her tears and my plea for help.<br />
<br />
All of a sudden, I saw a man with amazing capability and confidence.<br />
<br />
"Amelia" he said firmly.<br />
"We do not know what the future holds for you, but I really need you to look at the...NOW. <br />
You are the most amazing, beautiful child, who is happy and enjoying life. <br />
You are surrounded by so many people that love and support you. <br />
You have 2 parents that love you. <br />
You have a happy home, full of animals. <br />
Have you ever noticed that you ask for ice cream.... I give you ice cream?! <br />
So many children have no home or parents that argue all the time. <br />
Your life is wonderful.<br />
Look at the NOW and not what MAY happen in the future.<br />
No one knows what is going to happen in the future.<br />
Please just love and live for NOW".<br />
<br />
I lay silent staring at the ceiling.<br />
<br />
Amelia and Scott began laughing and talking of many things.<br />
<br />
Hours later, as my body felt light and my mind felt numb, I lay in bed to go to sleep.<br />
<br />
I turned my head to the amazing man that I had just fallen in love with again.....<br />
<br />
"Thank you" I said.<br />
<br />
xxx<br />
<br />
<br />
Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-47084519630037996152015-01-06T16:54:00.001+11:002015-01-06T16:54:44.972+11:002015Hello everyone.<br />
<br />
I hope everyone had a wonderful Christmas and said goodbye to 2014 as excitedly as I did.<br />
For me, it was the end of a horrible chapter in my book.<br />
<br />
I lost myself.<br />
<br />
The beginning of 2015 has already felt euphoric.<br />
I feel like my whole body and mind is cleansing.<br />
The events, difficulties and negativity of 2014 has been washed down the sink.<br />
Scott, my beautiful gentleman, has made that so much more possible.<br />
He is flourishing at work and is so much happier.<br />
<br />
During the past fortnight, I have sat back and reassessed my life......our life.<br />
I can feel my patience for each child returning.<br />
I can feel the cleansing of bad experiences, situations, friendships and thoughts.<br />
<br />
I feel in control of 2015.<br />
<br />
This is a blank chapter.<br />
One that I can dictate and choose.<br />
<br />
I am the narrator of my own happiness.<br />
<br />
I will choose who and what will be a part of my life.<br />
I will move swiftly through situations that are hurtful and negative and choose to invest my time and feelings ONLY into those that return the same kind of respect.<br />
<br />
In 2015, I am going to.......<br />
become fitter, <br />
beautify our home, <br />
spend more time with both children at school,<br />
have fun cooking yummy meals and snacks,<br />
have fun and spend quality time with both kids <br />
AND<br />
enjoy, love and train the new family member....<br />
Buddy.<br />
<br />
Buddy was a long time coming.<br />
After having a Labrador, I have always longed for another.<br />
Poor Scott saw the photo's of this gorgeous little man and could only say "Get Him!".<br />
We went and visited him last week.<br />
Out of 9 pups, he is the fattest.<br />
I could not stop laughing and calling him "fatty boombah".<br />
Buddy is ADORABLE !!!<br />
<br />
Tom is maturing.<br />
His difficult and argumentative ways are quickly making way to acknowledging those around him.<br />
He has grown even taller (if that is possible for someone his age) and grown his hair to "Bieber" level !!!<br />
<br />
"I am going to grow a mullet" he says.<br />
"No you are not" I say firmly.<br />
"But lots of people do it" he says (naming famous people).<br />
"Not in this house, we don't" I answered.<br />
<br />
I love to watch him playing with other children at home and when we are out.<br />
I love watching his interactions with Amelia.<br />
<br />
I am really happy that we have connected again after my "work life".<br />
<br />
Amelia is approaching teenage-hood and is scary.<br />
She can go from happy to "sobbing" sad in 0.1 seconds.<br />
It is scary stuff.<br />
She screams, yells and laughs till she cannot breath so quickly...... <br />
we all look at her in disbelief.<br />
<br />
Tom : How can she be so happy and then so sad so quickly?<br />
Scott : Welcome to women mate.<br />
<br />
I need to be in a good place to deal with these hormones!<br />
<br />
And finally,<br />
I leave you with SEX.<br />
That conversation you need to have with your children as they get older....<br />
<br />
Both kids were laughing over the word "sex".<br />
Me: What do you think that word means?<br />
Amelia: Having a baby.<br />
Tom: Hugging in bed with your undies on.<br />
Me: Ok. Daddy and I will need to have a talk to you both sometime about what it really means.<br />
Tom starts bouncing with excitement in his seat, desperate to talk.<br />
Me: Yes Tom ?<br />
Tom: Ohhhhhhh. I know what it means. HUMPING. <br />
That is what it means. HUMPING. <br />
Ummmm mum, what does that mean ???<br />
<br />
Discussion still to be had....<br />
<br />
xxx<br />
Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-47286484910881941442014-12-20T14:28:00.002+11:002014-12-20T14:28:23.794+11:00ReflectingHello.<br />
<br />
I am feeling rather reflective today and am processing many things.<br />
It seems understandable with Christmas Day and the end of another year approaching.<br />
Today is the first day in a long time that has allowed us to sit and do whatever our hearts desire.<br />
<br />
The knowledge we have of 2015 is allowing us to look forward to what will hopefully be a wonderful year.<br />
2014 has been very difficult and one we will be glad to say goodbye to.<br />
<br />
Tom came home with another amazing school report.<br />
The school is introducing a very thorough education session to all staff and all the supplies needed for a diabetic child while at school, on an excursion or at camp. This is in response to Tom having a severe hypo while attending an excursion and there being no "jellybeans" in the first aid kit.<br />
(I had sent all supplies but Tom accidently left it at school). <br />
He will be in a composite grade with children a year higher and his teacher sounds like she will be good for him.<br />
<br />
Amelia is happy that she has most of the same staff and students that she had this year.<br />
She is very sad to see one staff member being moved to another grade but we have reassured her that we will ensure they still see each other regularly.<br />
<br />
Scott is in a full time job that he is enjoying and I am very proud of his work ethic to move beyond just the job role. He is now also passionate about emotional well being, kindness and happiness among the staff. If you are going to spend so much time together then you may as well make it enjoyable.<br />
<br />
I am looking forward to a new family member coming to join us in late January.<br />
A Labrador puppy from a reputable breeder.<br />
He is a golden colour and will be a wonderful companion for all of us.<br />
I am also grateful that Tom will have a playmate in the backyard.<br />
Tom is already sleeping with a teddy bear, putting his smell on it, so that our new baby will have something to nestle into at night.<br />
<br />
This past week my father in law replaced our revolting, stained carpets with a stunning vinyl floorboard.<br />
It is amazing how it has not only changed the look of the house, but also our mood within.<br />
It is calming to look at and does not make you feel like the house is constantly "dirty".<br />
I am looking forward to open fires in Winter!<br />
<br />
My dad also installed pay TV for us. <br />
I am loving flicking through all the channels and watching movies.<br />
<br />
Next year I am going to focus on returning to the book I began writing.<br />
I have so much that I have already written and yet so much more to do. <br />
That as well as keeping the house a bit tidier than this year !!<br />
<br />
My dad is still not better and I hope with the surgeons he will be seeing in the future, he will be healed.<br />
<br />
Next week will be full of excitement as Amelia and Tom open their presents.<br />
I have been able to order many items online that none of us knew were available.<br />
I just hope they arrive before Christmas!<br />
<br />
In the last 2 months Amelia's feet have begun to "roll" when she walks. They are no longer flat on the ground and it makes assisted walking very difficult. She collapses to the ground often with Scott and I catching her fall.<br />
<br />
Our new Premier announced yesterday that he aims to have Medical Marijuana available to "those who need it" by the end of 2015. He wants Victoria to be the first state in Australia to legalise something that is so badly needed.<br />
<br />
2015 is going to be a good year.<br />
<br />
Merry Christmas everyone.<br />
Enjoy the excitement on children's faces and cherish family times together.<br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-50809780221248432102014-12-15T00:56:00.004+11:002014-12-15T01:05:56.012+11:00DeathHello.<br />
<br />
Today we had to have a conversation about death.<br />
<br />
As you all know, we have chosen to protect the kids about the full knowledge of Ataxia Telangiectasia at this stage.<br />
You never realise the importance of "saving the innocence of children" until you are in a situation like ours.<br />
<br />
This is how it came about.....<br />
<br />
Amelia returned from an amazing evening with a staff member from her school.<br />
She has become close to the family and friends of this staff member and sees it as her special place.<br />
But she was tired.<br />
Exceptionally tired.<br />
I lay down with her to cuddle and help her go to sleep.<br />
<br />
She started panicking...<br />
"Mum am I going to die?".<br />
"Mum, please make sure I wake up in the morning".<br />
I asked her why she was feeling this way and she could not explain why.<br />
Had she heard something?<br />
Did she feel something?<br />
<br />
Amelia has shown on many occasions her ability to teach adults lessons about life.<br />
She has been incredibly intuitive on many occasions to know things that we do not.<br />
Was this one of those times?<br />
<br />
"I feel like I am going to die".<br />
"Am I going to die from my A-T?".<br />
"I think about it all the time".<br />
"I think I am going to die tonight".<br />
<br />
I began feeling petrified and heartbroken all mixed together.<br />
<br />
I told her that I will ensure she wakes up in the morning and we will talk about this more then.<br />
She needed to sleep.<br />
<br />
As I left her room, I began to panic myself.<br />
What if it was going to happen tonight?<br />
<br />
Scott and I stayed up for a long time.<br />
We talked about how we were going to approach this.<br />
We put her monitor on as loud as it would go.<br />
We listened to her breathing as she slept.<br />
<br />
The next day she woke up and said "I do not want to talk about it today".<br />
I said she had no choice and we would be.<br />
<br />
I asked her "Do you think you may die soon because of your A-T?".<br />
She quietly nodded her head with tears in her eyes.<br />
I then explained that A-T children do die sometimes just like some children die of an asthma attack or go missing from their front yard.<br />
Lots of children and adults die too early for lots of different reasons.<br />
We all die at some stage. <br />
I explained that her inside health is excellent and that is how A-T children generally pass away. She does not have the kind of struggle with coughs and colds like other A-T kids.<br />
<br />
I then moved the conversation on to where we may go when we die.<br />
I explained that no one has come back to tell us of the place that we go to but I do believe there are people that love us waiting for us there.<br />
I explained that if she were to die, Nana Val (Scott's mum) and Barney (our very loved labrador) are already there waiting.<br />
She will be able to run, play, dance and sing.<br />
Her A-T would be gone. <br />
The place will have beautiful green grass, fairies and butterflies flying around and a gorgeous sunshine.<br />
It will be magical and you will feel free.<br />
<br />
The conversation approached missing those "left behind" ...................... us.<br />
I explained that this magical place does not let you feel sadness.<br />
You only feel happiness.<br />
You will be there waiting for us.<br />
We will be so happy to have YOU show us around when we die.<br />
<br />
Dying is not a bad thing.<br />
<br />
Scott said I did good.<br />
<br />
I hope that one when the time does actually come to say goodbye, I have begun the process of easing some of the fear of dying.<br />
Too sad that you have to have this conversation with an 11 year old.<br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-56776185735678097872014-12-10T21:36:00.002+11:002014-12-10T21:36:18.900+11:004 Years since Amelia was RediagnosedHello. <br />
<br />
This week marks 4 years since Amelia was rediagnosed.<br />
<br />
Below are my status updates on Facebook during that week.<br />
They are short and sweet... (well not totally).<br />
It does not include the pages and pages of comments....... <br />
<br />
Very hard to read but grateful that I was not alone.<br />
As well as Scott, family and friends, my Facebook friends got me through.<br />
<br />
<br />
<u><b>November 25th 2010</b></u><br />
<br />
Gutted..... absolutely gutted. After 4 years the ball starts rolling
again for a diagnosis. In the next 2 weeks Amelia will be admitted as an
inpatient for an MRI and lots of tests. They will now be looking for
metabolic and neurological disorders which have a high rate of
deterioration over time. She also showed skills not consistent with cp.
Very scared now.....<br />
<br />
<u><b>November 28th 2010</b></u><br />
<br />
Just rang the hospital. They said it will be a few days before I find
out when we are going in. Trying to organize 4 specialists in the one
room at the same time is quite difficult apparently.....damn. I just
want it over.<br />
<br />
<u><b>November 29th 2010</b></u><br />
<br />
Ok..... If there are beds available, we go in Monday for an MRI and
lumbar puncture and take any blood tests needed while under anesthetic.
Tuesday we get results and see any specialists we have to see based on
the tests results. Relieved now that we have a day. And all your love
and support definately got me through the weekend......<br />
<br />
<u><b>December 1st 2010</b></u><br />
<br />
Today is a moment in history..... Glee karaoke on wii is released today.
I will be able to finally realise my full potential as a singer. (
Scott and the children apologize to our neighbors in advance....) <br />
<br />
<u><b>December 2nd 2010</b></u><br />
<br />
What a beautiful send off the school gave Amelia..... Both of us crying.<br />
<br />
<u><b>December 4th 2010</b></u><br />
<br />
I have a sign that says "The Good Life". Amelia called me over and said
"mum, we are not having a good life". ( my heart sinks ). " why sweetie?
I think we are" I say. " cause we have Tom mum".......and here I was
thinking she thought because of her own difficulties !!<br />
<br />
<u><b>December 5th 2010</b></u><br />
<br />
<div class="fsm">
1. Sooo very proud of Amelia. No fighting the anesthetic.... Just co-operated. Now we wait for her to come out.<br />
</div>
<div class="fsm">
2. She may have gone to sleep happy but she definately did not wake up
happy. Very distressed by the drip in her arm and says she feels "yuk".
Oh dear.....<br />
</div>
<div class="fsm">
3.She must be feeling a bit better..... She wants macca's !!!!!!! Lucky it is just downstairs !! <br />
</div>
<div class="fsm">
4. BUGGAR..... Just got told we will not get any test results for WEEKS.....</div>
<div class="fsm">
</div>
<div class="fsm">
<u><b>December 6th 2010</b></u></div>
<div class="fsm">
</div>
<div class="fsm">
1. Omg..... Absolutely f'n huge...I am shaking.... I have just been told i
definately DO NOT have a child with cerebral palsy. Amelia's balance is
what causes her so much difficulty only ( which apparently affects her
speech). Now to find out whether it is a rare disorder that slowly kills
her balance or something that can be cured......<br />
</div>
<div class="fsm">
2. And Scott wasn't here when they said !!! Damn!!<br />
</div>
<div class="fsm">
3. 4 hours sleep.... In our room, a baby with a severe cough connected to
beeping machines, A mother snoring and the helicopter pad right
outside our window..... Oh and yesterdays news still processing.<br />
</div>
<div class="fsm">
4. she
is a puzzle" a specialist just said. It can go either way now she said
(after my persistent questions). It could be something much better than
cp or much worse. More tests maybe and weeks to find out. Mmmm<br />
<br />
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<tr class="_51mx"><td class="_51m- vTop _5ep5">5. MRI result back. Not good. Talk later when we know more........</td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"><br />
</td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"></td><td class="_51m- vTop _5ep5"> </td><td class="_51m- vTop _5ep6"><br /></td><td class="_51m- vTop _5ep7 _51mw"></td></tr>
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<tr class="_51mx"><td class="_51m- vTop _5ep7 _51mw">6. I just cannot stop crying now.......It is not good at all.<br />
<br />
7. Everything I had hoped for is not happening.... Just the opposite<br />
<br />
8. Ok.... Amelia's MRI results came back. There is brain tissue missing at
the base of the brain that was there 4 years ago in the original MRI.
The part that is gone can never be retrieved. They do not know what is
eating away at her brain or how to stop it.......<br />
<br />
9. Staying again tonight. More tests tomorrow. I cannot possibly express my
gratitude enough for all your comments, love and support. I have told
them I am not leaving until they have done everything they can possibly
do. I do not want them to send us away and then forget about us. Test
results will still take weeks though.<br />
<br />
<u><b>December 7th 2010</b></u><br />
<br />
1. She is always happy! She has no idea what is going on. We are making sure all discussions and tears are done away from her.<br />
<br />
2.Got told last night to start to start preparing ourselves for the worst.
It is highly likely it will be a rare degenerative disorder that there
is no treatment for. So I said to Scott " let's make her life amazing.
Take her to Disneyland".<br />
<br />
3. Staying tonight again....<br />
<br />
4. Fuck the diet........<br />
<br />
<u><b>December 8th 2010</b></u><br />
<br />
1.Scott asked tonight "are any of the things you are looking for life threatening?". She said "yes".<br />
<br />
2.Big day of tests, some require sedation. 4 departments involved now.
Developmental medicine, genetics, neurology and macrobiotics. But may be
coming home late today.<br />
<br />
3.Please know that I am reading everyones messages even if I do not have time to reply.... Love to all.....<br />
<br />
4.On a positive note we had a Christmas concert last night from Amelia and
her new best friend, Ashton , because both have missed their school
Xmas concerts this week . So cute and funny !!!!! <br />
<br />
5. <br />
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<div class="_42ef">
<span class="_5shl fss"></span></div>
</div>
<br /></td><td class="_51m- vTop _5ep6"><a class="" href="https://www.facebook.com/photo.php?fbid=1666975044836&set=a.1512229416292.212035.1551096634&type=1" rel="theater"><div class="uiScaledImageContainer" style="height: 150px; width: 150px;">
<img alt="Amelia's slowly woke up out of sedation to the clown doctors performing in her room...." class="scaledImageFitWidth img" height="200" src="https://fbcdn-sphotos-a-a.akamaihd.net/hphotos-ak-xaf1/v/t1.0-9/s200x200/155609_1666975044836_826679_n.jpg?oh=fcf23de1be2b853e8828655b70d4efd7&oe=551304D4&__gda__=1426065114_d1e7a0ae15f57d132fd004ea0fb6ef5c" width="150" /></div>
</a><div class="fsm">
<b>Amelia's slowly woke up out of sedation to the clown doctors performing in her room....</b></div>
</td></tr>
</tbody></table>
<br />
<br />
<u><b>December 9th 2010</b></u> <br />
<br />
1. Lots of tears today. Blood tests taken for many rare disorders.
Skin/muscle biopsy taken from her arm, nerve/muscle test and a thorough
eye test. Results will come back end of January.....had a very emotional
moment when I heard about the "dedication" done at amelia's school
concert. How I wish she could have just been there and everything was
just back to the way it was..........<br />
<br />
2. Big meeting with all departments this afternoon. Tom's last day of
"little kinder" and I can't go. And the crying starts again. I am so
scared about this meeting......<br />
<br />
3. Thanks guys. Meeting at 3. Have a bad feeling.........<br />
<br />
4.Going home with a probable diagnosis. Not good and no cure or treatment.
We start living amelia's life 10 fold immediately....... Before we lose
her....... <br />
<br />
xxx </td><td class="_51m- vTop _5ep7 _51mw"><br />
<br />
<br />
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Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-86236764527675602372014-12-01T18:18:00.003+11:002014-12-01T18:18:37.257+11:00Climbing the LadderHello.<br />
<br />
I do not know if people realise, but writing on here is a very intense process.<br />
<br />
Sometimes it is "oh shit. I have not told them about Amelia lately".<br />
<br />
But sometimes it is an emotional cleansing from my own brain.<br />
It is revealing thoughts that people do not normally tell anyone.<br />
It is maybe only me that ever thinks AND feels such intense emotions. <br />
<br />
These ones can be very draining.<br />
I quite often need to be alone or go to sleep afterwards.<br />
<br />
Explaining it makes me feel like a character out of The Twilight Saga almost !!!!<br />
<br />
Today I wrote the following post, in response to someone, on Amelia's Project page on Facebook......<br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">We
struggle with "the strength". The weight of it is sometimes so
consuming and debilitating that we fall over and cannot get back up. I
personally then attack myself for not coping and then that only pushes
me further down. It is a very dark and lonely experience. I almost
hospitalized myself last week but after finally finding my words for the
blog and realizing some of what I needed to deal with ....... The
comments, messages and calls from others and the cotton wool care from
Scott, I realized I was the lowest I could go. This afternoon I began
tackling my "roster" and with everyone's words and support from others
(including yourself) I have begun to see some light. I cannot possibly
explain how that has pushed me to reach for another level higher xxx</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Whether it is depression, bipolar or just our circumstances.....I have moments.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I have times where I am high and times where I am low.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Times that are very apparent since Amelia's diagnosis, which makes me think a combination of all three. </span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">This low has been the lowest I have ever been.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I really struggled with this one.</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">This time the self loathing, non-deserving and regrets of friendships lost, took over.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">This time I struggled to function.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">This time I thought I was at a point of no return. </span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">But writing the blog on Saturday night, reading all of the messages, texts and listening to my voicemail helped.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">But looking at Scott's face on Saturday night.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I cannot describe it.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">The look of despair.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I do not want to be "that person".</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I do not want to be the person who gets that kind of look.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I made the roster and followed it today.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I put music on and looked around to write down positives.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">But you know what?</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Those things would not have helped last week.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I needed to hit the lowest I could go for this journey before I could recognise what is going to help me climb back up.</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Hit the darkest, loneliest place in all of humanity and realise there is nowhere to go but up.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">It may take days, it may take months.</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Many people struggle with it.</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Thank you to those that told me I am not alone.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">Your secret is safe with me.</span></span></span><br />
<br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">I am starting to climb up that ladder now. </span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0">xxx</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body"><span class="UFICommentBody" data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0"><span data-reactid=".20.1:3:1:$comment875892792461081_875904199126607:0.0.$right.0.$left.0.0.1:$comment-body.0.$end:0:$0:0"><br /></span></span></span>Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-48297714154904232182014-11-30T10:07:00.001+11:002014-11-30T10:07:07.271+11:00Thank youHello.<br />
<br />
Thank you for reading and commenting on last night's entry.<br />
It is something that has been building and I have been unable to articulate it until now.<br />
<br />
Thank you for your calls, messages and contact directly with Scott (he will not leave my side!).<br />
<br />
Thank you for being non judgemental and accepting my current thoughts in this difficult life we lead.<br />
<br />
I am going to now attempt moving forward by addressing the bulk of the issues.<br />
<br />
I am going to make a chart for myself, setting out a routine for the week that allows for "downtime" while the kids are at school.<br />
I am going to finish arranging this house to the way I know makes me relax.<br />
I am going to begin spoiling myself again with books, movies and favorite TV shows.<br />
I am going to plan meals and snacks that puts a smile on everyone's faces.<br />
<br />
I am going to make a chart for Tom that may minimise arguments over insulin needles.<br />
<br />
I am going to spend more quality time with Amelia.<br />
<br />
Finally I am going to address the way I feel about myself.<br />
My self esteem needs improvement (or I actually just need some!). <br />
Try to stop the self loathing that appears every time a friend disappears or a disagreement occurs.<br />
I am going to learn to accept that we think differently than the majority of those around us and some find they cannot connect with that.<br />
<br />
I am going to begin making a list of positives daily.<br />
I am going to "stop and smell the roses".<br />
<br />
Thank you for being there.<br />
<br />
xxx Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-69982649647970676452014-11-29T17:54:00.000+11:002014-11-29T18:12:14.417+11:00Strong?Hello.<br />
<br />
What I am about to write challenges those that believe I am strong.<br />
It will create a a divided opinion on me as a person.<br />
<br />
It is me though.<br />
<br />
This year I have crept slowly into the chemical imbalance that is "depression".<br />
<br />
My work situation could not have been any less ideal.<br />
To accept a position that many others have left was always going to be a difficult role to take.<br />
<br />
The battle to accept that I was no longer the main carer of both kids was harder than I imagined to accept.<br />
Scott was amazing as a "house husband", do not get me wrong, but I was no longer the go to person.<br />
I was no longer the person to check on them in school and be the first to hear about their day.<br />
Instead I was the exhausted one who came home crying because I could not defend myself in the work politics arena.<br />
<br />
When Scott and I reversed the role reversal, I did not easily slip back into my role of housewife and mother.<br />
The old routine has not come back to me easily and Tom's diabetes throws a spanner into that anyway.<br />
<br />
My Dad had a long stay in hospital and is still not better.......but at home, at least.<br />
My Mum is not well either.<br />
<br />
The past fortnight I have steeped lower than I have ever been.<br />
I am just so sad.<br />
My mood....everything.<br />
I am just exceptionally sad.<br />
I have tried many things to "get out of it" but nothing is working. <br />
<br />
I think the final straw in this battle has been the suggestion Tom has "coeliacs disease".<br />
<br />
I know many of you, with knowledge in this area, will say "It is easy once you learn".<br />
<br />
I realise that.<br />
But, for me, it is another diagnosis.<br />
Another sadness for a child in our family.<br />
<br />
Another diagnosis.<br />
<br />
It seems every time we move through a difficult stage, this baseball bat comes and hits me in the head.<br />
WHY ARE YOU COPING? GET BACK DOWN THERE.<br />
<br />
I thought when we were told to "go home and cherish Amelia. There is nothing we can do" would be the lowest of lows. And lets be honest a statement that is everyone's worst nightmare.<br />
<br />
Then once we found positives, there were extreme highs.<br />
Media attention (papers, magazines and T.V.) Disneyland, new car, car conversion, medical equipment.<br />
Everything was going to be ok.<br />
These people love Amelia as we do and will support us through this. <br />
<br />
Then I lost some very close friends through disagreement.......extreme low.<br />
<br />
Amelia's acknowledgement of where she "belongs", new friends, T.V. commercial, Tom developing into a very kind and clever person.......<br />
<br />
BAM - Tom's diabetes diagnosis at 5pm last Christmas Eve.........extreme low.<br />
<br />
Now possibly coeliacs disease.<br />
<br />
Most people will not understand why I am struggling.<br />
Most people would not understand my sadness.<br />
<br />
When you live with Ataxia Telangiectasia and Juvenile Diabetes every single day, it is hard.<br />
Sometimes too hard.<br />
<br />
When he battles his needles and argues with you for 30 minutes every morning about where to put the needle.<br />
When he has to watch the amount of fat and sugar he eats and count the carbs.......<br />
When he cannot leave the house and get something "appropriate to eat", like parties, BBQ's or resturaunts.<br />
When he goes to sleep and you do not know if his "levels" will get him through the night.<br />
When a teacher will not let him "test" because he/she does not understand.<br />
When he says "I hate my life" because he has diabetes. <br />
<br />
When you have to shower, toilet, feed, dress.....double click the bloody ipad 2 times for her.....it is hard.<br />
When you cannot even bloody understand your own child talk anymore.<br />
When you have in your memory a beautiful, happy, magnetic little girl that was so innocent and had the world at her fingertips....<br />
When her mobilty, speech and friends (because they cannot cope) are ripped away from her.<br />
When her comprehension becomes so slow and yet she is still intellectual enough to mourn and grieve for that part that has slipped away.<br />
She becomes angry, sad and fed up.<br />
She asks "why me?".<br />
She yells at me "do you know how hard it is to be me?". <br />
<br />
No.<br />
<br />
But I know how hard it is to care for, love and look after you.<br />
To make you my whole world.<br />
To make myself responsible to give you the most amazing life I can possibly give you in the time you are with us.<br />
To make myself feel guilty for every moment of every day that I cannot offer that to you.<br />
To know that I am trying so hard to push myself to my absolute limit to give you what you deserve in the short time that you are here.<br />
<br />
I only know that side.<br />
<br />
Very deeply.<br />
<br />
It goes beyond sad.<br />
The depression goes deeper. <br />
<br />
When you hear about possible treatments and studies that are still "developing".<br />
FOR FUCKS SAKE.<br />
Why are they still developing?<br />
She is going to be dead (literally) before any of them eventuate.<br />
Is it money?<br />
Is it time?<br />
Is it that they do not know where the hell to look?<br />
<br />
All of this accumulates and catches up with you.<br />
<br />
So if you think that I am strong....<br />
please don't.<br />
<br />
I am just like you.<br />
<br />
All I ever wanted was to have a happy life with Scott and to have healthy children. <br />
<br />
I do not think that is too much to ask.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-20073530240675788482014-11-24T18:23:00.002+11:002014-11-24T18:23:58.264+11:00YepHello long lost friends.<br />
<br />
It has been a while and there are multiple reasons for that.<br />
Struggling to know where to begin. <br />
<br />
Lets put it in point form......<br />
<br />
1. Scott is working full time and I am home full time again.<br />
Bigger adjustment than previously thought. <br />
<br />
2. I have been trying to re-establish myself at the kids schools.<br />
I like them to know that I am involved and to hear how they are going.<br />
(This is still at developing stage).<br />
<br />
3. Attempting to get the house to a stage where I like it.<br />
Lots of rearranging, moving, tidying and organising<br />
(ALSO still at development stage- you will see this LOTS!).<br />
<br />
4. My dad had an unexpected visit to hospital.<br />
(Very emotional, time consuming and scary. I was the "go to" person for various reasons during this time).<br />
He was in there for approximately 4 weeks and is still not better.<br />
He is taking lots of drugs.<br />
(lots of stories of how funny he thinks he is at later date). <br />
<br />
5. Tom shows that he is carrying too much on his little shoulders for an 8 year old.<br />
Book Psychologist.<br />
<br />
6. Amelia says "I cannot see properly. I think I need glasses".<br />
Book Optometrist.<br />
<br />
7. Finally have meeting with Tom's new medical team and discover we have been taught NOTHING that we should have been taught.<br />
Tom needs blood tests and optometrist to see what damage (if any) has been done to his body.<br />
(referral still on noticeboard) <br />
<br />
8. My 40th Birthday AND Party.<br />
<br />
9.Amelia needs glasses but Tom doesn't.<br />
<br />
10. Tom's psychologist is awesome.<br />
<br />
11. Dentist visit.<br />
Tom is fine, Amelia has the signs of gum disease AND screams the place down because she is petrified.<br />
<br />
12. Hear about a medicine that is helping an A-T child in America.<br />
See Video evidence.<br />
Research and see how it helps many things that A-T destroys.<br />
It is illegal in Australia.<br />
Medical Marijuana.<br />
<br />
13. Amelia forgets to wear glasses to school.<br />
"Don't worry mum. I am a rebel. We don't follow rules in this house".<br />
<br />
14. A medicine in Italy helping A-T children .......... through unorthadox trials.<br />
Betamethasone (a steroid).<br />
Steroid cannot be taken normally.<br />
Blood needs to be drawn from child, rinsed, steroid stirred through, blood inserted back in child.<br />
Qld A-T clinic hoping to be part of more ethical trial.<br />
Amelia would need the "procedure" once a month....... in Brisbane (3 hr plane flight from here).<br />
<br />
15. Amanda goes to see Osteotherapist.<br />
She comments that Amanda's body seems inflammed from neck to toe.<br />
Notices shoulder is out of socket.<br />
"You are 1 lift away from serious injury". <br />
<br />
16. Due to mum being shit house atm, Tom does not take money for school disco.<br />
He gets handed an ipad and is left with it unsupervised (at school).<br />
He googles ALL of our names.<br />
<br />
This includes Amelia Nicholds.<br />
<br />
Take a breath.<br />
<br />
Amelia and Tom are not ready for the truth of Ataxia Telangiectasia. <br />
<br />
Tom then <u>counts</u> how many <u>photos</u> there are of Amelia online <u>COMPARED</u> to him.<br />
<br />
He does not READ everything there is to read.<br />
<br />
Tom comes home and complains that we have put more photo's of HER than HIM.<br />
<br />
17. Scott arrives home from work to Amanda sobbing.<br />
Tom is screaming and sobbing (because mum is).<br />
Amelia has headphones on watching a Minecraft video.<br />
<br />
Amanda decides depression has arrived/<br />
<br />
This blog is about Amelia.<br />
SHE IS FINE.<br />
<br />
(Footnote : All clothes and dishes have been cleaned during this time.<br />
There has been food placed on the table during this time - no comment on WHAT.<br />
Children have NOT arrived at school on time everyday).<br />
<br />
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Evidence that Amelia IS happy <br />
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My dad and I at my 40th.<br />
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My beautiful friends at my 40th (at a trampoline warehouse)<br />
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<br />
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<br />
Miss Amelia with her glasses.<br />
<br />
Just remember the WHOLE family is affected by A-T, not just the child with it.<br />
<br />
xxx<br />
<br />
(Footnote 2 : Amanda will remember many more things after pressing Publish).Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-81952816331193975652014-11-05T17:52:00.002+11:002014-11-05T17:52:18.825+11:00November 2014Hello Everyone.<br />
<br />
I have been wanting to update for so many weeks now but have had trouble finding the time.<br />
Scott is back at work and I am finding it difficult to find my "niche" again.<br />
There is so much to do and so little time.<br />
My dad has also been in hospital and I found that he became a big priority in my day.<br />
Normal jobs combined with "get house back to Amanda way" jobs, kids wanting me to spend time with them at school and exhaustion.<br />
Pure and utter exhaustion.<br />
<br />
I am looking forward to just being able to relax for a couple of hours.....when everything is done!<br />
<br />
Amelia is very happy but still keeps calling me dad.<br />
She points out what DAD does compared to what I do.<br />
She vomited each morning when we made the initial changeover but has now stopped........thankfully.<br />
Tom is very cuddly and keeps talking about "mummy and tom time AND daddy and Tom time".<br />
<br />
Recently we have endured dentist visits, doctor visits and this week an eye check.<br />
Amelia has been complaining of a sore tooth and feels that she needs glasses.... "I cannot see properly anymore".<br />
Tom needs these checks for his diabetes anyway, so we all go together.<br />
<br />
Amelia had to attend a "dressmaker appointment" the other night.<br />
She is going to be "a junior bridesmaid" next year. <br />
She has researched her own dress style on the Internet.<br />
She has chosen the exact length and color of her dress.<br />
When the invitation was extended for me to attend the preparations she firmly said "NO. This is my special time with the bride".<br />
<br />
Amelia still has so many fears but is also displaying so much confidence and independence.<br />
<br />
Halloween happened to be my 40th birthday.<br />
Amelia ONLY wanted to discuss Halloween and how many sleeps till the big day arrived.<br />
Tom thought "mum's birthday" was more important!<br />
She researched costumes and where we would be trick or treating.<br />
In the days prior she had me shopping for all of the costume pieces!<br />
<br />
We have changed Tom's medical care team and are extremely happy with who is now looking after him.<br />
The relationship he has with Amelia is now both positive and negative..... (negative for parenting!)<br />
They are SO close and get along SO well that it can be difficult to separate them at bedtime.<br />
(GET OUT OF HER BED TOM AND GET INTO YOURS!) <br />
Tom ALWAYS chooses to make Amelia laugh hysterically when I need to get her dressed each day.<br />
Seriously Tom? Right now? Could you not have waited ??!!<br />
<br />
On Halloween, Tom emerged from every house and ran up to Amelia "Here I got this for you. I saw your favorite chocolate in their bowl. I told them that you are in a wheelchair and that I needed to get it for you".<br />
<br />
No words for the type of person he is becoming.<br />
<br />
Finally......<br />
We lost another A-T child today.<br />
Her name was Liv and she was only 13 years old.<br />
13.<br />
Amelia is 11.<br />
Liv had the flu last week and ended up in hospital.<br />
She died 24 hours later.<br />
<br />
Having a child with an illness like Amelia's is a very lonely path.<br />
Friends come and go.<br />
But no matter how many friends you have, we are still the parents of an amazing little girl called Amelia.<br />
We are the only ones who nurse, care for and watch the decline......<br />
We see others battle with their own A-T children online. <br />
<br />
Every single day we watch and do what no parent should for a child Amelia's age.<br />
We watch and wait for the future.<br />
<br />
Today is too close to home.<br />
It reminds us of what will occur in our future.<br />
It reminds us of how it can happen tomorrow. <br />
<br />
Keeping sick children and adults away from Amelia is paramount.<br />
<br />
I have seen children at Amelia's school that are sick.<br />
A school that has many children with "a life threatening illness".<br />
The parents STILL send them in sick.<br />
When I see these children in Amelia's class, I take her home.<br />
<br />
I am not ready to say the final goodbye.<br />
<br />
I have shed so many tears for this family in America today<br />
<br />
xxx<br />
<br />
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Melbourne Cup Day<br />
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Similar to the Bridesmaid dress Amelia likes <br />
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Halloween<br />
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The new pet<br />
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Royal Melbourne Show<br />
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Black Shadow<br />
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<br />
Halloween.Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-23623138985949721982014-10-12T17:19:00.001+11:002014-10-12T17:19:45.937+11:00Role reversal - reversedHello everyone.<br />
<br />
Tomorrow is the start of "role reversal - reversed".<br />
Scott begins full time work again.<br />
His best friend has been able to get him a position at the place where Scott originally got him a position.<br />
<br />
I am so proud of the effort and achievement he had through being an "at home dad".<br />
The kids have loved having him at home and will need some adjusting to get used to having him gone again.<br />
<br />
One example is icecream.<br />
Scott regularly gives the kids ice cream after dinner.<br />
I don't.<br />
The other night while watching TV, I announced "shower and bedtime next ad".<br />
"But I haven't had ice cream yet" Miss Amelia said.<br />
"You do not need ice cream tonight Amelia. We are not going to have it" I said.<br />
As I walked Amelia down to the shower, she repeatedly said "You have hurt my heart".<br />
In the shower she said "You have broken my heart".<br />
She said it over and over while looking at me with "puppy dog eyes".<br />
Scott dried her, put her PJ's on and put her to bed.<br />
<br />
I went in to say goodnight.......... with sticky tape.<br />
I started pulling strips off.<br />
I handed them to her and said "these are for your heart".<br />
She looked at me with disgust!<br />
<br />
This weekend Scott and I went away to the city.<br />
It had been planned for months.<br />
The original plans were that Amelia was going away on a camp with Yooralla and Tom was going to mum and dads.<br />
My dad went into hospital last week with an unknown condition.<br />
7 days later it is still unknown.<br />
They could not have Tom obviously, so plans were made for him to go to someones house that we happily assist regularly.<br />
<br />
We had an awesome Saturday afternoon and night as a "couple".<br />
Yummy cocktails (for me!) and delicious dinner.<br />
Something that we never get to do.<br />
It was AWESOME.<br />
The weekend was cut short on the Sunday but we still had a great time.<br />
<br />
Tomorrow we begin another new stage.<br />
Wish us luck.<br />
<br />
(If you have been invited to my 40th and have not replied then please do so!)<br />
<br />
xxx<br />
<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-60517080318581044872014-09-27T15:10:00.000+10:002014-09-27T15:10:50.814+10:00No title is appropriate for this one.Hello!<br />
<br />
(this entry was a work in progress over 3 weeks, so bare with me)<br />
<br />
After a very tumultuous year, I arrive to you in a much happier place.<br />
After many tears I came to the decision to resign from my teaching position.<br />
<br />
I battled, tried different approaches, tried to settle on accepting negativity and defending myself when it really was not needed.... ALL YEAR.<br />
<br />
Kindergarten Teaching is no longer just "teaching children" and working with the child's family.<br />
It is no longer just using your knowledge through a teaching degree and constantly updating with Professional development courses and informal meetings.<br />
It is no longer just keeping detailed records and preparing the child for formal school entry.<br />
It is no longer just about having FUN.<br />
<br />
The new style Kindergarten teaching is now also about office politics.<br />
It is about an industry believing they are part of the "corporate world" when they most definitely are not.<br />
The extra hours that have always been done by a "good teacher" are now expected due to the workload etc etc etc etc.<br />
It is admin, staff meetings and staff communication books where people complain about coffee mugs not being washed.<br />
It is pedantic crap that I can no longer comprehend.<br />
It is coming home at least 20 times over a 9 month period because people are so mean. <br />
<br />
The final point of my story here is, I was given a "difficult centre" with "difficult management" and combined with the above, took so much day time and evening hours and caused SO many tears from nasty people that I could do it no longer.<br />
<br />
I am incredibly upset about the children and parents I have left behind.<br />
To be part of such an important and personal part of a child's life is an honour.<br />
<br />
Children relying on your protection during the time they spend with you, I have had to travel through the pathway of "failure" to come out the other side this past 2 weeks. ( now 4 weeks)<br />
<br />
I find that I am reminding myself of the friends I have lost in the last few years and questioning the person I may have become without realising.<br />
<br />
How can so many people.... (7)..... grow to dislike me so much over the last few years ??? <br />
<br />
I am not allowed to return to say goodbye to the kids that I worked for.<br />
That hurts the most.<br />
I resigned.<br />
I did nothing wrong. <br />
<br />
Anyway, enough crap about me........<br />
<br />
Amelia is awesome but FULL of attitude!<br />
<br />
Comments like ......<br />
"So bad, so sad" are heard from her.<br />
When we lost the Internet the other night, Tom started having a hissy fit.<br />
Amelia threw her hands up in the air and said "It is the end of the world. Our life is over!" while laughing.<br />
Scott and I could not stop laughing.<br />
<br />
Yooralla have sent her an email inviting her to attend various programs on their "school holiday program".<br />
(please read my previous blog on my strong objection to other carers looking after her).<br />
After reading all the activities out to Amelia 2 weeks ago, she strongly chose what she would like to attend.<br />
For 2 WEEKS Amelia has been telling AND ringing people to tell them she is going to The Royal Melbourne Show next week.<br />
Our poor deprived children have never been.<br />
<br />
(Amelia has since been and LOVED it. She has also attended the production of "Annie" and gone rock climbing. Next week she will have a "reptile encounter" and go to a trampoline warehouse).<br />
<br />
I am very proud of her.<br />
She asked to participate in activities outside of our family and we listened.<br />
She wanted some kind of independence and we listened.<br />
<br />
We have built a trusting relationship with Yooralla and therefore I am proud of us.<br />
I am known as the "overprotective parent" and I am ok with that.<br />
<br />
Today we sit and watch the AFL Grand Final as a family unit.<br />
Outings are limited now........<br />
I do not know why.<br />
Have I / we changed that much to lose so many friends......<br />
<br />
To struggle so much with nasty people at work?<br />
<br />
I do not know anymore.<br />
<br />
I will leave you with Part 2 of a conversation recently in our house......<br />
<br />
AMELIA : "Mum? Will I be able to walk when I am an adult?<br />
ME : "No Amelia". (me crying). "You wont be able to".<br />
AMELIA : "Thats ok. I thought that. I think about it lots".<br />
ME : "I understand that you would. If you have any questions, you can always ask us sweety".<br />
<br />
TOM : "Dont worry Amelia. When we grow up, you will live with me. I will look after you".<br />
<br />
I had to walk away and sob.<br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-57102573400541305762014-08-27T23:17:00.001+10:002014-08-27T23:17:25.476+10:00Miss Amelia UpdateHello people far and wide.<br />
<br />
Thought I may need to focus on a blog about Amelia for once!<br />
<br />
Amelia is doing well at the moment.<br />
We received the results back from the blood tests from a few months ago.<br />
You may remember her having to have them because SCOTT PROMISED HER A $90 GIFT IF SHE DID IT !!!!<br />
Anyway the tests results came back "normal".<br />
That is excellent.<br />
A-T can cause or create horrible things to a child's internal organs.<br />
The threat of cancer (1000 times more likely than a non A-T child) damage to the liver, kidneys and lungs are all a constant concern.<br />
We were very relieved to hear that she is fine for now.<br />
<br />
We have also started seeing more of a "new"doctor at our local medical centre.<br />
He is very sweet and we are discovering very thorough.<br />
He has explained that he has spent time researching Ataxia Telangiectasia.<br />
The last time Amelia saw him, he spoke to Amelia so beautifully and was obviously holding back tears in his eyes.<br />
We saw him this time because Amelia vomits after waking up about 3 mornings out of 7.<br />
We wanted to check whether it was something to do with an internal organ that we were unaware of.<br />
He decided it was anxiety.<br />
Even though she is still vomiting, we are all more comfortable knowing that it is just as Amelia calls it "nervous about the day ahead".<br />
<br />
I visited this doctor on a different occasion for something and we got onto the subject of his baby daughter having an ailment that could be life threatening.<br />
After some discussion, I discovered it was because she has a rather large birthmark called a "giant hairy nevus".<br />
Disgusting name really.<br />
Tom has one too though.<br />
While trying to hide my panic I questioned the life threatening part.<br />
He explained it can become cancerous if it sees the sun.<br />
I breathed a sigh of relief then because Tom's is on his butt.<br />
Tom will now be instructed no skinny dipping FOR LIFE.<br />
<br />
This doctor then chose to research for any link between the birthmark (cannot call it THAT name!) and A-T.<br />
There is one.<br />
I can now be pretty sure that even though Tom obviously does not have A-T, he carries the gene and therefore may pass it on to his own children in the future, as Scott and I have done to poor Amelia.<br />
<br />
Glad we have found this man.<br />
<br />
Amelia is coming home exhausted sometimes from school.<br />
Her biggest symptom is fatigue so it is understandable.<br />
This year her teachers are taking her out of her chair a lot.<br />
She is being placed on special sitting machines to stretch her thighs.<br />
She is being placed on her tummy to strengthen her arms.<br />
She regularly uses a walker that she is strapped into (we were shocked to learn that she literally does laps of the school with great excitement).<br />
At a recent "school games day" she was in a race in the walker. Apparently she was incredibly competitive and once the race started virtually ran so she could win!<br />
Amelia is being challenged to spell, read, type on a computer and participate in craft activities (amongst other things).<br />
There is also the swimming class most Tuesdays.<br />
<br />
After a rather difficult year for most of us, Amelia is going through a "cheeky" stage.<br />
She is normally quite subdued when outside the home and when returning home on the bus the other night the bus driver got out his drivers door and said "Amelia has been very entertaining on the drive home. I have never seen her like this!"<br />
As he opened the back door for Amelia to come down the lift, she is loudly laughing and singing "Happy Birthday" to no one.<br />
The driver and I wondered whether there had been some kind of "happy hour" at school that day!<br />
<br />
Her sense of humour is shining at the moment and we are all loving it.<br />
Every night on our way to bed she calls out "CONGA". Tom comes running from wherever and stands in front of her.<br />
Do you know how hard it is to fully support her while all 3 of us do the conga to her bedroom?!<br />
<br />
Besides going to school she does not really socialise with any other children anymore.<br />
Tom is all that she has.<br />
They have an amazing bond.<br />
They both adore each other.<br />
I do not know how to change the social side of things because I see children struggling to know what to say and do when around her.<br />
<br />
A thought that has also crossed Scott and my minds recently is how Tom is going to be when he finds out Amelia's fate with A-T.<br />
If we leave it until his teenage years then he may turn against us.<br />
He may become angry that we did not tell him sooner. <br />
But I am also not ready to watch him fall apart with this horrible knowledge.<br />
<br />
Amelia has many fears and worries now.<br />
She cannot handle loud noises and gets very upset if she is startled by one.<br />
We cannot mention anything "concerning" about Tom in front of her, because she then excessively worries about him. It can be a low diabetes reading (hypo) or the cancellation about something he was looking forward to.<br />
Amelia can no longer handle crowds large or small.<br />
She cannot handle too many people in a room.<br />
Anything can set her off but I am grateful that she knows to ask questions and that is when we know to reassure her.<br />
She has also learnt basic sign language at school (that she then teaches us). If she is unable to talk she can sign it.<br />
<br />
Amelia has grown a lot taller and leaner this past 12 months.<br />
She is now as tall as my forehead. So she is about 155cm tall.<br />
Her legs are no longer strong enough to hold her up even with us supporting her so it is very difficult on our backs, but we manage.<br />
<br />
So there you go.<br />
Amelia in a nutshell at the moment.<br />
<br />
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Amelia and our beautiful Scamp<br />
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The ipad Queen<br />
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Something was apparently hysterical<br />
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Art class (which my parents friend will not let us pay for)<br />
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Tom and I at junior footy the day I had to be the umpire !!!<br />
<br />
Love these kids. <br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-81768246966308226052014-08-23T21:18:00.001+10:002014-08-23T21:18:13.497+10:00A Beautiful PersonHello everyone.<br />
<br />
Many of you know the beautiful friend we made through Amelia's Project that lives in New Zealand.<br />
You may remember that she flew over to meet us.......... (you read that correctly) after reading about our family in a magazine.<br />
You may remember me telling you that we were worried that she may be some psycho axe murderer and her family were worried we may be just a "scam".<br />
Meeting the genuinely beautiful Holly Detman could not have been any different.<br />
She flew over to give Amelia a big hug and a photo album she had handcrafted herself.<br />
<br />
No ulterior motive.<br />
<br />
Next she flew over to attend the BrAshA-T gala night to help raise funds to find a cure for Ataxia Telangiectasia.<br />
<br />
The last time we saw her she stayed with us.<br />
She wanted to attend the final Amelia's Project Gala night.<br />
<br />
She has now become one of my closest friends and Scott, Amelia, Tom and I consider her as part of our family.<br />
<br />
What people do not know is that Holly and Marcus have been desperately wanting a child since long before we met them.<br />
<br />
Today they announced they are pregnant.<br />
One little tadpole swam with all it's might to stay and grow in Holly's body.<br />
<br />
We are beside ourselves excited for them in this house.<br />
<br />
This is a couple that truly deserves the gift of a child.<br />
It is going to be the most well loved, well cared for little miracle.<br />
<br />
Congratulations Holly and Marcus.<br />
<br />
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xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-37977665882795834652014-08-21T19:23:00.003+10:002014-08-21T19:34:31.156+10:00Bored<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;"><span style="color: black;">Hello friends,</span></span></span><br />
<br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;"><span style="color: black;">I am bored and feeling yuk with a full on head cold, so I thought I would bore all of you too.</span></span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;"><span style="color: black;">These a "quotes" that have made me laugh, or just really think recently.</span></span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;"><span style="color: black;">I may actually do a post about Miss Amelia one day !!! </span></span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;"><span style="color: black;">Enjoy :) </span> </span></span><br />
<br />
<br />
<br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">Do not ask your children to strive for extraordinary lives.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">Such striving may seem admirable. but it is a way of foolishness.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">Help them instead to find the wonder and the marvel of an ordinary life.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">Show them the joy of tasting tomatos, apples and pears.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">Show them how to cry when pets and people die.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">Show them the infinite pleasure in the touch of a hand.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">And make the ordinary come alive for them.</span></span><br />
<span style="color: blue;"><span style="font-family: "Courier New",Courier,monospace;">The extra<span style="background-color: blue;"><span style="background-color: #f3f3f3;"></span></span>ordinary will take care of itself.</span></span><br />
<br />
<br />
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xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-25152668081884439192014-08-20T16:38:00.002+10:002014-08-20T16:38:42.712+10:00Thank youHello everyone.<br />
<br />
Thank you for your response to my previous blog.<br />
I should not be surprised how many are silently dealing with depression.<br />
<br />
I should add that another "double whammy" is the changes in society and expectations on individuals.<br />
Pressures from work, "keeping up with the Jones's", parenting skills, how you SHOULD be, how you SHOULDN'T be ........ etc etc etc etc can be very overwhelming.<br />
<br />
Writing that piece was very draining and has made me sit back and think.<br />
I need to continue writing the book again. <br />
<br />
I came across this on the Internet and think it is very powerful from so many different angles.<br />
The words, not just because of WHO said them, should be a guide in how to live life.<br />
It only goes for 1 minute.<br />
<br />
<br />
<a href="http://www.sunnyskyz.com/happy-videos/1033/The-Most-Beautiful-Tribute-To-Robin-Williams-And-It-s-Just-A-Minute-Long#M7OLky9AJQ0rvyX3.01">http://www.sunnyskyz.com/happy-videos/1033/The-Most-Beautiful-Tribute-To-Robin-Williams-And-It-s-Just-A-Minute-Long#M7OLky9AJQ0rvyX3.01</a><br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-86402721816612861842014-08-18T00:11:00.000+10:002014-08-18T00:11:20.724+10:00DepressionHello dear friends.<br />
<br />
I am going to attempt to write a piece on something very close to my heart.<br />
It comes from many experiences from those around me, both past and present.<br />
It comes from my own experiences. <br />
<br />
I have battled with the decision on whether to write about this or not, for a few days now.<br />
<br />
It will not be correct to many, but it is to me. <br />
<br />
The death of the very famous Robin Williams has rocked many of us.<br />
He was like the "uncle" you wished you had.<br />
He was kind, a genius in comedy and someone that appeared to love everyone.<br />
<br />
He made everyone laugh with his humour.<br />
It is like we all knew him.<br />
<br />
He is the LAST person to have depression......surely? <br />
He had all the money in the world, a beautiful family and a successful career that any actor would dream of.<br />
Surely he could fix his depression with the rest of the world at his feet????<br />
<br />
These past few days, I have read many things that made me question whether people really understand depression.<br />
I am talking about REAL depression.<br />
The one that is with you for life and not brought on by hardship, a difficult situation, a period of time that will improve.<br />
I want to talk about the one that means that your brain is incapable of releasing the happy hormones on a daily basis.<br />
The depression where the chemical imbalance in your brain means daily life is a struggle.<br />
For some people it can be for short periods at a time....others longer periods.<br />
As with everything in life, each individual, with depression, is different.<br />
<br />Some people seek therapy and this can sometimes help.<br />
Some learn to create their own coping mechanisms.<br />
Some just keep putting one foot in front of the other to try and continue the daily grind.<br />
A lot of people with depression always have a smile and function at what is considered an acceptable level.<br />
<br />
You may never know that your best friend suffers from it.<br />
<br />
What is incredibly interesting is that most "outsiders" would never know what these people are dealing with.<br />
It is who they are and many have learnt to "mask" a difficult period.<br />
<br />
The difference of long term, or life long depression compared to a shorter term depression is these people know it will come back again.<br />
When and where is impossible to determine.<br />
You just know it is there.<br />
<br />
There is also the "situations" that can cause depression like anyone else.<br />
A double whammy so to speak. <br />
<br />
For outsiders to say "move on", "get over it" or "cheer up" is not helpful.<br />
It is the brain controlling it through the release of hormones.<br />
Medication can help but it is also a matter of finding the right one and the right balance.<br />
<br />
The best quote I read this week was from another famous actor... Ricky Gervais.<br />
<b> <span data-ft="{"tn":"K"}">Telling people with
depression to "just snap out of it" is about as useful as telling people
with cancer to "just stop having cancer".</span></b><br />
<br />
Society and individual people in general are confused about how to handle people in a difficult period.<br />
I cannot answer how myself.....<br />
except to say be there.<br />
message even if they do not repond.<br />
call even if they do not answer.<br />
do not pressure, just say you are there and you care. <br />
be non judgemental and show them that you are.<br />
understand that they are still a person who is worthy of your time.<br />
show them that.<br />
<br />
Depression is quite often hidden from others due to the silent negative stigma towards it.<br />
People look at you differently.<br />
People treat you differently.<br />
People are wary.<br />
Employers are hesitant to treat you equally.<br />
Friends think you may not be as much fun.<br />
<br />
To search for the positives in every difficult situation is paramount.<br />
"oh. I am tired....... Maybe my body needs to rest so I can function better in the future".<br />
"Tomorrow is a new day".<br />
"We will stay home today. It will give me some time with family or catch up on movies, TV shows or sleep".<br />
There is a positive affirmation in everything.<br />
<br />
Lots turn to alcohol and drugs.<br />
The endorphins they bring, even though short, are a welcome relief.<br />
A feeling of happiness, being numb and in a different "head space". <br />
But that only exasperates the depression.<br />
It adds to the feeling of sadness when you come down off them.<br />
But it can be hard to get to the point of realising this.<br />
<br />
I can only guess what it must be like when you get to the stage where suicide is the only answer.<br />
Some call it "selfish" or being a "coward".<br />
I can only imagine it is when someone is at the bottom of a deep, dark well and can see no way out.<br />
They have tried so many options.<br />
Had so many negative interactions with those around them and possibly see themselves as a burden.<br />
The feelings of pain within themselves for not only themselves, but those around them must be overwhelming.<br />
<br />
People live with depression everyday.<br />
It is not a contagious disease.<br />
<br />
I have had many people get cross with me or criticise the different facets of my own depression.<br />
A lot of us "joke" about the things that actually personally upset us.<br />
Subjects we just cannot move on from.<br />
Sometimes you go through a positive phase of thinking and then BAM the negative kicks in. <br />
Depression can make you say and think things that are not sensible.<br />
<br />
My weight gain would be my own personal example. <br />
I hate my body.<br />
That is just something I have grabbed hold of and cannot let go of.<br />
<br />
I do not know all there is to know about depression and some may disagree with what I have written.<br />
I am just grateful that we live in a house where people know they are welcome to just come and talk.<br />
We are lucky to talk about depression with those around us suffering from it.<br />
It is not all negative talk. A lot of it is humour.<br />
You have to laugh about it sometimes! <br />
<br />
I am accepting of my own depression and having those close to me just being there when I am sailing through a difficult patch.<br />
<br />
Now to plan my 40th Birthday.<br />
It will be at a massive trampoline warehouse and everyone has to wear superhero constumes.<br />
It will be hired out just for me and those I love and care for.<br />
<br />
That is sensible thinking.....right ??!!<br />
<br />
xxx<br />
<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-64054020339906516392014-07-30T17:52:00.003+10:002014-07-30T17:52:44.755+10:00Independence, aliens and bumsHello Friends.<br />
<br />
A conversation a few months ago between Amelia and myself....<br />
<br />
"I want to go on a camp" said Amelia.<br />
"Ok. But what are you thinking because your school does not do it for a few years" I answered.<br />
"Some of my friends go. They go on day trips during school holidays too" she says.<br />
" I will look into it" I said.<br />
<br />
At the time I was thinking " absolutely no way", "this will NOT be happening" and "treat this delicately with Amelia".<br />
My own dad came around and after being told the details from Amelia stated, "You won't be going to that sweetie".<br />
(he knows what we are like!)<br />
<br />
WHY?<br />
<br />
Whenever you have a child with a disability all the support networks speak about is "respite".<br />
Respite, respite, respite.<br />
We do not need respite.<br />
<br />
Scott and I do not need strangers to look after our child while we have "timeout" or time with Tom.<br />
Scott and I cope beautifully giving each other "timeout".<br />
We have my dad. That is enough "respite".<br />
<br />
There is an organisation that offers quality time for disabled children....<br />
It is not just respite for the parents. <br />
<br />
Amelia attended her first camp last weekend with this organisation.<br />
It was not our decision.<br />
It was hers.<br />
<br />
After attending 2 day trips last school holidays and assessing whether it was "suitable", Amelia pushed and pushed to go on a camp.<br />
<br />
She is "growing up".<br />
<br />
After much thought, I realised that she needed time away from us.<br />
She needed time away like other children her age.<br />
She needed to gloat and talk about her "adventure".<br />
<br />
My concern is and has always been that "no one can care for her like we do".<br />
<br />
Amelia cannot do anything for herself.<br />
She has many fears and worries.<br />
WILL these people look after these attributes of her personality? <br />
Will they shower and toilet her appropriately?<br />
Will they make sure she sleeps soundly?<br />
<br />
Amelia is OUR child and we will look after her appropriately.<br />
Will they ?<br />
<br />
Amelia went and loved it.<br />
There was one complaint about "sleep time".<br />
It is something we will be following up.<br />
It is something we will be ensuring before she goes on any more camps.<br />
Amelia wants to attend more.<br />
<br />
That has to be a positive result........surely.<br />
<br />
She had a make-up beauty party, made cookies and went to an animal sanctuary.<br />
Amelia spent time away from us and our house.<br />
She connected with the "carers".<br />
<br />
It has been a huge learning curve for all of us. <br />
_____________________________________<br />
<br />
Tom's school report came home recently.<br />
He is "above average" in 80% of his subject areas.<br />
In most areas he is 6-12 months in front with his learning.<br />
<br />
THAT IS HUGE.<br />
<br />
Tom is also having nightmares.<br />
At approximately 1am he wakes up and thinks that "aliens" are coming to get him.<br />
It is very upsetting, but also very disrupting to the household sleep routine.<br />
We are all very tired.<br />
<br />
Scott suggested going on the Internet and finding how to "power" one of his teddies to look after him.<br />
"Yeah. Like that is going to work!" he responded.<br />
I laughed at Scott thinking Tom would believe that but also laughed at the irony of that fact that "aliens" are coming to get him.<br />
______________________________________<br />
<br />
Finally the next interesting news in our household..<br />
<br />
I have to endure a colonoscopy next week.<br />
In lamens terms that is "a camera up your bum".<br />
<br />
I have begun bleeding from an area where the only substances should be brown<br />
(or blue if you have eaten cake with blue icing - take that from experience!).<br />
<br />
After an investigation (no description necessary) it has been decided further investigation is needed.<br />
<br />
Most people would not be concerned BUT we are talking about US.<br />
The people who have EVERYTHING happen to them. <br />
Some of you are following my beautiful friend and her battle after bleeding from the bowel.<br />
Why would WE be any different? <br />
<br />
We have great luck in this house......NOT.<br />
<br />
Will wait until next week<br />
BUT<br />
There is that small (MASSIVE) worry............<br />
<br />
__________________________________<br />
<br />
Amelia is "freaked out" by my procedure next week.<br />
I decided to try and alleviate the worry by getting her to imagine something.<br />
You MAY find it funny.....<br />
<br />
Imagine the people that are doing the procedure next week.<br />
<br />
Imagine saying in Kindergarten.....<br />
"WHEN I GROW UP" ........<br />
<br />
"I am going to put a camera up peoples bums and look at their poo".<br />
<br />
Enjoy your dinner everyone.<br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-69218103706882689392014-07-23T20:55:00.001+10:002014-07-23T20:56:26.557+10:00Searching for PositivesHello Friends.<br />
<br />
Tonight I have been reminded about the fact that a positive can be found in EVERY situation.<br />
<br />
The recent disaster of the MH17 plane that was shot done was a shock to us all.<br />
The details of passengers and the wide range of ages, nationalities and humans living "their life".<br />
<br />
One story that has played heavily in Australia is about 3 children and their grandfather.<br />
He was returning with the 3 children to Perth, Australia, aged 12, 10 and 8 from Europe, while their parents had a few days alone.<br />
Those children and the grandfather are now dead.<br />
<br />
The parents released a "statement" today that told all what we must be feeling for them already.<br />
It is impossible to imagine.<br />
It is incomprehensible.<br />
<br />
I was very open at the beginning of this blog........while we were waiting to see whether Tom had Ataxia Telangiectasia.<br />
I said "If he has it too then I will create an amazing life for both and nurse them to my utmost....until the end. Then catch you later".<br />
<br />
Tom does not have A-T.<br />
I still dread the way I will be after we say goodbye to Amelia.<br />
Tom will be my lifeline. <br />
<br />
BUT we have time.<br />
<br />
We know there is an END.<br />
<br />
We can treat life differently and appreciate each day in a new light.<br />
We can create and do with "this" as our motive and understanding. <br />
We can have "no regrets at the end".<br />
<br />
That is my positive.<br />
<br />
We have time.<br />
<br />
These parents had no warning or time to ..............<br />
I don't know.....prepare maybe.<br />
<br />
But they have lost all their children and a treasured father, father-in-law and grandfather.<br />
<br />
They are just.....<br />
Gone.<br />
<br />
Please read this link and appreciate what you have... <br />
<br />
xxx<a href="http://www.mamamia.com.au/news/mh17-maslin-family-statement/">http://www.mamamia.com.au/news/mh17-maslin-family-statement/</a><br />
<br />
xxx<br />
<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-18620050411737861492014-07-16T17:33:00.001+10:002014-07-16T17:33:58.853+10:00Hard............. (not about penis's)Hi Everyone.<br />
<br />
A few discussions tonight, so if you can "keep up" congratulations.<br />
<br />
This morning I asked Scott to have a "sleep in".<br />
I could see that the wear and tear of school holidays AND children being home sick at the start of term 3 was taking a toll on him.<br />
Amelia and Tom returned to school today.<br />
<br />
Before anyone berates Scott, lets look at "our morning"...........<br />
Wake both kids up (they are getting older and no longer wake up ultra early).<br />
Physically get Amelia out of bed and take her to the toilet.<br />
Emtionally support Amelia as she prepares herself for the day...<br />
"When do I leave?"<br />
"When do I get Home?"<br />
"What happens today at school?".<br />
<br />
Then we need to vomit.<br />
Yes that is the NEW thing.<br />
<br />
This morning as she was vomiting, (after not once over school holidays) , she finishes and says "Oh good. I will be ok today now".<br />
Interesting.<br />
Anxiety?<br />
Yes. I think so.<br />
<br />
Tom?<br />
Needs to wake up and do a "finger prick" to check his blood glocose levels.<br />
"My tummy hurts. I need to stay home today".<br />
<br />
Anxiety? Yes. <br />
<br />
He then needs to have a measured insulin dose....based on his insulin levels.<br />
Arguments ensue....<br />
"NO, not now"...<br />
"In a minute."<br />
<br />
(we have to leave for school in 10 minutes and you still need to have breakfast and get dressed).<br />
<br />
Mornings in this household are great!<br />
To keep happiness, to keep positivity, to keep happy "self confidence" is hard !!!!!<br />
<br />
From what I understand many households are similar.<br />
<br />
To be continued.......<br />
Kids Need Dinner.<br />
xxx<br />
<br />
<br />Amelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0tag:blogger.com,1999:blog-4850594562378015806.post-30344264045262566582014-07-07T16:53:00.000+10:002014-07-07T16:53:32.906+10:00Tom - Diabetes CampHello everyone.<br />
<br />
Tom and I have just returned from a "Diabetes Camp" 2 hours away.<br />
It was something I begrudgingly applied for.<br />
<br />
Why?<br />
<br />
It is something SO FAR out of my comfort zone.<br />
To leave MY house, MY shower and MY bed is HUGE !!!<br />
But I knew the benefits for Tom were going to be MASSIVE.<br />
I knew that he would feel "normal" there.<br />
I knew that he would make friends with other children that need to check their blood glucose levels and need to have needles daily.<br />
<br />
It did not stop me from asking Scott many times last week if he could go instead of me!<br />
<br />
I REALLY struggled to get through the 2 night stay.<br />
I was definitely not "myself".<br />
<br />
After 24 hours though, Tom and I had begun to make some very firm friends.<br />
For Tom it was easy......he is a kid!<br />
<br />
We both laughed when we walked into the dining room on the first night to discover 25 children giving themselves finger pricks and needles.<br />
<br />
I will never forget listening to a discussion between two 7 year old girls...<br />
"Are you the only one at your school with diabetes?"<br />
"Yes"<br />
"Me too. Lets go play".<br />
<br />
For me, I made friends after the kids went to bed.<br />
Apparently I am part of the "rebel" group!!<br />
(surprise, surprise!)<br />
This was the group that snuck out to the "designated smoking area".<br />
The following night we all met there with alcohol !<br />
I was very "left out" when I discovered they had all stashed it sneakily into their bags when packing to come.<br />
I , for once, had not!<br />
<br />
On the way home today, I finally relaxed.<br />
Tom and I discussed all that we had learnt.<br />
His ability to assess all of the children and information astounded me.<br />
<br />
All weekend I had battled with many thoughts.......<br />
<br />
1. Diabetes is not as bad as Ataxia Telangiectasia. Get over it.<br />
2. OMG. What are they talking about ? Why do I not know about this?! <br />
3. Wow. All these parents know A LOT about diabetes.<br />
4. Shit. I researched A-T so much. Why have I not researched diabetes to the same extent?<br />
5. God, I am so fat.<br />
6. Carb counting? What the fuck is carb counting?<br />
7. Poor kids ? Ummmmmm.....there is SO much worse......<br />
8. Your kid is experiencing a "hypo" ?! They are 1.3. Shit. Tom has never been that low. That is scary.<br />
9. Exercise, adreneline, food, sickness, insulin dose....... so much affects their Blood Glucose Levels.<br />
10. This bed is SO uncomfortable.<br />
11. Oh dear. Most children have a "hypo kit" in their hands. I did not even pack jelly beans.<br />
12. You need to change your medical team. You SHOULD know about THIS.<br />
13. Tom is asking about "carb counting".<br />
14. Tom gives himself his own needle......YAY!<br />
15. Tom talks to "new best friend" about nightly BGL reading.<br />
16. I am sooooooooo cold.<br />
17. Information about a camp next year for all of these children.....without us parents. "They will make lifetime friends" they say. "they will learn to understand, accept and live with diabetes. They will have fun and do activities like anyone else" they said.<br />
<br />
"Sign him up" I say.<br />
<br />
The rebels have organised to stay nearby........to smoke and drink!<br />
<br />
Now to go shower.<br />
There was NO WAY I was stepping foot in those showers !!!!!!!!<br />
<br />
xxxAmelia's Projecthttp://www.blogger.com/profile/05958859274903890193noreply@blogger.com0