2011 Part 3

In the past 12 months I have become a totally new person.

My future, our future, the future of our family is now different.

It is expected that when a person gets married and has children, there is a set pathway for the future.

Amelia's diagnosis of Ataxia Telangiectasia 12 months ago has guided us off the normal pathway.
We now have an 8 year old daughter who cannot do homework or after school activities. She is unable to attend school everyday, ride a bike or dress herself.
Any independence will be slowly taken away from her and she will become totally reliant on those around her.

My degree in Early Childhood now appears obsolete because I am needed everyday.
Amelia needs me everyday......for everything.

The rollercoaster of emotions are now my friend.
I have learnt to "roll" with it rather than fight it.

Amelia will not be calling us to get picked up from the pub.
She will not be getting married and having children.
We will be grateful if we still have her in her twenties.

12 months of accepting everything has changed.
Our future is now very different.

BUT ......
and this is a very BIG but.......

We have learnt the importance of each day, each achievement and every smile.
We have learnt the true meaning of smiling, laughing and creating memories.
We have learnt that "life" is what we make it and can be amazing no matter how short.

You suddenly realise that if it all ended tomorrow........would you be happy with the life that you lived ?
Would your husband, partner or friends have happy memories of times that they spent with you ?
Would your children remember dancing with you or that you were always doing jobs?

In the past 12 months I have taken on the responsibility of creating an amazing life for our family.
Small things, big things.....very,very important things.

No more negativity and whinging (although they still appear occasionally).

As many of you know, a beautiful friend of mine died recently.
She had no warning.
And she was just beginning a process of self discovery.......finding real happiness.
We have been given warning.
It is not fair but we have been given the chance to appreciate life from a new perspective.

I do not have time to waste worrying about being self concious anymore.
I do not have time to waste wondering what people think of me anymore either.

There is something so much more important in my life to care about.

Living.

Sunny days, hearing the rain, a mocha coffee, a cuddle or finally seeing Breaking Dawn Part 1.
It all takes on a new meaning.
An appreciation that life is short and to enjoy every single moment.

I want to have fun.
I want Amelia, Tom and Scott to have fun.

One of the biggest realisations in the last 12 months though is the relationships with others around us.
Friends, family, neighbours, strangers, local shop owners, teachers and other parents.

Friendships, conversations and relationships are taken to a new level.

I cannot explain the deep, powerful bond I feel with so many of you now.
Some people I did know before and some I did not.

The protective shield I often feel surrounding us is so overwhelmingly strong.

The other families who have been handed the curse of A-T have become friends, an information source and a sympathetic ear.
Each child is so different but with so many similarities.
All around the world we lead different lives but are ALL watching our children deteriorate in front of us.
But a lot of us speak of the appreciation of everyday.

And finally.......
In the last 12 months I have had one very firm thought.

Amelia Grace Nicholds WILL have the most amazing life.
She will be surrounded by positivity and happiness.
I WILL NOT let her feel the pain and sadness that we feel around her.

No regrets at the end.

.....to be continued.......

xxx

2011 Part 2

I have been wanting to continue my summary of 2011 for well over a week but have been so sick in the past 7 days.
I guess, in a way, the year has caught up with me and all of the stress and negativity has taken over my body.
I am still not well but at least I can get up out of bed now.

Tonight I would like to list all of the amazing experiences that people have organised for us.
Hopefully I remember all of them.
There has been a lot.
Every single one has left a wonderful memory that will stay with us forever.

It all began with a gift registry set up by the very kind Shannan.....

1. Build a bear (we came home with 5 !!!!).
2. Hairspray the musical with a group of gorgeous ladies. We also met the two main cast members afterwards.
3. The Herald-Sun did an article on Amelia. It was written by Daniel Hoy.
4. Angie Baxter, a professional photographer, took the most amazing photo's of us. These photo's are now used for "Amelia's Project" and another media article used one later in the year.
5. Take 5 magazine did an article on "our family".
6. Met some beautiful women from "Ebony's will to walk". They gave us advice on setting up Amelia's Project.
7. Set up an Amelia's Project Committee.
8. The very first Amelia's Project meeting. So many people and I was a shaking mess. Jemimah was renamed the "power machine".
9. Melbourne Zoo. The most memorable experience of feeding giraffes, a seal and lions.
10. Our first A-T clinic in Brisbane. We learnt so much about Amelia's new diagnosis and came home with our first feeling of HOPE.
11. Our first circus. Gorgeous Anna took the kids and I to see a spectacular show.
12. A very fun evening for the "Royal Wedding".
13. 350 people came to MacDonalds between 5:30-7:30pm on a Tuesday night. The most they have ever seen for a fundraising night. $1000 was donated by Macca's and the beautiful Kelly also did a HUGE raffle.
14. We got our first fishtank. We have managed to kill all of the fish, except one. So we have decided he is the winner of "survivor!!!!".
15. Met the beautiful Holly for the first time. She read about us in New Zealand and insisted on flying over to just meet us. Shell came out to lunch with us just to make sure she was not an axe murderer !!
16. Amelia begins a fortnightly painting class with a professional artist. She wanted to donate her time and expertise to Amelia.
17. Scott, Myff (Amelia's special physio) and I fly to Brisbane for a 1 day conference on the research occuring into A-T.
18. The Circle TV show has me on for a makeover. They also question me on Amelia and A-T.
19. The Amelia Night at our local RSL. HUGE. $52,000 raised in that one night.
20. Our local fire brigade holds a sausage sizzle and raises $1000.
21. Our local pharmacy holds a sausage sizzle and raises $750.
22. Danny and Donna take us to the most magical Fairy Park far, far, far away.
22. Donna and Shane treat both kids to a Harley ride.
23. Have our first trip to the snow and are given an awesome cabin to stay the weekend in. Some awesome friends also chose to come with us.
24. Attend our first Melbourne Brashat Gala Night. We hear people speak about research into A-T.
25. Both kids are spoilt at the local Fire Brigade Station and given a "trauma bear" and certificates to be volunteer fire fighters.

26.DISNEYLAND !!!!!! Oh and Las Vegas and Hawaii!

27. The most unbelievably beautiful bathrooms are created for our home while we are in America. One that is easier for Amelia to shower in and a spa bath to relax and soothe her tired body.

28. This week "our" limousine driver from "Aberlene limo's" has insisted on picking Amelia up at home time from school. He has asked her to choose 9 friends and they get to drive around in this luxurious car and returned to our house after 1 hour.

We have had an ipad and a walker delivered anonymously to our front door.

Chocolates, wine and flowers are a happy discovery when I am having a sad day.

The donations collected and offered for the Amelia Night at the RSL were unbelievable.

Many people arriving on our doorstep and insisting on giving us money.
People sending money and gifts in the mail.

(If I have forgotten anyone or anything I am very, very sorry. I have written straight from my diary!)

Everyone also began sleeping with onions next to them and True Blood became the TV show to watch for vampire porn.
Everyone heard my opinion/s on life, friends, accepting support, grieving and God.
I have not yet written the one on "reaching orgasm" as I promised !!!

I will continue my summary another night but I will leave you with a rather funny image........
After showering Amelia the other night, she insisted on running out to Scott.....naked.
She turns around so that her back was facing him.
She then began wiggling her bottom and singing
"I'M SEXY AND I KNOW IT !!!!!!!!!!
WIGGLE, WIGGLE, WIGGLE, WIGGLE
YEAH !!!".

Bloody Hysterical !!!!!!!!

xxx

2011

2011.

In possibly my lifetime this will be the biggest 12 months I will EVER experience.

I do not think that I am exaggerating in making this statement.

Tonight, I can only write from MY point of view.
Not Scott's, Amelia's or Tom's.
Just mine.
I am the only one sitting and writing.

So I will begin a summary.......

On December 6th 2010, Amelia was admitted for an overnight visit to the Royal Children's Hospital.
Our concern for her recent decline in mobility and speech meant that her paediatrician wanted to run some tests.
The overnight visit became a 5 day visit.
Tests, trauma and lots of emotions followed.

December 10th 2010..... we were told Amelia did not have cerebral palsy (as thought for the previous 4 years) and all tests were pointing towards Ataxia Telangiectasia or A-T.

Scott and I questioned the 9 people in the room on what A-T was ...........
" a disease that eats away at the brain and immune system. She will be lucky to survive to 20".

Shock set in.
I will remember where I was sitting in that room forever more.

The uncontrollable sobbing lasted for days.

My FB friends, who had been through the whole diagnosis with us, began searching for help.
Nutrition, vitamins, research.......anything.

People came from all directions, but mainly online.
Many, many messages.
Many, many presents.
Lots and lots of meals.
I did not cook dinner for 5 weeks.
But I also couldn't.

Learning about A-T and accepting that your 7 year old daughter has it........well it is a very difficult process.
I think we will be processing it forever.

For many nights I lay awake.
I cried a lot.
But I discovered that writing my feelings on FB made it all a little bit easier.
By writing my thoughts, I worked through many difficult stages.
I was also able to sleep because it was like I had "got it out of my head".
I am still writing now.
It is theraputic.

My beautiful cousin set up this blog.
I transferred all of my documents over.
They are really hard to read.......very raw and emtional.
But also clearly show my shift from negative to positive.
Our appreciation and love for Amelia.
My opinion of what an "amazing life" can and should be.

Now, 10 months later, there are 158 posts.
It has been viewed over 21,000 times.

Our gorgeous Amelia still has A-T.
She will always have A-T.
But the change of perspective, the change of attitude has changed the way we treat every day.

We appreciate every smile, every giggle, every dance.

We hope that a cure will be found in her lifetime but we are also realistic that it may not be.
We will contribute as much as we can to finding a cure but will also make sure that she has the most amazing life in the time that she is here, if one is not found.

My motto : NO REGRETS.

I want no regrets.
I try my best every single day to have a smile, have fun and enjoy every single minute.

We can be proud of the lives that we are and have created for ourselves as well as our children.
Happy with the end result.

It is interesting how your whole world changes when you change your attitude.
I laugh when I remember my "petty whinging".

Nothing will ever, ever compare to Amelia's diagnosis.
We are just very lucky that we have been given time to make and create memories.
To love and cherish and appreciate.

I will never forget the phone calls, text messages and online support during this horrible time.
I will never forget lying in the very uncomfortable fold out bed at RCH holding Amelia's hand and wondering what the future had in store for us.
I will also never forget the strength that came from deep down within me to question any doctor that approached us and demand explanations and answers.

I began to learn that I was going to need to fight for Amelia and try to find some confidence to get her the very best of help........

.........to be continued tomorrow.............

xxx

To be in my shoes........

This letter was written on an Autism website.

I can wholeheartedly relate to it........

Dear Parents of Special-Needs Children I’ve Taught In the Past,

I need to make a big apology. You see, I’ve been teaching now for fourteen years, but I have only just recently joined your ranks.

I didn’t know. Not even a clue. I thought, mistakenly, that having two special-needs children in my family made me more sensitive to your needs as a parent. It didn’t. And I’m so sorry for operating under the assumption that I did. I’m not attempting verbal self-flagellation here. I meant well. I knew a lot about autism and some about other special-needs conditions. I did care about your child. And I did want to do right by him. But, like a lot of teachers who Just Don’t Get It, I thought doing right by him meant giving him extra time on assignments and not allowing him to fail my class. I thought being extra nice and seating her at the front of the room was what you needed from me.

But you needed more. And I didn’t understand that. You needed communication. A lot of it. You needed me to understand your depth of worry. You needed me to understand that, if you’ve met one special-needs child, you’ve met one special-needs child. You needed me to understand that I was teaching your child, not an I.E.P. You needed to know, not assume, that I would go out on a limb to make sure your child’s needs were met all over the school and not just in my classroom. You needed to not worry that, when your back was turned, I was still doing everything that I promised as well as thinking of better ways to meet your child’s needs. You needed to talk about your child in meetings and not worry about the clock.

I know better now. In just a few months, I am going to be placing my special little boy into the hands of the public school system. Because he is non-verbal, I will have no way of literally knowing how his day went, if he is being treated well, and if those to whom I am entrusting his care really do care about him. This kind of fear is paralyzing. And more so because I know just how little training (read almost none) that most of the staff in a public school have in dealing with children like my son. They, too, will mean well. But they won’t know. They won’t get it. I now know why you carry The Binder of Epic Proportions to every meeting. Mine is getting bigger by the day.

I look back now at all of your children and wish that I had picked up the phone more, written quick notes home more often, challenged your child more often rather than less, and make you feel certain that someone else loved your baby in your absence. For that, I’m sorry. I promise to do better for those kids in the future. I promise to not assume anything about your child’s unique situation and needs. I won’t just react to bullying of your very different child. I will actively be on the lookout for it. I will remember your child and her possible confusion on activity bell schedule days. I will take more time each day to get to know her. I promise to do my best to push, cajole, educate, and even take to task my colleagues who don’t get it in the years to come. I pray that teacher training will improve in the future and that my son will reap the rewards of that. And I hope that I am just as patient, kind, and understanding with his teachers and schools as most of you were with us.

And those of you who weren’t? I get you too.

Sincerely,

Your Child’s Former Teacher

Emotional rollercoaster Number 432321

Today I took Amelia to look at a "special school".

It was hard.
Very hard.

It is something that you never expect to do when you are pregnant with your first child.

In front of Amelia I was happy and relaxed.

Inside my mind I was confused and emotional.

I wanted to cry but could not exactly work out why.
So I just swallowed lots.

I wanted to show Amelia the school.
I wanted to give HER the chance to see others similar to her.
I wanted HER to tell me whether 1 day a week next year is a good idea.

I explained this before we went.
She was genuinely excited !!!

EMOTION 1 : for me...... being there with her.

We were shown the classroom Amelia would join.
She was invited to participate in the activities.
Initially she chose to observe but as I was leaving to have a cuppa she began to join in.

EMOTION 2 : Observing the other children in the room.

The smile on her face was huge.

EMOTION 3 : Realising that she was one of them.

This emotion hung around for a while.......

Acceptance can be difficult.

Amelia and I love her "mainstream" school and she will not be leaving it. But I think Amelia needs to be given the chance to interact with others like her.
To become familiar with an environment that may be full time in the future.

All of the children were intellectually normal but their physical skills were prohibiting them from functioning at a "normal" level.

They were social towards Amelia.
The staff were extremely welcoming.

EMOTION 4 : Accepting that your child would be "happy and comfortable" in this environment is confronting.

But it is also comforting.

Seeing other children struggling but still enjoying themselves was obviously attractive to Amelia.

Next week she is going to spend a few hours there again ........ without me.

To give you an idea of what "Amelia thought"........
When I came back to see how she was going she spoke some words.
Everyone thought she said "Don't forget me".
Knowing her language better I understood what she said.

"Don't get me".

She didn't want to leave.

Even though I need a REALLY good cry right now I know that I have been strong in investigating something that is good for Amelia.

xxxx

12 months ago.....

This week will be 12 months since Amelia's hospital visit.

5 days of tests that changed our world forever.

We were admitted on December 6th and discharged on December 10th.

On that final day we were told to "go home and cherish what time we had with her".

In the past 12 months so many amazing things have happened BUT I will never, ever forget that week.

Staying in hospital with Amelia the entire time was difficult.
The showering, toileting and food.
But it was nothing compared to what happened to Amelia.

Holding my child down for many tests and then slowly hearing information that will devastate and change anything I ever thought.

The tears were endless.
I told Amelia it was because I was tired.

My memory is not very good, BUT I will remember every single moment of those 5 days forever.

When we arrived home I did not cope well.
The tears would not stop and my body felt lifeless.
I wandered around the house in a haze.

Today we set up our Christmas decorations for 2011.......
Amelia has not stopped asking to do it for 10 days.
Last year, she also insisted we decorate after we arrived home from hospital.
Amelia had no idea about what A-T was.
She just knew she had it.
Scott and I had to dig very deep to find the energy and happiness Amelia wanted to get ready for Christmas.

I was going to also mention tonight about all the wonderful things that have occured in the past year.......
But I can't.

I think I need to just work through my memories.
Remember the week we were told our 7 year old daughter had a terminal illness...........

xxx

Tastes good

To really confuse my body, I joined the family for dinner tonight.
They were ordering Chinese and I decided I needed a treat.
Even though I have lost 5 kg in 11 days, I still loved every single mouthful.
The taste is so powerful when you have been deprived of any taste for almost 2 weeks (and watching others enjoy it).

I would appreciate it if you didn't tell anyone....... but I had 4 chocolate balls, 2 hours later!!
OMG !!!! They were awesome.

Back on the diet again tomorrow.

I have not blogged very much recently because I have been feeling flat and unhappy.
Unfortunately my survival depends on sweets, chocolate, coffee, tea and anything I want to eat.
But that is also why I managed to reach a very heavy weight.

Amelia has also been unwell and sad.
Except she HAD to go to school on Friday to "present" her project.
Something that she put so much effort into.
She was so "proud" of her masterpiece.
The staff also had her making chocolates on Friday, so she was happy at the end of the day.

Tom?
An issue I have working through recently is that he is going to school next year.
After my emotional breakdown at the first school orientation, I have come to realise that he has helped me stay positive this year.
Instead of dropping Amelia off at school and then coming home depressed, I have still had our other child in my full time care.
He is so talkative, active and creative, I have had to "hold it together" for him everyday.
I felt like I was going to lose my "little buddy" who has helped keep me sane all year.

But there are also other interests in my life that will assist me to continue on my positive path.
I am fanatical about an "organised" house.
I feel that when my house is organised I am relaxed in my mind.
With Tom at school I will not have an "imaginative" area set up in EVERY room of the house everyday.
It has been fascinating watching him move between building, hairdressers, a resturaunt, a fishing boat etc etc each day.

I suggested to Scott that I wanted a labrador puppy.
A new friend.....a baby to look after......a friend for Scamp.

Some of you may remember our Barney.
He was our labrador for 7 years.
He was our first child.
We adored him.
Barney was almost human in the way he understood everything I said to him.
He laid with me when labour began with Amelia and then again with Tom.

I cried for a very long time when he died.

I thought a friendship like that would help next year.
But I also believe Barney was "one in a million".
It would be very difficult to get such an obedient, loving, loyal dog like him again.

I thought about pursuing the idea of writing a book, getting some paid work and maybe just having some "me" time.
But will "me" time send me into depression ?

I have begun thinking about Amelia for next year too.
Grade 3 gets much harder.
At some stage I am going to have to start seriously thinking about what is best for her.

It is so hard because I do not know what is best for her.....

At what stage do I begin intergrating her to a school where everyone has similar strengths and weaknesses as her?
A school where there is two staff members to nine children.
There is one nearby that has a class where everyone is her age. They are verbal, social and 60% of them are still walking, 40% are in chairs.

I absolutely adore the school she is at now.
It is the one Tom is going to next year.

But when is the right time to start getting her used to and comfortable with a "special school" ???

Amelia has a degenerative disease.
She is going to get worse.
She is already getting worse.

I do not want to move her abruptly when she is already struggling, coping with the change within herself.
Adjusting to ANY new school is hard.
I want to do it once or twice a week over at least 2 years.

I think that I may need more Lindt chocolate now.
I have got myself upset.
But as always, it is another issue I need to work through.

And I will.
I am a tough cookie !!

Thank you for listening.

xxx