Tom and finding out

Hi Everyone.

A lot has happened recently.

I sit here and reflect on all that has occurred recently as Amelia and Tom wind down from busy days.

Tom and I had "the talk" recently.
It was not the one about "where babies come from" because that is still pending.
It was the one about the lifespan of children with Ataxia Telangiectasia.

The lifespan of his 11 year old sister.

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.
To let Tom and Amelia hold onto as much of their "innocence" and "love of life" until was necessary.

When Amelia was first diagnosed and we found out her probable lifespan, I watched all of the adults around me fall apart.
I watched them crumble under the pressure of looking at her, talking to her and just KNOWING.

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.

The ""innocent" life.

Recently Amelia asked questions (read previous blog) and discovered the truth.

Tom in his own naïve way, has gone about his days and participated in conversations like any 8 year old would.
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.

BUT in our family, Amelia's face now turns white.
Scott and I asked him to stop saying things like that.
"But why? She is going to die" he almost always yells.

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".
He spoke of the "rate these people die per day".
Tom was shocked.
"Can I ask to do a fundraising day for A-T?" he asked enthusiastically.

I saw my opportunity to talk to him about A-T.

"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".

"Ok" he said, leading me into our loungeroom.
"Tell me".

I explained the basics of A-T again......what he already knew.
Then I explained that "A-T children tend to not live as long as other people".
"How long?" he asked.
"It is different for each child. It depends on how sick they get with things like colds.
It depends on many things.
Amelia is considered on of the healthier ones, so it is all different ages".

"So I am going to lose my sister? I will be all by myself?" he said.
Then he turned angry (I believe this is a natural reaction).
Tom began hitting me and saying "You have to have another child".
I explained that dad and I thought about that but decided we couldn''t.
The doctors said I can't too.

He went outside to play (he has told me before that he goes outside to kick a footy when he is stressed).

Tom kept coming back in and asking questions about our conversation.
The one that has stuck with me is when he came in and leant on the bench while I was preparing dinner....

"What is the average age that they die?''.
I answered "It is all different. All different ages".
"But what is the AVERAGE?" he said louder and firmly.
"In their 20''s" I said looking him straight in the eyes.

As he went back outside, I moved to a window so I could observe him.

He just stood there and cried.

Innocence gone.

xxx

How did you know?

Hmmmmmmm.
Sitting here not knowing where to begin.

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.
I always check the mailbox and it is always bills!

Today there was a letter with a sticker on the back naming a photography company.
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.
I also know that we could never afford to get one of their amazing photography packages.

Inside was a card and a voucher.
The card explained that I had been "gifted" a photography session.
It was from girls in my High School year level
(I finished 23 years ago!).
It then listed 40 or so names of girls I used to attend school with.

Gobsmacked.

"Are you ok mummy?" Amelia asked.
I only then realised she was off the bus.
"I don't know" I answered. "I don't know what to say".

I looked at the names.

Some I had not seen since school.
Some I had never had the chance to even speak to at school.

It said they had all contributed.

Why?
Why now?
How did they know?

I ask the final question because life has been a bit of on eternal battle in the last 12 months.
After finishing work, I became very depressed at how I had failed.
With the help of "time", letting it run it's course, friends and family....
I was able to beat it.
That depression is constantly sitting in the wings, waiting for a flat point, waiting to pounce.

Stress levels are always rising and can sometimes get out of control.

Why?

Because I saw our life differently when I was working.
I saw an outside view by spending time away.
I broke the mould of routine that I had created by developing the mindset of giving Amelia an "Amazing Life".

I returned a different person.

It is a person I do not like because she does not handle "life" like she used to.
She crumbles easily and battles with the life that she has been handed.

Most importantly..... Because she no longer gets a break.

My dad used to always have the kids on a regular basis, but he has now injured his back, hip and knee.
He can no longer "walk" Amelia to the toilet or to bed.

It was something I obviously took for granted because I am really feeling it now.

Scott and I give each other a break but it is hard when he works full time now.

I am tired.

I have been fortunate that a beautiful person from Amelia's school likes to have Amelia sometimes, but she has 4 kids.
She keeps asking to have her and I just find it hard to relax knowing that her life is already "full on".

I have been able to find an organisation that will "pay" her when she has Amelia.
This makes me feel MUCH better.

Amelia is only comfortable going to their house now.
Due to the brain changes, the anxiety has increased.

We cannot send her to "fun" disability camps or respite houses anymore.
We always end up having to go and get her.
And that is FINE.
I NEVER want her to feel sad, scared or lonely in these places.
Her life IS to be filled with happiness.
That is my mission.

But it is hard.

I am calling Amelia the CAN child lately....
Can I
Can WE
Can YOU

If I do not do it immediately, she asks every 30 minutes!!!!!

Can we have meatballs for tea?
Can you buy me chocolate milk?
Can I have a camera?

NOW !!!!!!!

I am tired.
I am stressed.
I am keeping depression locked in a cupboard in a far distant room.

This voucher and this card today has really rocked me.
It is not the monetary value so much.

It is the reminder to create another long lasting, visual memory.
It is a reminder of what I will have to look at in the future.
It is a reminder of my original motto.......
"No regrets at the end".

It is the people that thought of me and my family.

One girl messaged everyone to contribute to US.

Thank you to each and every one of you.

Thank you Nicole, you must be one of our Guardian Angels.

xxx

Hello !!!

Good evening everyone.

Hard to believe that we are already so far into 2015.
Time is passing by way too quickly.
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.
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.
It NEVER crossed my mind that it was fast approaching !!!
I probably would have sent him off to work and wished him a nice day !!

We have a new addition to our family.
He is very naughty, active, boisterous and incredibly happy.
His name is Buddy.

 8 weeks old in December.

In February.

 

Tom named him.

It was his turn to name a pet.

He wanted Gregory (from Minecraft), but I had eliminate it from the list.

I could not see myself standing at the back door calling out to "Greg".

Scott did not support me on this and only agreed with Tom it was a great name, because he thought it was "hilarious".

 

Amelia was given the honour recently of being a bridesmaid for my cousin.

I had to drop her off to make up, hair etc at 10am and not see her again till the ceremony at 4:30pm.

She had the most magical day and we were all honoured to be part of such a beautiful ceremony.

 Amelia looked stunning.

Our whole family.

 

Tom recently attended his first Diabetes Camp, organised through Diabetes Australia, on his own.

He knew no one.

We were all incredibly nervous taking him and it was obvious he had concerns when we said goodbye.

BUT it is probably the best thing he has ever participated in.

He came home covered in mud, mobile phone numbers written up his arm and had the biggest smile.

As I was getting Amelia's wheelchair out of the back of the car he yelled "MUM" and jumped into my arms!

After a while I explained that we were getting McDonalds on the way home for lunch.

"Oh great" he said. "After all my excellent eating, you are going to buy me something bad".

Oops.

 

Tom has returned from camp giving himself all of his own needles!

You have no idea how much this helps me.

All the arguing, anxiety and reminding has gone.

He just does his needle!

 

Amelia is full of pre-teen hormones.

Sometimes we all duck for cover and sometimes we are laughing hysterically at her sense of humour!

She has definitely become more confident this year and is much happier overall (even when we all need to duck for cover!).

 

I have been sharing this gorgeous girl's blog on my page a lot.

We met in 2009 when both of our daughters started their first year of Primary School.

There was actually a small group of us that gravitated towards each other that year.

Julia was the only one in the group who knew other mum's but she still chose to hang around with the cool "misfits".

You could not possibly find another group of people that were all so totally different from each other.

But we all fitted nicely together.

 

When we were in Disneyland, one of the "group" lost her life suddenly.

Kel went from having a cough to all of her organs shutting down.

It was and still is beyond devastating.

 

Julia is into her second year of stage 4 cancer.

Many of you, like me, are living through her battles and realisation of her future through reading what she writes online.

 

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.

 

Recently she wrote a blog that many feel guilty about....

It was about how individuals focus on the need to be "busy".

 

Please have a read of it......

 

https://fivefairiesandafella.wordpress.com/2015/04/15/the-glorification-of-busy/

 

If you get a chance, if you are not too busy (pun intended!), then please read her other entries too.

 

Something that I feel strongly about is the pressure on individuals to be a certain way.

I am talking about personalities and everyday life.

 

Most of it is contradictory and only lowers peoples self esteem.

It does not allow people to just be themselves and follow what is their journey in life.

 

Let me give you an example......

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.

THEN

You have a memo circulated that says "Shut the fuck up. I don't want to hear your whinging".

 

There are mothers constantly attacking other mothers and everyone knows the argument of bottle or breast.

 

I am not talking about just online.

I am talking general media and even face to face interactions.

 

People criticise and talk about the "ideal" scenario for everything and everyone.

 

Why can't we all just BE?

 

Judgement from others is a big negative in our society.

 

It is also a big negative for the guilt we put on ourselves.

 

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.

I SO believed that the routines listed in this book would be what I needed.

That they would work.

I spent hours typing up the routines, laminating them and sticking them to the wall in the baby nursery.

 

They didn't work.

They made me stressed out and feel like a total failure.

 

Then I read a letter to a children's magazine from a mum.

She spoke of just "going with the flow".

 

Such a simple statement, but one that taught me to relax and enjoy being a mum.

 

I think we all need to "go with the flow" and stop the personal attacks and guilt on ourselves and others.

 

Just BE.

 

xxx

 

Months of Catch Up.

Hello.

It has been a long time between posts, so let me introduce myself again!
My name is Amanda. I am slightly nutty, very emotional and have recently been taught to live life differently.
In the last 4 years, I have been on a roller coaster of feelings and emotions that I never knew about.
You see, our beautiful daughter, Amelia, was diagnosed with Ataxia Telangiectasia in 2010, and our whole world crumbled.
I have been living a life I never even considered in my future aspirations in my early 20's.

I find that by writing my feelings and thoughts down HELPS.
I have also found other caring people in my own personal journey.

I have lost friends, gained friends, experienced haters and changed as a person.

Our son was diagnosed with Type 1 Diabetes 14 months ago.

I know need to start back a few months........

We had an OK Christmas.
A "Minecraft" Christmas, as Amelia and Tom called it.

The kids loved their gifts from Santa and those around us.

They were presents and we were happy to see smiles and eagerness to download and play with special app games and merchandise.

Our Six week Summer Holiday was busy.
I was determined to "make up" for the time I had lost through working last year and my subsequent depression.

I reconnected with the kids.
Emotionally, physically ........ psychologically.
It was awesome, amazing and beautiful.

Now, I need to tell stories through photograghs.

 Amelia insisted on buying a Christmas tree for her room.
She MADE me go to K-Mart so that she could choose her tree and decorations.

 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.
I chose to take Tom only due to the noise of an arcade game venue. Amelia can no longer handle loud noises.
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.

 Tom's school Christmas Concert.
Something was wrong with his tongue.

 This is going to be a long story.......

The man in the photo recently left Tom's school.
Everyone was heartbroken, but we had a very special reason.

This man was a teacher that all teachers should aspire to be.

His primary focus is not on academics.
It is on the social, emotional and wellbeing side of each individual child's life.

If children are not feeling safe, happy and having fun, then how can they learn?

That was the difference with this man.

When Amelia began there in Grade 1 as a child with "mild cerebral palsy" he was like a magnet to our family straight away.
When a child thought it was funny to repeatedly push Amelia over in the sandpit, he addressed the issue immediately.

When Amelia spent the week in hospital and emerged with the label of Ataxia Telangiectasia, he did what no one else did.
He focused on Tom.

He recognised that Tom was the forgotten child in all of the grief and move to acceptance.
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.

That continued right up until last year.
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.

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.
We decided that she would come back the following week for one last day.

That last day will be with me forever.
During the usual morning assembly, he addressed the school to announce Amelia's final day.
It will always brings tears to my eyes the poem he read.

While most would have just " brushed off " that this was her final day, he recognised what it meant.

On his own final day, he stood up in front of the school with a Dr Suess hat on.
He told a story of the author of these famous books.
A story before he published any books. Before he became famous.
He spoke of how this man was repeatedly turned away from publishing houses because his idea was "rubbish".

He told the children that this man never gave up and was eventually published.

The author has now published over 70 books and is famous worldwide.
It would be hard to comprehend his wealth.

This man told over 500 children in this assembly
"Never give up. Keep aspiring to be and do what your dream is".

I will NEVER forget that speech.

When he arrived at our house, just before Christmas, he gave his Dr Suess hat to Amelia.

What could be more poignant?
A child that has so many limitations and yet this hat says.....
"Never give up. Keep aspiring to be and do what your dream is".

Everytime I look at that hat, I am reminded of the man who believed in my children.
REALLY believed in their future.
REALLY believed they could be something and someone.

It was the same to all children at the school.
You only needed to look at the amount of parents in attendance in his final assembly.
People who took the morning off work, children that took the morning off school.

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.

You will be in our hearts and memories forever.

I had so much more to write and speak about......
BUT I will leave that for another day now.

xxx

All Innocence Gone

Hello.

It has been a long time between posts and I am quietly succumbing to the defeat that is computers.

You see, I have had a blog accumulating for quite some time now.
A blog of our Christmas, Summer holidays, special visitors and information about a new family member.
It was a long one that would have required the audience to pre-plan a cuppa and food.

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.
I will try again.
I promise.

I also have two heartfelt movies, that have been made, to share.
Due to my disastrous computer ability, I am unable to upload to You Tube to share with you.
One Christmas present to Scott.
One to myself.

I whole heartedly feel I need to skip that blog anyway.
Something so much more important has happened......

Amelia called me into her bedroom the other night.
I was not in a good mood.
My frame of mind was ready for children to go to bed so that I could stare blankly at a wall.

"Are you in a bad mood?" she asked carefully.
"No sweety. I am fine. What's up?" I answered.

"Am I going to die from my A-T?".

I stopped all movement and thoughts.
My heartbeat quickened.

I realised that the next words I spoke were going to be some of the most important ones of her entire life.
My words were going to either make or break her whole being.

In seconds I visualised everyone that loved this beautiful child and how they had coped with the medical description of Ataxia Telangiectasia.

This child was 11 years old.
How would she cope with the honesty of her own mortality?

I knelt down next to her in the darkness and looked at her face.

"A-T does take a lot of children away before they should go". I began.
"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".

Amelia began crying.
I climbed into bed with her and just held her.

"I do not want to die" she said with great fear.

"Get out" she said suddenly.
"Get out and leave me alone".

I was not comfortable leaving her like this, so I turned to the monitor next to her bed.
I knew Scott had the responding receiver.
He always has it.

"SCOTT. Get in here NOW" I said firmly.

For the first time ever, I did not know how to explain something to a child.
My child.
A child who is slowly dying.

I ALWAYS knew how to explain something to a child.
It was my degree at University.
I was blank.

Scott came in.

"Hello. What's going on?" he asked casually.
Obviously he had not heard the previous discussion through the monitor.

"Amelia wants to know if she will die from her A-T".

"Oh" he said kneeling down.

He looked at her tears and my plea for help.

All of a sudden, I saw a man with amazing capability and confidence.

"Amelia" he said firmly.
"We do not know what the future holds for you, but I really need you to look at the...NOW.
You are the most amazing, beautiful child, who is happy and enjoying life.
You are surrounded by so many people that love and support you.
You have 2 parents that love you.
You have a happy home, full of animals.
Have you ever noticed that you ask for ice cream.... I give you ice cream?!
So many children have no home or parents that argue all the time.
Your life is wonderful.
Look at the NOW and not what MAY happen in the future.
No one knows what is going to happen in the future.
Please just love and live for NOW".

I lay silent staring at the ceiling.

Amelia and Scott began laughing and talking of many things.

Hours later, as my body felt light and my mind felt numb, I lay in bed to go to sleep.

I turned my head to the amazing man that I had just fallen in love with again.....

"Thank you" I said.

xxx

2015

Hello everyone.

I hope everyone had a wonderful Christmas and said goodbye to 2014 as excitedly as I did.
For me, it was the end of a horrible chapter in my book.

I lost myself.

The beginning of 2015 has already felt euphoric.
I feel like my whole body and mind is cleansing.
The events, difficulties and negativity of 2014 has been washed down the sink.
Scott, my beautiful gentleman, has made that so much more possible.
He is flourishing at work and is so much happier.

During the past fortnight, I have sat back and reassessed my life......our life.
I can feel my patience for each child returning.
I can feel the cleansing of bad experiences, situations, friendships and thoughts.

I feel in control of 2015.

This is a blank chapter.
One that I can dictate and choose.

I am the narrator of my own happiness.

I will choose who and what will be a part of my life.
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.

In 2015, I am going to.......
become fitter,
beautify our home,
spend more time with both children at school,
have fun cooking yummy meals and snacks,
have fun and spend quality time with both kids
AND
enjoy, love and train the new family member....
Buddy.

Buddy was a long time coming.
After having a Labrador, I have always longed for another.
Poor Scott saw the photo's of this gorgeous little man and could only say "Get Him!".
We went and visited him last week.
Out of 9 pups, he is the fattest.
I could not stop laughing and calling him "fatty boombah".
Buddy is ADORABLE !!!

Tom is maturing.
His difficult and argumentative ways are quickly making way to acknowledging those around him.
He has grown even taller (if that is possible for someone his age) and grown his hair to "Bieber" level !!!

"I am going to grow a mullet" he says.
"No you are not" I say firmly.
"But lots of people do it" he says (naming famous people).
"Not in this house, we don't" I answered.

I love to watch him playing with other children at home and when we are out.
I love watching his interactions with Amelia.

I am really happy that we have connected again after my "work life".

Amelia is approaching teenage-hood and is scary.
She can go from happy to "sobbing" sad in 0.1 seconds.
It is scary stuff.
She screams, yells and laughs till she cannot breath so quickly......
we all look at her in disbelief.

Tom : How can she be so happy and then so sad so quickly?
Scott : Welcome to women mate.

I need to be in a good place to deal with these hormones!

And finally,
I leave you with SEX.
That conversation you need to have with your children as they get older....

Both kids were laughing over the word "sex".
Me: What do you think that word means?
Amelia: Having a baby.
Tom: Hugging in bed with your undies on.
Me: Ok. Daddy and I will need to have a talk to you both sometime about what it really means.
Tom starts bouncing with excitement in his seat, desperate to talk.
Me: Yes Tom ?
Tom: Ohhhhhhh. I know what it means. HUMPING.
That is what it means. HUMPING.
Ummmm mum, what does that mean ???

Discussion still to be had....

xxx

Reflecting

Hello.

I am feeling rather reflective today and am processing many things.
It seems understandable with Christmas Day and the end of another year approaching.
Today is the first day in a long time that has allowed us to sit and do whatever our hearts desire.

The knowledge we have of 2015 is allowing us to look forward to what will hopefully be a wonderful year.
2014 has been very difficult and one we will be glad to say goodbye to.

Tom came home with another amazing school report.
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.
(I had sent all supplies but Tom accidently left it at school).
He will be in a composite grade with children a year higher and his teacher sounds like she will be good for him.

Amelia is happy that she has most of the same staff and students that she had this year.
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.

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.

I am looking forward to a new family member coming to join us in late January.
A Labrador puppy from a reputable breeder.
He is a golden colour and will be a wonderful companion for all of us.
I am also grateful that Tom will have a playmate in the backyard.
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.

This past week my father in law replaced our revolting, stained carpets with a stunning vinyl floorboard.
It is amazing how it has not only changed the look of the house, but also our mood within.
It is calming to look at and does not make you feel like the house is constantly "dirty".
I am looking forward to open fires in Winter!

My dad also installed pay TV for us.
I am loving flicking through all the channels and watching movies.

Next year I am going to focus on returning to the book I began writing.
I have so much that I have already written and yet so much more to do.
That as well as keeping the house a bit tidier than this year !!

My dad is still not better and I hope with the surgeons he will be seeing in the future, he will be healed.

Next week will be full of excitement as Amelia and Tom open their presents.
I have been able to order many items online that none of us knew were available.
I just hope they arrive before Christmas!

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.

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.

2015 is going to be a good year.

Merry Christmas everyone.
Enjoy the excitement on children's faces and cherish family times together.

xxx