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

Death

Hello.

Today we had to have a conversation about death.

As you all know, we have chosen to protect the kids about the full knowledge of Ataxia Telangiectasia at this stage.
You never realise the importance of "saving the innocence of children" until you are in a situation like ours.

This is how it came about.....

Amelia returned from an amazing evening with a staff member from her school.
She has become close to the family and friends of this staff member and sees it as her special place.
But she was tired.
Exceptionally tired.
I lay down with her to cuddle and help her go to sleep.

She started panicking...
"Mum am I going to die?".
"Mum, please make sure I wake up in the morning".
I asked her why she was feeling this way and she could not explain why.
Had she heard something?
Did she feel something?

Amelia has shown on many occasions her ability to teach adults lessons about life.
She has been incredibly intuitive on many occasions to know things that we do not.
Was this one of those times?

"I feel like I am going to die".
"Am I going to die from my A-T?".
"I think about it all the time".
"I think I am going to die tonight".

I began feeling petrified and heartbroken all mixed together.

I told her that I will ensure she wakes up in the morning and we will talk about this more then.
She needed to sleep.

As I left her room, I began to panic myself.
What if it was going to happen tonight?

Scott and I stayed up for a long time.
We talked about how we were going to approach this.
We put her monitor on as loud as it would go.
We listened to her breathing as she slept.

The next day she woke up and said "I do not want to talk about it today".
I said she had no choice and we would be.

I asked her "Do you think you may die soon because of your A-T?".
She quietly nodded her head with tears in her eyes.
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.
Lots of children and adults die too early for lots of different reasons.
We all die at some stage.
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.

I then moved the conversation on to where we may go when we die.
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.
I explained that if she were to die, Nana Val (Scott's mum) and Barney (our very loved labrador) are already there waiting.
She will be able to run, play, dance and sing.
Her A-T would be gone.
The place will have beautiful green grass, fairies and butterflies flying around and a gorgeous sunshine.
It will be magical and you will feel free.

The conversation approached missing those "left behind" ......................  us.
I explained that this magical place does not let you feel sadness.
You only feel happiness.
You will be there waiting for us.
We will be so happy to have YOU show us around when we die.

Dying is not a bad thing.

Scott said I did good.

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.
Too sad that you have to have this conversation with an 11 year old.

xxx

4 Years since Amelia was Rediagnosed

Hello.

This week marks 4 years since Amelia was rediagnosed.

Below are my status updates on Facebook during that week.
They are short and sweet... (well not totally).
It does not include the pages and pages of comments.......

Very hard to read but grateful that I was not alone.
As well as Scott, family and friends, my Facebook friends got me through.


November 25th 2010

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.....

November 28th 2010

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.

November 29th 2010

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......

December 1st 2010

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....)

December 2nd 2010

What a beautiful send off the school gave Amelia..... Both of us crying.

December 4th 2010

 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 !!

December 5th 2010

1. Sooo very proud of Amelia. No fighting the anesthetic.... Just co-operated. Now we wait for her to come out.

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.....

3.She must be feeling a bit better..... She wants macca's !!!!!!! Lucky it is just downstairs !! 

4.  BUGGAR..... Just got told we will not get any test results for WEEKS.....

December 6th 2010

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......

2.  And Scott wasn't here when they said !!! Damn!!

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.

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

5. MRI result back. Not good. Talk later when we know more........

6. I just cannot stop crying now.......It is not good at all. 7. Everything I had hoped for is not happening.... Just the opposite 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....... 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. December 7th 2010 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.  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". 3. Staying tonight again.... 4. Fuck the diet........ December 8th 2010 1.Scott asked tonight "are any of the things you are looking for life threatening?". She said "yes". 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. 3.Please know that I am reading everyones messages even if I do not have time to reply.... Love to all..... 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 !!!!!      5. Amelia's slowly woke up out of sedation to the clown doctors performing in her room.... December 9th 2010 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.......... 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...... 3.  Thanks guys. Meeting at 3. Have a bad feeling......... 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.......  xxx

Climbing the Ladder

Hello.

I do not know if people realise, but writing on here is a very intense process.

Sometimes it is "oh shit. I have not told them about Amelia lately".

But sometimes it is an emotional cleansing from my own brain.
It is revealing thoughts that people do not normally tell anyone.
It is maybe only me that ever thinks AND feels such intense emotions.

These ones can be very draining.
I quite often need to be alone or go to sleep afterwards.

Explaining it makes me feel like a character out of The Twilight Saga almost !!!!

Today I wrote the following post, in response to someone, on Amelia's Project page on Facebook......

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

Whether it is depression, bipolar or just our circumstances.....I have moments.
I have times where I am high and times where I am low.
Times that are very apparent since Amelia's diagnosis, which makes me think a combination of all three.

This low has been the lowest I have ever been.
I really struggled with this one.

This time the self loathing, non-deserving and regrets of friendships lost, took over.
This time I struggled to function.
This time I thought I was at a point of no return. 

But writing the blog on Saturday night, reading all of the messages, texts and listening to my voicemail helped.

But looking at Scott's face on Saturday night.

I cannot describe it.
The look of despair.

I do not want to be "that person".
I do not want to be the person who gets that kind of look.

I made the roster and followed it today.
I put music on and looked around to write down positives.

But you know what?

Those things would not have helped last week.

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.

Hit the darkest, loneliest place in all of humanity and realise there is nowhere to go but up.
It may take days, it may take months.

Many people struggle with it.

Thank you to those that told me I am not alone.
Your secret is safe with me.

I am starting to climb up that ladder now.  

xxx

Thank you

Hello.

Thank you for reading and commenting on last night's entry.
It is something that has been building and I have been unable to articulate it until now.

Thank you for your calls, messages and contact directly with Scott (he will not leave my side!).

Thank you for being non judgemental and accepting my current thoughts in this difficult life we lead.

I am going to now attempt moving forward by addressing the bulk of the issues.

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.
I am going to finish arranging this house to the way I know makes me relax.
I am going to begin spoiling myself again with books, movies and favorite TV shows.
I am going to plan meals and snacks that puts a smile on everyone's faces.

I am going to make a chart for Tom that may minimise arguments over insulin needles.

I am going to spend more quality time with Amelia.

Finally I am going to address the way I feel about myself.
My self esteem needs improvement (or I actually just need some!).
Try to stop the self loathing that appears every time a friend disappears or a disagreement occurs.
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.

I am going to begin making a list of positives daily.
I am going to "stop and smell the roses".

Thank you for being there.

xxx