Dear Amelia and Tom

Dear Amelia and Tom,

I am sorry.

I am so incredibly sorry.

Amelia you are 14 and Tom you are 11.

Both of you are dealing with conditions that are genetic and created by your daddy and I.

You are dealing with everything different in your lives because of your daddy and I.

Our genes created both of you and all of your differences and difficulties.

We did not know though.

I so, so promise, with all my heart we did not know.

Tom, you have to deal with such limited sugar and carbohydrate intake.
Measured food and limited choices for you, my amazing boy.

You are woken up at all hours of the night and are forced to eat and drink while half asleep to get your BSL to a safe level.

Discussions 4 times a day (including daily calls from school) about insulin doses based on exercise etc.


Amelia's A-T gene disposition could have been compared to a whole MCG full of people..... and just your daddy and I had the A-T gene.
We were soul mates when we met and made you.

A beautiful, teenage loved up couple.

One in 4 chance of creating an A-T child.......
and we did it.

YAY!  us.......

NOT.

We lost your mobility slowly, after creating it.

We are losing your speech, after creating it.

We are losing your brain after creating it.

Now Amelia's lungs are failing her slowly.....thanks to our genes.

We always new it was terminal, BUT this is scary.

Lungs = breathing = staying alive.

I do not know what happens next.

I am so, so, so sorry.

We just did not know.

Creating people so inspiring and amazing and yet making them suffer everyday due to genetic disposition.....

We are just so sorry.

We just did not know.

But...................................

IF we did know and IF we did know the typed facts........

We would have possibly stopped the birth.
You would never have been here.

I would have looked at me personally and thought that I was not the type of person to mother such children.

(I honestly say this sobbing while trying to find the keys on the keyboard)

BUT then I would never have been introduced to this kind of life.

A life of finding positives and happiness around every corner.

Thank you Amelia and Tom for showing us where to look for inspiration.

We know now to just look at both of you for courage in moving forward.

Our future may be scary, but you both seem to be leading the way.......

While daddy and I follow the path.

xxx

February 23/2/18

Hello!

Lots of changes here!

We have carers regularly arriving, for Amelia, and no one knowing in the family what to do while they are here!
It is REALLY weird.

People come into your house and try to do the job that you have always done.... BUT first they need to learn it!

They AND you are nervous!

It will take a loooooooong  time to adjust!

While the new carers are here, family members disappear to read, watch you tube or hide in a corner sleeping.....or hide.
I cannot find them, so I do not know!

I have to stay nearby and regulate myself on interrupting and helping Amelia explain things.

But after almost 2 weeks, it is slowly becoming a good decision.
(A decision forced upon me by therapists).

Amelia adores them and enjoys new ones arriving.

We will have 4/5 carers allocated to Amelia (for continuity and bonding) allowing for sick days and holidays.

I understand we need extra help with the 24/7 and Amelia needs the extra companionship and friendship.
She is seriously loving the extra attention.

I also need the help with Tom in school pick up and drop off as Amelia's school bus occurs at exactly the same time every day.
I cannot do both at once.

As we all struggle with the almost daily carer visits, Amelia loves it.....

At one stage I came in to her feet on our coffee table being painted with nail polish!

Amelia has become even more outspoken recently and is displaying even more "quick wit".

As always, introducing "new" people to her is a laugh.

"Did she just say that?" they say.

YES! we answer.

Yes she did.
Get used to it.

She is clever, witty and hilarious.
She is also very immature, squeals inappropriately and thinks penis's are hilarious.

God Help Me (on the last one!)

We have worked with her over the last 12 months to accept carers (strangers) coming to shower her.
For a 14 year old girl that is HUGE.
Naked, scars ..........and so incredibly self conscious.

We are so incredibly proud of her smiling, talking and laughing throughout the whole process.

Personally, I would have struggled......

We are currently working through a major hurdle in disability in our family.....
But the main person in the battle of acceptance, Amelia, has been amazing.

Amelia is our leader on this.

We can walk away, leave the house or choose not to speak.

Amelia does not have that option.

Carers need to work directly with her.

Amelia is showing AMAZING resilience talking and accepting others, while we try to work out hours and days for assistance.

I need to see 190% knowledge, understanding, acceptance and proof that you can care for my child safely.
One mistake and we may be in "danger zone".

A massive leaning curve for all of us.

xxx

New Lifestyle

Hello Friends,

(Please read the 2 blogs below before this one!)

This week our very first carers arrived!

We were all excited, petrified and realised it will take time to get used to.
Tom said "I probably shouldn't do play station while they are here".

"Nooooooo" I said.
"We all need to act and live normal!".

We have all discussed the new energy and ideas that will start coming regularly
(in the form of people!).

BUT how we are also all ingrained in routine and quiet time.
We have become such hermits and it is strange to have people coming and going regularly.

Hopefully they will inject another element of "fun" into Amelia's life.
She is truly ready for it and has already embraced it readily.

The rest of us need to just get used to it.

_____________________________________

In this whole process of understanding and accepting help from the outside, I have personally struggled , sometimes despite my online positive comments!

For 6 months, I have been preparing Amelia, while probably preparing myself more.

I know it is not admitting defeat, but that is how I have been honestly feeling.

Admitting that, even though I am a full time carer........... "I need help",
Even though "I am her mother and she is my responsibility".............. I need help.

Letting someone else have experiences with Amelia, regularly, that I should be having with her....

But this is part of the possibly "unhealthy" closeness Amelia and I have now.
We need time with others and apart now.

My body, my mind, Tom and Scott, need me to dedicate time to them too now.

In my process to find people to help us, I hurt someone special, dearly.....and her family.

I had a meltdown and struggled with it all recently.
I was cruel and unkind to someone.
I will be forever upset with myself for losing this person as a carer (and Scott and Amelia will never let me forget, because they thought she was awesome).

Another strike, cross and mark against my name.

Special needs and fear has changed me forever.

Sometimes I truly despise the person I have become.

Sorry.
That is very blunt........
BUT when you are handed a life of confusion, it is very difficult to know how to handle, confront and solve it....and situations that arise.
Especially in a situation like ours.

I will forever sincerely apologise to this family for my wrong choice of comment and behaviour.


______________________________________


Tom has decided to sign up for the ican challenge at his school.

When you learn about what that is, you will understand about why I may have hyperventilated momentarily.

In 7 weeks time, Tom (or Tommy for anyone around him)
will partake in a Royal Children's Hospital fundraising walk FROM Frankston Pier TO St Kilda.

50 kms.

50 F'N Kms !!!!!

BREATHE. BREATHE.

Type 1 Diabetics will understand my heart attack, fainting spell and loss of breath.

Serious Hypo Situation.
(Dropping too low into an unconscious state after the event).

BUT, BUT, BUT,
If anyone is going to look after himself and follow the rules.........

Actually NO!
Type 1 Diabetes is soooooo unpredictable, it is going to be a rollercoaster!!!!

If anyone is going to prove that diabetes cannot stop him though,

it will definitely be Tom ......
sorry Tommy.

TOM FOR GOLD!!!!!!

Or just completing the 50 km's and not ending up in hospital, would be good!

(disclosure - mum- Amanda will spend the next few weeks in contact with RCH to ensure diabetic child has a reasonable plan in place!)

(that will not work of course- type 1 does what it wants!)

(A plan that has insulin, sugar and carbs ready for a 50km walk - it will be totally inaccurate and mum will administer appropriate crap).

Tommy's mum will have anything and everything possibly needed.

Because she will drive the whole f'n thing !

_________________________________________________


Rewinding back to my early years, when I met Scott (1990 - 15 years old), I also met his 2 best friends.

Both friends had the most amazing mum's ever.
One mum of one of the boys had the most laid back golden retriever you have ever met.

This guy was one of the people that let me intrude the small "best friend" group they had created.

Actually, I think he hated me for a long time (but don't tell him I said that!).
We were only 15 years old!

He slowly let me get to know him while I got to know "his life".

For all the single mums out there, this guys mum was amazing.
She struggled and fed and clothed him on her own.
She housed him, while trying to live a life of her own also.
She was welcoming and amazing.

In the last 2 decades we all grew apart sadly.

Last week the stars aligned to remind him that "this group of friends" would always be there for each other.

The messages started last week about this amazing mothers ill health.

Last weekend she passed away.

I feel like this extraordinary strength of my youth and a role model to women in general has passed.

I feel this extraordinary man, that has followed and private messaged us on numerous Amelia's project blogs, has developed perfectly by the love of his mother.

Sometimes there are friends that will be friends forever, no matter the past.

Continue being the amazing person you have become.
See you at the funeral xxx

________________________________________


My Kitchen table is currently covered in a massive amount of paperwork and has a laptop in the middle of it all.
This NDIS plan is going to be very thorough and detailed!!!!

They want independence and quality of life for Amelia?
I am offering loads of opportunities for her to have it.

She has gone without equipment etc because of cost and timespan  to receive and all of that is about to change. I am determined to research, learn and apply for everything she honestly deserves in the next few weeks under the new NDIS plan

________________________________________

Finally.....
Last night Amelia had her nails done by the carers that came.
They started the process of a Communication Wall that I had prepared that shows Amelia what is happening and when. It includes a section for her to write what she would like to do and try in the future with these people.
I was able to cook tea and spend time with Tom.

Tonight I was able to watch Tom's footy training on the beach and socialise with parents (I am always isolated with Amelia because we can't get her on the sand).
I cant leave him and take her for a walk in situations like beach footy, because of his Type 1, and the exercise could cause him to hypo.
But tonight a carer took her for a nature walk around the area and bought her an ice-cream. She had an AMAZING time. They apparently laughed, giggled and accidently got themselves soaked by a faulty drink tap!

I was given the chance to talk to adults.
Many that have been around Tom's footy team for 3+ years.
I have never been able to just talk to them.

I will have to watch the amount of extra stimulation outside of school time though. Amelia was sooooooo overly tired tonight!

____________________________________________

Things are going extremely well and I am excited about personal growth in the future.
(I just need to work through issues on what has always been my "mantra" on Amelia's life and my constant part in it. Time to let others help).

I don't know how much more I will be able to blog for though.

Family pressure to stop talking about issues within and immediately outside the home have become quite intense.

The kids are growing up and sick of people saying "I read online" and "I read what your mum wrote".

Scott says "I love reading what you write, but no one else reveals stuff like you do. Maybe we should start keep stuff to ourselves".

My parents are questioning the information I reveal.

I have always been extremely open, but I have also been the one to receive the negativity and nasty comments.

Maybe it is time for private blogs.

Things are going well for now.
Maybe I have written enough in the past 8 years to show the disability pathway and heartbreak of a parent.

As Amelia says "YOLO".
You Only Live Once.
From someone that honestly knows there is no timeline on "that once", maybe I should sign off on that motto.....

Or the one I will always live by for Amelia......

No Regrets At The End.

Cant get better than that!

Many 80 year olds would love the life she has lived so far.

The love surrounding Amelia would be the number 1 request on anyone's list.

Love to you all.

xxx


xxx

2018

Hey Guys,

Almost Midnight here, so just a quick post!

We are so busy with a million things happening or about to happen.

Everyone here is the best they have been in a very long time.

Our baby, Tom, entered Grade 6 this week.
I was almost as emotional as Prep!
He has an amazing group of kids around him (and parents!).

Amelia has entered a new grade.
Year 9.
New teacher and different friends.
The first new teacher in 4 years!

I am so incredibly proud to say, after all the anxiety over the holidays, that she has totally smashed it!
She is coming home happy and excited and full of stories.

Amelia is honestly taking life by the horns lately (please tell me that is a saying, because Scott tells me that I get them all wrong!- I am the person to unknowingly make up words to songs and common sayings!).

Amelia is really trying her best and using humour and sarcasm to get her through many situations lately. Thankfully school is genuine!
(I wonder who taught her that!).

One massive thing is that we are about to have "paid carers" enter our home.

"Well the government has saved lots of money on your family" one person at Amelia's school said.

Call me stupid (just looked up the meaning of Martyr and did not like it!) but I have always held the belief  "I am her mother and I will look after her".
I realise now that she should have been introduced to people helping us earlier.

BUT I am not upset at myself for believing she was my responsibility only.
Maybe that has helped the close connection amongst all of us in the family.
All of us helping and learning compassion by helping one another.

My back and hip no longer want to be alone in this battle.
They have turned against me and gone to an agency.

I have spent the past 6 months preparing Amelia for this change and she is now saying "I AM SICK OF YOU ALL AND NEED NEW PEOPLE SPENDING TIME WITH ME".

Or yelling it.
I think I (or my hips and back) have prepared her well.

The Government have given me a small amount of money to pay someone for now.

MASSIVE.

A massive move for our family.

The hardest part is allowing people to enter our home every 2 days to care for a daughter that is mine.
To observe and judge and think on what is mine.

But I need to get over it.
It is what it is.

Another big thing to happen soon is the NDIS.
It is the new Australian Government disability insurance scheme that Amelia did the very first advertisement for a few years ago.

I cannot possibly describe how HUGE it is.
If I write the plan correctly and connect it to the correct links on their 50 plus pages of links....
I may be able to get her everything we have NEVER been able to afford.

I have done SO much study and need to do 3 times more to get her the best plan possible.

Stuff it up and you will be left with not much.

Have a look at the photo I recently posted on the FB page.
I am aiming for stuff like that.
They want "independence" and " quality of life", I have pages of things she needs.

I have so much that would help Amelia.

I seriously cannot wait.

But we can also only try, because they may say no.........

_______________


But as I said to Tom's new teacher this morning.....
As we finished discussing HIS diabetes....

I have no idea about either of the kids anymore.

I have no idea what may happen with Amelia this year and whether we will end up in hospital or not.
What her diagnosis or prognosis may be, after previous years.

I have no idea whether we will be in a dangerous life situation "health wise" or not.

BUT please rest assure, I have the most amazing village around us to look after Tom outside of school hours.

The most amazing people that adore and love and discipline him as much as we do.

There is also ONE amazing teacher here, that he will always run to, when times are difficult.
One he adores and will just sit and talk to.

She got him through the unexpected cancer battle and has opened her door to help him through anything in the future.

HUGE for a pubescent boy.

But he still talks regularly about and to her, through playtime etc.

You, new teacher,  may need to look after him emotionally during school hours and that may be a task we need you to step up to.

Just warning you, because we all have no f'n idea what is around the corner!

But as always......
we smile
we laugh
we joke
we live with sarcasm
AND most importantly,
WE stick up for each other.

Cheers to 2018 friends xxx