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.

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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.


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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 !

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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

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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

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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!

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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