Christmas 2019

To Our Village,


Tonight, as I finally sit at 10:29pm, I want to take the time to reflect, thank and apologise.

I have always said that I was not the right person to give a child like Amelia to.

I WILL ALWAYS feel that way.

I am totally the wrong person.


I am EXTREMELY emotional, think too much, talk WAY too much and am too protective over those that I love..........that I do everything mentioned previously ON REPEAT.


Sometimes I feel like I have won tattslotto with what has happened in the last 9 years.

Mostly I don't.

It has all changed me for the better INTERNALLY...

But changed me for the worst EXTERNALLY.


I have been gifted a tolerant (many will high five that one!), caring, supportive and independent individual in his own right = HUSBAND.

I have been gifted a defiant, sport mad, intelligent, kind, BIG personality, thoughtful and argumentative = SON.


I have also been gifted a  = DAUGHTER  who speaks way beyond her years and expected thinking for someone born in 2003.

She teaches others what can never be taught in schools or books.

She makes others FEEL love that blindsides you.

She teaches you personal growth you never knew possible.



And then they are stuck with ME!

I am not looking for sympathy or positive comments, so don't bother.



I just want to thank OUR VILLAGE tonight.


Whether you dislike one or all of us, you are on this page for a reason.



Maybe it is gossip or curiosity.


Maybe it is genuine admiration and/or love.



(After 9 years since diagnosis, you recognise friendship, gossip-mongers and people offended easily more closely.

It is like a microscope with my emotions and level of thinking!).



As we complete 2019, I thank anyone that made Scott, Tommy or Amelia smile and feel genuine happiness.


Thank you for creating, continuing or trying to establish friendship, support and genuine love with any of them.


As always, we have had our struggles this year.......

BUT so has anyone and everyone.


It is what they call, LIFE.


Scott has a small network around him that he adores.


Tommy has one that is constantly dissolving and growing with his young age.

People that he can turn to at anytime.



Tommy has just returned home from one of his "other families", in another Australian state and the happiness and love is flowing off  him.

I have considered their son one of my own since 2014.
I adore him.

I would not hesitate to have him living with us, I adore him that much!



And Amelia has had her carers, OR best friends as she prefers to call them.

They do their hours.

They spend time with her.

They establish "their connection and time with her".

Then they start to stay longer and then they message her frequently.

Then they have her stay overnight at their place free.........

Then they become family and I grow too close...........

I become protective and learn to love them too.

Professional relationship lost.



Scott has taught Amelia how to message through "voice command".

I have no idea what is going on with her messages anymore!
I do not know what messages she is sending!

Just like Tom!

Welcome to teenage hood.



We have amazing people come 4 times a week, into our home, to spend time with Amelia.

No matter what is occurring here or what mood any of us are in (predominately ME as I am the one here constantly).............

I am the only one that cannot lock myself away in a room away from our beautiful helpers...

I treat them too closely.

I know no other way, when they come into my home and act like they live here regularly.

They are people who genuinely love MY Amelia.

They become family.

THANK YOU to our amazing carers......


BUT now thank you to EVERYONE ON HERE.


Thank you to Amelia's Village.


OUR VILLAGE.


Tommy also has a massive one.


Thank you for your love support and hopefully personal growth through my writing.


Merry Christmas 2019.

xxx

A Perfect Life

Hello Fellow Inmates.


Just a quick post tonight due to the time and the fact I actually get a sleep in tomorrow!



This week, I realised that Amelia has been slowly teaching me the lesson of "Perfection".


Or "The Perfect Life".

Or "Expectations of life and others".



She has actually been teaching it to me this whole year.

Or maybe the last 16 years.



More explanation will come soon, as that sleep in is screaming at me to come to bed...........


But at 10:59pm tonight (no alcohol since June 24th, before you ask!) I realised what she meant.




"No one can be perfect. No one can ever be. We all get angry and make mistakes".



Hmmmmmmmmmmmmm


This week I have made massive mistakes with some people, been loyal to others, stood up for my values and been abused.


A mixture of positive and negative really ............


So just like some other recorded times on here.



My level of emotional intellect and knowledge changed when I learnt that my child was going to die.

We are now into our 10th year of supposed Palliative Care.



Best not to give me anymore extreme/major emotional baggage about people outside my immediate family, if you are not prepared to help or doing anything about it yourself.

That is Lesson Number 878.371.




As we end one child's first year of High School and I find myself questioning the importance of social stance and personality excellence compared to academic excellence.....

I am reminded of my own final day of Year 7..........

As the teacher announced it would be her final day at the school.......

I stood up and applauded in excitement....... ALONE.



My mum was called in for a meeting.



Does the apple really fall far from the tree with Tom and his supposed BIG personality?

He has done NOTHING like that!
LOL

(I unfortunately have many more stories about myself").


He has parents ringing me asking me if he is going to parties.
"If he isn't, my child isn't either".



He is repulsed already from cigarettes and alcohol because of me.

He and his father could stand up in a court of law and fight a battle for days, defending each others clients.

He hates drugs because of someone else close to him.



I think he is going to be fine.



Is anyone ever perfect?
Doesn't everyone make mistakes?


Or do some of us just stay honest instead of ignoring and withholding the truth?


Does it help us decide true friends that know and/or see it all?

Does it help us improve and/or change ourselves?


Or do we just accept who we are?


Constant analysis, observation, understanding and acceptance as we work our way through every individual we encounter in life, I think leads towards perfection.



But no one will ever receive the certificate.

It may lead you, but no one will ever reach it,
Even though many think they have........
(especially after alcohol or marijuana!).


Perfection for one will never be perfection for another.


If you walk into a room full of 100 people, would you genuinely like and get along in an everyday situation with every single person?

No.

So how can you expect 100 people to genuinely like and get along in an everyday situation with YOU?

A constant life rule forever maybe.

xxx

Struggling Post 113456

Hello anyone that still reads my crap!

This could be an incredibly confusing blog or one that could receive a nobel prize.

Lets go with the first thought.......

We will begin with Amelia's "Make a Wish".

Unfortunately I did what I always swear I would never do....

"Happy Facebook!".

The pressure to make "JUST ONE" wish is a lot on the actual person and family surrounding them.

As many of you know, Amelia decided to finally use her wish to meet Ed Sheeran.
That couldn't happen.....
And lots of potential wishes happened in between!

The final result was travelling to Sydney to see a television show that Amelia adores called "The Living Room" on Channel 10 being filmed.

Seemed easy enough!

As we arrived at the airport and unpacked all the bags, I asked where "Amelia's backpack" was.

My job was Amelia............ and Scott and Tom's was themselves and all bags into the car.

End Result?

No insulin, finger pricker or monitor for Amelia.
No Ipad.
No sunhat, sunglasses and sunscreen for Amelia.

The fury I was feeling was alleviated when the Qantas check in lady left her desk and insisted on leading us towards a fancy lounge WITH SMORGASBORD breakfast!

(Thank goodness for a second Type 1 Diabetic with insulin, monitor and needles!).

On the flight they stopped all entertainment (TV and music) to announce about "the very important person on board by the name of Amelia Nicholds".

Her squealing for the next 10 minutes showed the rest of the plane it was her.

When we landed, Scott and Tom chose to go and get our luggage while Amelia and I were treated like royalty in the cockpit with the pilots.

As we arrived to meet Scott, he said "Our taxi driver said no one is allowed to exit these doors, so we exit further along. We have spent the last 10 minutes watching people exit THOSE no exit doors".

We left through those doors.

The driver then proceeded to tell us about his views on the pathetic economy in our country and his NO CARE for the horrific bushfires nearby.

WELCOME TO SYDNEY!

Our hotel and the staff working there were phenomenal.
They treated us like royalty.

We only had Tuesday, Wednesday and Thursday to do everything.

Wednesday was totally "The Living Room".

So Tuesday I devoted to "Bondi Rescue" as Amelia and Tom love watching the TV show.

I was adamant to get them to Bondi Beach.
It was our only free day.

We arrived to "HIGH SMOG ALERT'.

"ASTHMATICS MUST STAY INDOORS".

Scott is asthmatic.

I can do it, I said.
I can get them to Bondi.

We were staying in Surrey Hills.

HILLS.

I repeat HILLS.

MANUAL WHEELCHAIR.

We get to the bus stop 1 km of HILLS away and wait for the correct bus.

(Thank you Tom for your new found biceps!)

We travel the 45 mins to Bondi Beach through curvy streets, with Tom and I standing next to Amelia.

I get car sick.

Something I suffer in extreme situations.

I begin leaning against my arm holding the handle above......

"Mum you WILL make it" Tom begins.

"Mum are you ok?" Amelia asks thinking that I am unconscious!

As we reach the other end both kids assist ME off the bus.

We sit and wait while I have my head between my knees with a vomit bag.

"Do not text your dad about this" I announce to Tom.

You heard all the good bits about Bondi on .....

Amelia's Project

but this story is about the other stuff.

We decided to eat lunch after I recovered, undercover near the lifeguard tower shown on TV.

I immediately apologised to both children that I would be delivering them back to their father STONED due to the man who knew EVERYTHING smoking joint after joint nearby.

"We will need more money for munchies tonight" I may have said.

We got Uber Eats that night and it was soggy and crap!

(The kid ate a normal amount).

The next day was "The Wish".

We ate breakfast 2 doors away and then returned for "make up" and "hair".
A beautiful person that had donated her time for Amelia.

AMAZING person actually.

She had travelled 1 hour just for Amelia.

We arrived at The Living Room and were introduced to the stars quickly.

They were awesome.

Friendly, welcoming and inclusive.

Then they disappeared for filming.......
Understandably!!!!!

For the next 4 hours we looked at the back of Salvation Army Volunteers as they "pretended" to pack hampers for families.

We COULD NOT SEE the stage or hosts.
We could barely hear the talking.

4 hours of Amelia's actual wish with Scott and I joking around to relax and ease the issue.

So...........
On December 20th, we will be watching the show with you!

BUT Amanda Keller came up to me at the end and said "You have no idea how honoured we all are that SHE chose us. Please come back after March for a normal filming".

Amelia chose the Christmas Special as her wish because everyone leaves with presents (like an Ellen or Oprah show).

That did not happen.

The first time in her 8 years of watching that it did not happen.



That night, we bought 2 minute noodles for dinner at the convenience store up the hill, as everywhere else had steps or was fully booked (we walked for 90 minutes first).

The day after, we were meant to have a special tour of Taronga Zoo, but due to the continued smog, I explained that I could not do the hill of Taronga Zoo without Scott.

We went to the indoor Aquarium instead.

A beautiful Dugong was stuck in a 3 x 3 container looking incredibly depressed.
I filed a complaint.


We were lucky to finish with dinner and a ferry ride from Darling Harbour to Circular Quay.


My positive overall was "SEEING TOM" again.
My Tom.

The one who talks and makes eye contact.

Year 7 has brought a major change that is hard to live with.



As we left with all of the positivity I had GONE, the Qantas check in lady JUST CHECKED US IN.


Scott, Tom and Amelia walked away to find "Gate 20".



I may have stayed behind asking.......

"But aren't we meant to go to the lounge?!
The one with the smorgasbord?!"



"No Lounge obviously today Amanda. Just walk" Scott said.




Did I mention that Miss Lana passed away in Texas yesterday?

She had A-T and was Amelia's age.

She was amazing and Amelia's twin.

I am struggling to cope with this one.

There have been about 11 amazing and beautiful children Amelia's age now, since she was diagnosed.

xxx

Changing Lives Part 2

Hello Gorgeous People,

Recently I received a letter in the mail from a therapist that worked with Amelia from before her Ataxia Telangiectasia diagnosis (2010)  till about 3 years after.

She put in applications for equipment and home modifications in such a subtle, gentle way that the future of Amelia's diagnosis was still able to not be fully absorbed by me.

All I was able to remember from the day of diagnosis was "go home and cherish her".

I was not thinking of the inbetween.

The decline.

The ramps that would be needed when she became wheelchair bound.
The shower chair when she could no longer stand in the shower.
The kitchen table chair to stop her from choking when she could no longer swallow properly.

She was still walking, talking, dancing and ALIVE.


The room full of doctors just told me she was going to die soon.



This person set up our house so that we had everything we needed for what was to come.

She became a friend and a supporter through the transition of "normal" child to "exceptional" child.


This letter said many things, but ended with........

* congratulations on the many successes that you are achieving - individually, as a family and for the wider community.

* thank you for helping me to "keep real". To stay motivated for the therapy students I now teach and ultimately for the people they will work with.


As a person older and wiser than me, I always admired this person and have taken great comfort and am immensely flattered in her words.

_______________________________________________________


After my most recent blog, a friend said to me "I do not know that kind of world".

BUT everything with everyone is relative.

Pain and sadness is equal, despite the massive differences in circumstance.

If you have never felt the kind of pain, sadness, stress and hurt you are experiencing, then it is relative to people that live a life like mine.

Witnessing your child go through their first heartbreak is relative.

Because the tears and the struggle to breathe are equal.


"I am so sorry. What I am experiencing is nothing compared to you" is said to me on a daily basis.

But it does compare, because it is relative to your life.

_________________________________________________________

Tonight I received a message that I have been given permission to share......


I just logged into Facebook and read your post from 3/12/19 in regards to dear Toby and Amelia.

I am facing some of the most challenging issues in my little world at the moment and I am so emotionally fucked and mentally drained, to the extent of finding myself sitting at the top of Olivers Hill with a box of pills recently.

Then I read one of the most powerful, raw and heartbreaking blogs.

I am now in tears as I am reminded of how fucked up this world is and so overwhelmed by the impact that your strength and Amelia's attitude has had on me.

For what it is worth, thank you for sharing your personal journey and please know that you have helped me in a way that I cannot explain.

I feel so selfish and my pain is a drop in the ocean compared to yours and Toby's mum.

But I need you to know that I am always here for you and I am so proud of Amelia's strength and resilience.
You and Scott are an amazing team and should be so very proud of yourselves.

Amelia is a kind, caring, thoughtful, intelligent and beautiful, inside and out, young woman because of her mum and dad.

You truly have had a huge impact on me.


_________________________________________________________

Many, many people read the last blog and it was shared multiple times, to hopefully reach people like this and in a horrible moment like this.

Hopefully people are remembering in bad situations to dig to the very pit of their stomach and to the very far most point of their brain to find a positive.

_________________________________________________________

Amelia is one of many that has been placed in this Universe for a reason.

To change peoples lives for the better.

My purpose in life has become the one to communicate what Amelia teaches me and what I learn from living this life through my own eyes to all of you.


_________________________________________________________


Today,  another 10 year old boy passed away from Amelia's school.

Cardiac Arrest.

R.I.P Shiraz

xxx

Changing a Life

Hello Friends,

Recently Amelia went through a sad and negative stage.

A stage where she became "fed up" with her life after receiving ANOTHER diagnosis to add to the list.

"I am having bad thoughts" were her exact words one night.

In her individual way, she was semi-suicidal and wondering if the future was really worth it.

We sat down with her and talked.

We organised time for her to speak to many around her that she adores about what changes could be made to help her appreciate and enjoy life as much as humanly possible again.

We talked about the all negatives and how to deal with them in the best way possible.

We let her be sad.
We let her cry.
We let her be angry.

We convinced her that it was finally time for her to seek professional help for her Mental Health.

When people asked her how she was going, she would say "I am dealing with my Mental Health right now thank you!"
LOL

I am happy to report that the "bad thoughts" have passed with the help of carers, friends, working with Horses, Kangaroo Joeys, making scrunchies and medical staff.


The earliest Appointment I could get with a psychologist was late January.........
So till then we wait for more help.

_______________________________________________________________.

One of the negatives we spoke of, was the sudden decline of one of her friends at school.

Amelia mentioned it was hard to watch her no longer walking, eating and struggling to speak.

We reminded Amelia that this is how everyone felt when similar things happened to her 9 years ago.


________________________________________________________________


Last week Amelia's school announced the passing of another student.

A mother that had to make the decision "to turn off the machine" by herself as her husband had already passed away.

Being the parent of a special needs child is a world that you struggle to live in.

I am feeling all the emotions for that mother.

Knowing one day that will be me.



As I dropped Amelia to school today , I saw staff wiping their eyes and wearing clothes perfect for a funeral.

"He was just so happy and he was just a beautiful boy" a staff member said.

He was 10 years old.

I walked to the car and cried my eyes out.

_________________________________________________________________


This past weekend Amelia spoke again about the decline of her friend.
How the child was sad and angry in class.

I chose to sit down and speak honestly to her about "that friend".


"Amelia I have to talk to you about your friend.

The doctors have said that they may not have long"


Amelia silently stared at me and just said "oh".



"I need you to REALLY be their friend right now" I said.


"How?" Amelia asked.


"Say hello to them,
smile at them,
put your hand on theirs when they are sad.

I want you to be the happiness they look forward to when they come to school.
I want you to make what time is left AMAZING" I tried to offer.



"How do I do that?" Amelia asked.



"In any bad situation in life you dig to the very pit of your stomach and to the very far most point of your brain to find a positive.

Think of your own plans and life right now and how they can join in your daily life in the coming weeks.

Have fun outside of school as well as inside!

Ask them to join you in your next hair colour change. We will do theirs too!




"But they are still so young. They cant die." she stated   (not remembering her own fate).




"You can live to 90 years old and have hated your entire life", I began.

"Family, friends, work, housing, clothing and food have always been depressing and a battle.

You can live to 18 and have been surrounded by so much love, happiness, friendship and laughter that this 18 years are something the 90 year old will never experience.

A life worth living and full of goodness.


Who lived the better life?


We can all change people lives with a smile, a message, a laugh, an invitation for fun and some effort to improve someones else's situation by helping them create an amazing life.

Rather than just thinking and doing something for just ourselves, it is a win/win doing something small for someone else.

We feel as good as they do" I explained.

Amelia came home yesterday and said I made sure we had fun today and we laughed lots.
I loved it.

________________________________________________________________


As I drove away from Amelia's school this morning with tissues wiping my eyes thinking of a 10 year old's funeral, I reached to the pit of my stomach and the far most point of my brain to find my positive for the day..........

This is what I found.........

As we were driving to school , twenty minutes earlier, Amelia suddenly squealed and yelled "Ha HA!!!!!" as she realised something.



"I CAN CHANGE PEOPLE'S LIVES!!!!!!!!!"


Yes.
Yes you can.

I first learnt it 9 years ago.......
With yours.



But Miss Amelia if only you knew of the hundreds of lives YOU have already changed for the better.

Mostly mine.



R.I.P Toby.
May you fly high and beyond.

xxx