Difficulties and Emotions

Hello dear friends,

Many difficulties and emotions come from having a child with a disability and/or a serious illness.

Difficulties include
- house modifications
- equipment needed
- suitable transport
- major loss of income
- who can mind your child/ren and have the capability to look after them
- many appointments both close and far away
- finding activities and equipment suitable for entertainment due to limited access of hands and mind
- finding suitable respite that both you and your child are happy with
- running a house and able body child's life while disabled/sick child wants to speak to you constantly and needs assistance being included

Emotions include
- why her?
- Why me/us?
- I dread what is supposedly going to happen to her in the future
- how will we be? how will we cope? how will we continue living?
- I cannot handle being tired all of the time
- how do I fix the constant pain in my back, shoulder and hip?

- conflict and loss of friendship (with disability and serious illness comes pain and everyday emotions you would never experience otherwise. You learn to advocate, defend, become defiant and opinionated to keep moving forward. You learn to fight. You lose friends for many reasons. It hurts greatly and I struggle to recover with that loss).

- anger
- sadness
- gratitude

- numb

I am not the only one who feels this way and have these difficulties.

IF your child needs a piece of equipment......
IF you cannot pay a bill because you cannot work due to caring for child....
Life becomes a constant battle.

There is no set process for applying for equipment/modifications.
You have ONE government organisation to fund equipment and housing modifications.
They have a set amount and very strict rules.

Once you are on the list with your application it can take years to be approved.

In Amelia's case, she has had the same electric and manual wheelchair since 2011.
She has grown ALOT in 6 years and looks ridiculous in how small they are for her now.
She needs both because of her severe anxiety.
Amelia can mange her electric at school, but needs us to "push" her in crowded and unfamiliar environments.

If you do not qualify for this funding under their criteria, you have to go and virtually "beg" other organisations and charities for assistance.
It is humiliating and time consuming.

Some of us have pride.

Last nights blog was not about looking for pity, support or money.

We have been down the pathway of fundraising and it always ends up nasty as people change during the process.

I am only telling a story, which sometimes occurs through anger and "venting".

Recently I have become quite agrophobic and a hermit.
Occasionally I suffer panic attacks leaving the house alone.

Families that have a child with a disability constantly battle for their childs needs, while also battling everything else that life brings.
Many battle to keep a roof over their heads and food on the table because they have a child with a disability or illness.
Last night I was just trying to vent that.
It is not fair.

Yesterday, Amelia and I rang one of our favorite therapists to say goodbye.
She is leaving her current organisation.
She has been seeing Amelia since she was 4 years old.

I was quite thrown when she said.......
"Amanda, your blog has taught me so much. Because of your honesty, I look at my clients differently now and understand more of what they are going through".

Thank you for all of your messages and concern.
As always, we will be fine.
I honestly did not want or expect such a response.
There is so much I could speak about, but choose not to.
Only when it becomes too much..........
I just need to vent.

Positive reversal and thinking is the key.
Absorbing smiles and laughter is awesome.
Appreciating conversation and seconds together.

Hopefully NDIS will bring great relief as the "one stop shop" for everything disability, and a small part of our lives will become easier.

Spot Amelia in this very first commercial to advertise the new scheme.
https://www.youtube.com/watch?v=UeBFzmMDsxQ&feature=share

Grounding

Hello friends,

Nothing like a grounding to remind you of your life when what has occurred over the last 2 days.

The pre-logies excitement WAS so surreal, but it was also for a reason.

Amelia has not been well.
Amelia is not well.
Amelia will never be well.

Yesterday we attended our local Children's Hospital for another Hydrotherapy session.
A pool that is heated and allows for exercise that heals and helps.

I had to step in 45 minutes into the session due to the look on Amelia's face.
That is all I need to know she cannot take much more.

"Amelia. Do you want to stop?" I asked.
She nodded her head sadly.

"But she said she is ok" the therapist said.

"That is the problem. Amelia is being taught how to say I need to stop now please.

She currently feels like I will upset, anger or offend people if I speak" I responded.

"She will endure an entire day at school without drinking water or toilet if she feels the staff are too busy with others.
She does not want to intrude......or upset as she believes it will be perceived as annoying" I continued.

As usual, they instructed Amelia to speak up.

Another one to add to the list.

After we were washed and dried we went up to Oncology.
Amelia has been battling another UTI post surgery.
Catheters create bacteria and infection and they keep reoccurring post surgery.

I managed to corner her oncologist and explained our absence from the last appointment.
(he has not returned my emails or phonecalls).

We have an appointment every 3 months to monitor whether the cancer is still there or has returned.
(he has already warned me that this particular cancer may suddenly return in the lungs).

He explains how to organise more appointments.
(must always advocate and stay on top of each child's care).

We go to Developmental Medicine where Amelia has been a patient since 3 years of age (she is now 13).
I explain we need help with the current UTI after 3 lots of antibiotics.
No one responds.

We go to lunch.

We organise Oncologists appointments for ultrasounds and x-ray.

Developmental rings and asks lots of questions about UTI.

"Take her to Emergency right now or get her GP onto it immediately".

Amelia hears me question emergency and starts crying.
I look at Tom and wonder what the hell I am going to do with him while he questions about school the next day and the lack of insulin.
Scott works full time!

GP.
We will try with everything we have.

Ultimatum is given. You have 5 days to get on top of it, or we suggest admitting her.
This one has been going on too long.
It may be something else entirely.

Amelia and I are both so tired though.
Urine release is needed every 2-3 hours overnight at the moment.

What do we do?

We decide to give it a few days on a NEW antibiotic.
Last hope.


Tom's T1 Diabetes levels are out of control at the moment.

Just found out our Credit Card has been hacked and blown out by at least $5,000.

Respite money for Amelia is NIL and I am struggling to get funding for more.

I have a $9,500 quote for a new wheelchair for Amelia that has been on my desk since 2016.
Scoliosis is getting worse because the current one does not fit.

Do you know how humiliating it is to apply and be rejected for funding to get this damn wheelchair every single place that you get the guts up to apply to?

Some people have pride.
Some people can barely afford to live (like us) and also afford equipment like this.

Lets look at Dr Chris Brown again.
What a lovely distraction.

Sunday was good.

xxx

DR Chris Brown Letter

Thank you for your enthusiasm about our awesome night last night.

It was a bit surreal waking up this morning and asking "did that just happen?!".

Going into yesterday, I thought seriously about how to make the most of this amazing opportunity.

When I was on The Circle, I made it my aim to create awareness of Ataxia Telangiectasia.

Yesterday I chose to make it my aim to thank this person for making a difference in someone's life.

I handed this letter directly to Dr Chris Brown.

Dear Dr Chris Brown,

Thank you for meeting with us today, especially with Amelia.

We had NO idea that Challenge was organising such an amazing experience for Amelia.

In a questionnaire last year, she listed you as her favourite TV personality.

This will be something to remember for a lifetime.

She absolutely adores you and I am proud to say that you have made her laugh on many occasions.

Whenever she sees you on TV, she breaks into the biggest smile.

But her favourite show is The Living Room.

Every Friday night, she comes home from school and reminds me she has to watch it that night.

She adores the combination of you and Miguel together and laughs a lot during the episode.

We have explained Barry’s health issues and I believe she definitely feels a connection with him.

She thinks Amanda overruling you all is awesome, because she is a female!

Amelia has Ataxia Telangiectasia and we only learnt about it when she was 7 years old.

She used to be able to walk, talk and feed herself.

She can’t do any of that now………at 13 years of age.

A-T is also terminal.

Last year she also got Ovarian Cancer.

A “double whammy” so to speak.

Our son, Tommy, was also diagnosed with Type 1 Diabetes 3 years ago.

He needs 3 insulin needles a day.

I do not want this to be a negative letter.

We are actually a very positive family.

Laughs and happiness are worth a million dollars to us.

I do not write this asking for anything.

This letter is to thank YOU only.

When Amelia was diagnosed in 2010, I made it my mission to give her the most amazing life in the unknown timeframe mentioned.

My motto is “No regrets at the end”.

I have given up work and my husband has been demoted so that we can achieve the emotionally stable life we need for both our kids.

By YOU seeing her today, you have been part of this “amazing life”.

Scott and I met when we were 15 years old.

We never thought our life would be like this.

BUT we are being taught life is not about money, possessions and holidays.

It is about the legacy left behind.

Meeting with you will be with them forever.

Thank you

Amanda Nicholds

Logie Night

Hello dear friends,

I have had so much pleasure sharing with you all the most amazing experience we had tonight on Facebook.

During the week, I was contacted by the CEO of Challenge.
A wonderful "cancer organisation" that organises many things for children, siblings and families that have or have had cancer.

A few weeks ago I had a wonderful conversation with one of the employees there about the amazing things they have done for Tom (camp) and our family as a whole (Sandringham Yacht Club sailing day).
The conversation moved to what has been offered to Amelia.
I was honest and explained that she cannot attend the camps unless they provide 24 hour one on one care and have Tom go too to settle her anxiety.
She said "leave it with me. That is not good enough".

This week the CEO called me and asked what we were doing Sunday.
We had plans for the WHOLE day, but if HE was ringing me, I thought it best to say "Nothing!".

"I may need you at Crown Casino at 4pm on either Friday, Saturday or Sunday" was all he said.
End of phone call.

Rang poor Jason and said "Sorry you can no longer come for a BBQ on Sunday. I have NO idea what is going on!".

The CEO, David, rings me back and says "I need you at Crown at 3:30pm on Sunday. It may be Friday or Saturday too though".

"Ok. Why?" I respond.
"Amelia is going to meet Dr Chris Brown" he says.

I sit down.

"Excuse me?" I said.

"Do not tell her, do not tell anyone. It has to be a huge surprise".

So then began the battle of not saying anything to her.
Amelia and I live in each others pockets.
We know when something is not quite right with the other.
I was SO excited and could not say a damn thing!

So I told Tom.
Then Scott.
Then Meredith and Michelle.
And of course Nicola, Laurie and Kate.
Oh and my parents needed to know of course.
STOP.
AMANDA STOP!!!!!!!!

Then I remembered Aunty Donna told Amelia "If you ever meet Dr Chris Brown, I better be there" 18 MONTHS AGO!
Amelia does not forget this shit!!!
She only repeated the conversation to me again the other day.
She will look at this very famous man and her natural empathy will kick in.
She will look at me straight away and say "But Aunty Donna is not here".

Aunty Donna is asked to come BUT has no idea what she is doing or where she is going.
It is an absolute pleasure to have her come along for the ride.

The dress for Amelia to wear was an easy choice.
I deliver medications to some awesome elderly and disabled people that are unable to get to the chemist every Thursday.
One beautiful, amazing 79 year old soul insisted Amelia have this gorgeous dress 2 weeks ago.
It was like fate.

We have to meet David in the lobby of the Crown Promenade Hotel.

We start driving and Tom says "So where do we have to meet Chris Brown?".

ARE YOU FUCKING SHITTING ME?!?!
I thought I may kill him.

Thankfully Amelia did not hear due to the radio.
(mental note: never tell Tom a secret again though!).

We get to the lobby.
We sit with David and after some small talk, THEY all start appearing.
Logie Night attendees are staying there and beginning to come down to the lobby.
(to anyone overseas, the logies are like the American Emmy"s in Australia).

THEY are walking all around us.
The News.
Offspring.
The Bachelor.
The Bachelorette.
Home and Away.
The Project.
Celebrity get me out of here.
Family Feud.
Master Chef.
The Block.

Tom Gleisner suddenly approaches as he is Chairman of Challenge.
He is SO nice and friendly.
He was so kind and caring to Amelia.
He was so friendly to all of us.

Tom sees Sam Pang and gets him to come over.

HILARIOUS!
Funniest guy.
I was quite proud that I retaliated with a couple of comments, to the point where he gave me a head tilt and smile and continued baiting me! (I may have a career in radio yet!).

The whole time, Scott, Donna and I are like pathetic stalkers pointing out people and jumping in our seats!

Chrissy Swan.
Peter Hellier.
That woman....you know off that show!

Yes. It was a bit like that!

Then HE came.

Chris Brown walked over and sat right next to Amelia and said hello.

Her eyes!
Her face!

She answered his questions beautifully with her body in the stiffest position!
She kept it together so well!

When he left, we had to leave because we were actually in a "logie attendee" only area.

On the way out we met Grant Denyer and Lee Freedman.

When we were all alone at the elevator, Amelia started squealing.
It was a happy noise and the only way she knew how to react, I think!

Scott and Tom had a photo with 2 famous cricketers (Scott will have to name them!).

Poor Donna burst into tears because she was so not prepared for all of the excitement and famous faces.
It was very overwhelming.

We finally arrived at a restaurant.
Everyone is happily debriefing and I look at Amelia.
She is staring into space and smiling.
"What was your favorite part?" I asked.
"What do you think?" she answered laughing.

Dr Chris Brown of course.

 Beautiful Aunty Donna

 Tom Gleisner

 Dr Chris Brown

 Dr Chris Brown.

 Some famous cricketers.

 The awesome man who organised all this.

xxx

Hello dear friends,

(warning: this may be like John Farnham's "Final Tour". He keeps coming back!).

Life is difficult for anyone and everyone.

Some are dealt more difficult cards than others (supposedly), but people always support people no matter the circumstance, even if it has been created rather than naturally appeared.

That is what makes someone a "good person".
That is what makes a "good friend".
Accepting, understanding and appreciating.

Loving people and your connection no matter what.

They do not measure the degree of difficulty someone has encountered against their own, because their degree is relatable to their own life and stage of "hurt" in one lifetime.

A broken arm for a child against a child with leukemia is relatable.
It may be the only stress and pain the family of the "broken arm"  has ever experienced.

They will never comprehend or understand the pain for the leukemia family and that is ok.

To be a good person you support, encourage and understand........or walk away.
To walk away is not bad, it just means you do not connect.

I have walked away from people for reasons other than their own pain.
I have walked away because, as adults, we would never be friends.
Pretending that you are friends is heartbreaking.

Friendship, especially as you get older, is a lot more unstable than those friendships you created when younger.

When you are older, people are supposedly wiser.
But they are also full of judgement and opinion.

We are quicker to discard and dispose of.
We are quicker to judge and create an opinion of someone.

Social media has created the latter, I believe.

Some people (like me) comment on the daily grind, hurt and pain.
I do not apologise for this.
I talk about myself and my children only.

I also invest everything that I am to anyone that enters my life on a more personal level.
I cannot work out how to stop that happening.

Some LOOK at the daily grind, hurt and pain of others.
They look at the daily grind, hurt and pain of themselves and compare it to others.
People forget the relatable.
People forget the only pain they have ever experienced against others.

A good person and a good friend...... A TRUE FRIEND, is there no matter what.
They may back off for a while, but that is ok.
They are still there.
The phone calls, texts and FB comments may not be as frequent.

They do not tell you about all your mistakes towards them.

They do not tell you about all of your mistakes ...... full stop, because they are a "good person" and accept and understand your thoughts and life.

("MISTAKE" is not even the correct word).

They are living their own life and speaking it.

How is that reflecting towards you and your own?

How do you know that they are not suicidal?
How do you know whether they are reaching out for help?.

They do not create a negative thought, opinion or discussion about you and your life.

They just back away for a moment.

I have encountered many people telling me that my blogs and facebook posts are wrong and that they have hurt them .......and that is ok.

BUT as I am starting to learn, it is not about what I write but a reflection on their own lives.

They are comparing and analysing....... compared to themselves.

I cannot walk into a room of 1 hundred people and automatically expect them to like me.
I cannot automatically expect them to like me either.

I only write about me.
I only write about Amelia, Tom and rarely Scott.

So before I continue on the journey that is MY and OUR lives, please consider leaving my Facebook page and our group.
The positive and overwhelming inspiring messages far out-way yours xxx

P.S
I will be turning off commenting on FB after last time.

Thank you to so many that have been here for 6 plus years.
Thank you to those that accept me and understand ME for being ME xxx

Final Blog

Hello dear friends,

This will be my last blog post.

This is not a decision that has come lightly, but one I need to protect my heart.

In the past 6 years that I have been writing, I have felt so much love and support from every single one of you.
You have travelled with us through the amazing highs and the devastating lows that is Ataxia Telangiectasia.

I can no longer handle the negative thoughts and messages from those that are supposed to be friends.
To know that people despise you for writing and expressing has almost destroyed me this week.
I understand that you do not know what I am talking about, but imagine a massive group of people disliking you based on what you write.

Please know that having you all follow our journey has been "the lift" we needed on many an occasion.

I will continue "Amelia's Project page" on FB with the occasional message of how our amazing girl is going.

I cannot please everyone and so therefore I give up in trying.

I can now count my true friends on one hand, because of what I write and post on Facebook.
These areas seems to be the main point of judgement, jealousy and hatred.

Before I go, look at the amazing child in the picture below.

Amelia is my everything.

As well as Scott and Tom.

I hope that she has inspired you all to appreciate and love life.

She is amazing and deserves your love, even if her mum stuffs up a lot.

xxx

P.S. Don't bother commenting on this blog.
It will just make matters worse xxx