Strong?

Hello.

What I am about to write challenges those that believe I am strong.
It will create a a divided opinion on me as a person.

It is me though.

This year I have crept slowly into the chemical imbalance that is "depression".

My work situation could not have been any less ideal.
To accept a position that many others have left was always going to be a difficult role to take.

The battle to accept that I was no longer the main carer of both kids was harder than I imagined to accept.
Scott was amazing as a "house husband", do not get me wrong, but I was no longer the go to person.
I was no longer the person to check on them in school and be the first to hear about their day.
Instead I was the exhausted one who came home crying because I could not defend myself in the work politics arena.

When Scott and I reversed the role reversal, I did not easily slip back into my role of housewife and mother.
The old routine has not come back to me easily and Tom's diabetes throws a spanner into that anyway.

My Dad had a long stay in hospital and is still not better.......but at home, at least.
My Mum is not well either.

The past fortnight I have steeped lower than I have ever been.
I am just so sad.
My mood....everything.
I am just exceptionally sad.
I have tried many things to "get out of it" but nothing is working.

I think the final straw in this battle has been the suggestion Tom has "coeliacs disease".

I know many of you, with knowledge in this area, will say "It is easy once you learn".

I realise that.
But, for me, it is another diagnosis.
Another sadness for a child in our family.

Another diagnosis.

It seems every time we move through a difficult stage, this baseball bat comes and hits me in the head.
WHY ARE YOU COPING? GET BACK DOWN THERE.

I thought when we were told to "go home and cherish Amelia. There is nothing we can do" would be the lowest of lows. And lets be honest a statement that is everyone's worst nightmare.

Then once we found positives, there were extreme highs.
Media attention (papers, magazines and T.V.) Disneyland, new car, car conversion, medical equipment.
Everything was going to be ok.
These people love Amelia as we do and will support us through this.

Then I lost some very close friends through disagreement.......extreme low.

Amelia's acknowledgement of where she "belongs", new friends, T.V. commercial, Tom developing into a very kind and clever person.......

BAM - Tom's diabetes diagnosis at 5pm last Christmas Eve.........extreme low.

Now possibly coeliacs disease.

Most people will not understand why I am struggling.
Most people would not understand my sadness.

When you live with Ataxia Telangiectasia and Juvenile Diabetes every single day, it is hard.
Sometimes too hard.

When he battles his needles and argues with you for 30 minutes every morning about where to put the needle.
When he has to watch the amount of fat and sugar he eats and count the carbs.......
When he cannot leave the house and get something "appropriate to eat", like parties, BBQ's or resturaunts.
When he goes to sleep and you do not know if his "levels" will get him through the night.
When a teacher will not let him "test" because he/she does not understand.
When he says "I hate my life" because he has diabetes.

When you have to shower, toilet, feed, dress.....double click the bloody ipad 2 times for her.....it is hard.
When you cannot even bloody understand your own child talk anymore.
When you have in your memory a beautiful, happy, magnetic little girl that was so innocent and had the world at her fingertips....
When her mobilty, speech and friends (because they cannot cope) are ripped away from her.
When her comprehension becomes so slow and yet she is still intellectual enough to mourn and grieve for that part that has slipped away.
She becomes angry, sad and fed up.
She asks "why me?".
She yells at me "do you know how hard it is to be me?".

No.

But I know how hard it is to care for, love and look after you.
To make you my whole world.
To make myself responsible to give you the most amazing life I can possibly give you in the time you are with us.
To make myself feel guilty for every moment of every day that I cannot offer that to you.
To know that I am trying so hard to push myself to my absolute limit to give you what you deserve in the short time that you are here.

I only know that side.

Very deeply.

It goes beyond sad.
The depression goes deeper.
 
When you hear about possible treatments and studies that are still "developing".
FOR FUCKS SAKE.
Why are they still developing?
She is going to be dead (literally) before any of them eventuate.
Is it money?
Is it time?
Is it that they do not know where the hell to look?

All of this accumulates and catches up with you.

So if you think that I am strong....
please don't.

I am just like you.

All I ever wanted was to have a happy life with Scott and to have healthy children.

I do not think that is too much to ask.

Yep

Hello long lost friends.

It has been a while and there are multiple reasons for that.
Struggling to know where to begin.

Lets put it in point form......

1. Scott is working full time and I am home full time again.
Bigger adjustment than previously thought.

2. I have been trying to re-establish myself at the kids schools.
 I like them to know that I am involved and to hear how they are going.
(This is still at developing stage).

3. Attempting to get the house to a stage where I like it.
Lots of rearranging, moving, tidying and organising
(ALSO still at development stage- you will see this LOTS!).

4. My dad had an unexpected visit to hospital.
 (Very emotional, time consuming and scary. I was the "go to" person for various reasons during this time).
He was in there for approximately 4 weeks and is still not better.
He is taking lots of drugs.
(lots of stories of how funny he thinks he is at later date).

5. Tom shows that he is carrying too much on his little shoulders for an 8 year old.
Book Psychologist.

6. Amelia says "I cannot see properly. I think I need glasses".
Book Optometrist.

7. Finally have meeting with Tom's new medical team and discover we have been taught NOTHING that we should have been taught.
Tom needs blood tests and optometrist to see what damage (if any) has been done to his body.
(referral still on noticeboard)

8. My 40th Birthday AND Party.

9.Amelia needs glasses but Tom doesn't.

10. Tom's psychologist is awesome.

11. Dentist visit.
Tom is fine, Amelia has the signs of gum disease AND screams the place down because she is petrified.

12. Hear about a medicine that is helping an A-T child in America.
See Video evidence.
Research and see how it helps many things that A-T destroys.
It is illegal in Australia.
Medical Marijuana.

13. Amelia forgets to wear glasses to school.
"Don't worry mum. I am a rebel. We don't follow rules in this house".

14. A medicine in Italy helping A-T children .......... through unorthadox trials.
Betamethasone (a steroid).
Steroid cannot be taken normally.
Blood needs to be drawn from child, rinsed, steroid stirred through, blood inserted back in child.
Qld A-T clinic hoping to be part of more ethical trial.
Amelia would need the "procedure" once a month....... in Brisbane (3 hr plane flight from here).

15. Amanda goes to see Osteotherapist.
She comments that Amanda's body seems inflammed from neck to toe.
Notices shoulder is out of socket.
"You are 1 lift away from serious injury".

16. Due to mum being shit house atm, Tom does not take money for school disco.
He gets handed an ipad and is left with it unsupervised (at school).
He googles ALL of our names.

This includes Amelia Nicholds.

Take a breath.

Amelia and Tom are not ready for the truth of Ataxia Telangiectasia.

Tom then counts how many photos there are of Amelia online COMPARED to him.

He does not READ everything there is to read.

Tom comes home and complains that we have put more photo's of HER than HIM.

17. Scott arrives home from work to Amanda sobbing.
Tom is screaming and sobbing (because mum is).
Amelia has headphones on watching a Minecraft video.

Amanda decides depression has arrived/

This blog is about Amelia.
SHE IS FINE.

(Footnote : All clothes and dishes have been cleaned during this time.
There has been food placed on the table during this time - no comment on WHAT.
Children have NOT arrived at school on time everyday).

 Evidence that Amelia IS happy

 My dad and I at my 40th.

 My beautiful friends at my 40th (at a trampoline warehouse)

Miss Amelia with her glasses.

Just remember the WHOLE family is affected by A-T, not just the child with it.

xxx

(Footnote 2 : Amanda will remember many more things after pressing Publish).