4 Years since Amelia was Rediagnosed

Hello.

This week marks 4 years since Amelia was rediagnosed.

Below are my status updates on Facebook during that week.
They are short and sweet... (well not totally).
It does not include the pages and pages of comments.......

Very hard to read but grateful that I was not alone.
As well as Scott, family and friends, my Facebook friends got me through.


November 25th 2010

Gutted..... absolutely gutted. After 4 years the ball starts rolling again for a diagnosis. In the next 2 weeks Amelia will be admitted as an inpatient for an MRI and lots of tests. They will now be looking for metabolic and neurological disorders which have a high rate of deterioration over time. She also showed skills not consistent with cp. Very scared now.....

November 28th 2010

Just rang the hospital. They said it will be a few days before I find out when we are going in. Trying to organize 4 specialists in the one room at the same time is quite difficult apparently.....damn. I just want it over.

November 29th 2010

Ok..... If there are beds available, we go in Monday for an MRI and lumbar puncture and take any blood tests needed while under anesthetic. Tuesday we get results and see any specialists we have to see based on the tests results. Relieved now that we have a day. And all your love and support definately got me through the weekend......

December 1st 2010

Today is a moment in history..... Glee karaoke on wii is released today. I will be able to finally realise my full potential as a singer. ( Scott and the children apologize to our neighbors in advance....)

December 2nd 2010

What a beautiful send off the school gave Amelia..... Both of us crying.

December 4th 2010

 I have a sign that says "The Good Life". Amelia called me over and said "mum, we are not having a good life". ( my heart sinks ). " why sweetie? I think we are" I say. " cause we have Tom mum".......and here I was thinking she thought because of her own difficulties !!

December 5th 2010

1. Sooo very proud of Amelia. No fighting the anesthetic.... Just co-operated. Now we wait for her to come out.

2. She may have gone to sleep happy but she definately did not wake up happy. Very distressed by the drip in her arm and says she feels "yuk". Oh dear.....

3.She must be feeling a bit better..... She wants macca's !!!!!!! Lucky it is just downstairs !! 

4.  BUGGAR..... Just got told we will not get any test results for WEEKS.....

December 6th 2010

1. Omg..... Absolutely f'n huge...I am shaking.... I have just been told i definately DO NOT have a child with cerebral palsy. Amelia's balance is what causes her so much difficulty only ( which apparently affects her speech). Now to find out whether it is a rare disorder that slowly kills her balance or something that can be cured......

2.  And Scott wasn't here when they said !!! Damn!!

3.  4 hours sleep.... In our room, a baby with a severe cough connected to beeping machines, A mother snoring and the helicopter pad right outside our window..... Oh and yesterdays news still processing.

4. she is a puzzle" a specialist just said. It can go either way now she said (after my persistent questions). It could be something much better than cp or much worse. More tests maybe and weeks to find out. Mmmm

5. MRI result back. Not good. Talk later when we know more........

6. I just cannot stop crying now.......It is not good at all. 7. Everything I had hoped for is not happening.... Just the opposite 8. Ok.... Amelia's MRI results came back. There is brain tissue missing at the base of the brain that was there 4 years ago in the original MRI. The part that is gone can never be retrieved. They do not know what is eating away at her brain or how to stop it....... 9. Staying again tonight. More tests tomorrow. I cannot possibly express my gratitude enough for all your comments, love and support. I have told them I am not leaving until they have done everything they can possibly do. I do not want them to send us away and then forget about us. Test results will still take weeks though. December 7th 2010 1. She is always happy! She has no idea what is going on. We are making sure all discussions and tears are done away from her.  2.Got told last night to start to start preparing ourselves for the worst. It is highly likely it will be a rare degenerative disorder that there is no treatment for. So I said to Scott " let's make her life amazing. Take her to Disneyland". 3. Staying tonight again.... 4. Fuck the diet........ December 8th 2010 1.Scott asked tonight "are any of the things you are looking for life threatening?". She said "yes". 2.Big day of tests, some require sedation. 4 departments involved now. Developmental medicine, genetics, neurology and macrobiotics. But may be coming home late today. 3.Please know that I am reading everyones messages even if I do not have time to reply.... Love to all..... 4.On a positive note we had a Christmas concert last night from Amelia and her new best friend, Ashton , because both have missed their school Xmas concerts this week . So cute and funny !!!!!      5. Amelia's slowly woke up out of sedation to the clown doctors performing in her room.... December 9th 2010 1. Lots of tears today. Blood tests taken for many rare disorders. Skin/muscle biopsy taken from her arm, nerve/muscle test and a thorough eye test. Results will come back end of January.....had a very emotional moment when I heard about the "dedication" done at amelia's school concert. How I wish she could have just been there and everything was just back to the way it was.......... 2. Big meeting with all departments this afternoon. Tom's last day of "little kinder" and I can't go. And the crying starts again. I am so scared about this meeting...... 3.  Thanks guys. Meeting at 3. Have a bad feeling......... 4.Going home with a probable diagnosis. Not good and no cure or treatment. We start living amelia's life 10 fold immediately....... Before we lose her.......  xxx

Climbing the Ladder

Hello.

I do not know if people realise, but writing on here is a very intense process.

Sometimes it is "oh shit. I have not told them about Amelia lately".

But sometimes it is an emotional cleansing from my own brain.
It is revealing thoughts that people do not normally tell anyone.
It is maybe only me that ever thinks AND feels such intense emotions.

These ones can be very draining.
I quite often need to be alone or go to sleep afterwards.

Explaining it makes me feel like a character out of The Twilight Saga almost !!!!

Today I wrote the following post, in response to someone, on Amelia's Project page on Facebook......

We struggle with "the strength". The weight of it is sometimes so consuming and debilitating that we fall over and cannot get back up. I personally then attack myself for not coping and then that only pushes me further down. It is a very dark and lonely experience. I almost hospitalized myself last week but after finally finding my words for the blog and realizing some of what I needed to deal with ....... The comments, messages and calls from others and the cotton wool care from Scott, I realized I was the lowest I could go. This afternoon I began tackling my "roster" and with everyone's words and support from others (including yourself) I have begun to see some light. I cannot possibly explain how that has pushed me to reach for another level higher xxx

Whether it is depression, bipolar or just our circumstances.....I have moments.
I have times where I am high and times where I am low.
Times that are very apparent since Amelia's diagnosis, which makes me think a combination of all three.

This low has been the lowest I have ever been.
I really struggled with this one.

This time the self loathing, non-deserving and regrets of friendships lost, took over.
This time I struggled to function.
This time I thought I was at a point of no return. 

But writing the blog on Saturday night, reading all of the messages, texts and listening to my voicemail helped.

But looking at Scott's face on Saturday night.

I cannot describe it.
The look of despair.

I do not want to be "that person".
I do not want to be the person who gets that kind of look.

I made the roster and followed it today.
I put music on and looked around to write down positives.

But you know what?

Those things would not have helped last week.

I needed to hit the lowest I could go for this journey before I could recognise what is going to help me climb back up.

Hit the darkest, loneliest place in all of humanity and realise there is nowhere to go but up.
It may take days, it may take months.

Many people struggle with it.

Thank you to those that told me I am not alone.
Your secret is safe with me.

I am starting to climb up that ladder now.  

xxx

Thank you

Hello.

Thank you for reading and commenting on last night's entry.
It is something that has been building and I have been unable to articulate it until now.

Thank you for your calls, messages and contact directly with Scott (he will not leave my side!).

Thank you for being non judgemental and accepting my current thoughts in this difficult life we lead.

I am going to now attempt moving forward by addressing the bulk of the issues.

I am going to make a chart for myself, setting out a routine for the week that allows for "downtime" while the kids are at school.
I am going to finish arranging this house to the way I know makes me relax.
I am going to begin spoiling myself again with books, movies and favorite TV shows.
I am going to plan meals and snacks that puts a smile on everyone's faces.

I am going to make a chart for Tom that may minimise arguments over insulin needles.

I am going to spend more quality time with Amelia.

Finally I am going to address the way I feel about myself.
My self esteem needs improvement (or I actually just need some!).
Try to stop the self loathing that appears every time a friend disappears or a disagreement occurs.
I am going to learn to accept that we think differently than the majority of those around us and some find they cannot connect with that.

I am going to begin making a list of positives daily.
I am going to "stop and smell the roses".

Thank you for being there.

xxx

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).

November 2014

Hello Everyone.

I have been wanting to update for so many weeks now but have had trouble finding the time.
Scott is back at work and I am finding it difficult to find my "niche" again.
There is so much to do and so little time.
My dad has also been in hospital and I found that he became a big priority in my day.
Normal jobs combined with "get house back to Amanda way" jobs, kids wanting me to spend time with them at school and exhaustion.
Pure and utter exhaustion.

I am looking forward to just being able to relax for a couple of hours.....when everything is done!

Amelia is very happy but still keeps calling me dad.
She points out what DAD does compared to what I do.
She vomited each morning when we made the initial changeover but has now stopped........thankfully.
Tom is very cuddly and keeps talking about "mummy and tom time AND daddy and Tom time".

Recently we have endured dentist visits, doctor visits and this week an eye check.
Amelia has been complaining of a sore tooth and feels that she needs glasses.... "I cannot see properly anymore".
Tom needs these checks for his diabetes anyway, so we all go together.

Amelia had to attend a "dressmaker appointment" the other night.
She is going to be "a junior bridesmaid" next year.
She has researched her own dress style on the Internet.
She has chosen the exact length and color of her dress.
When the invitation was extended for me to attend the preparations she firmly said "NO. This is my special time with the bride".

Amelia still has so many fears but is also displaying so much confidence and independence.

Halloween happened to be my 40th birthday.
Amelia ONLY wanted to discuss Halloween and how many sleeps till the big day arrived.
Tom thought "mum's birthday" was more important!
She researched costumes and where we would be trick or treating.
In the days prior she had me shopping for all of the costume pieces!

We have changed Tom's medical care team and are extremely happy with who is now looking after him.
The relationship he has with Amelia is now both positive and negative..... (negative for parenting!)
They are SO close and get along SO well that it can be difficult to separate them at bedtime.
(GET OUT OF HER BED TOM AND GET INTO YOURS!)
Tom ALWAYS chooses to make Amelia laugh hysterically when I need to get her dressed each day.
Seriously Tom? Right now? Could you not have waited ??!!

On Halloween, Tom emerged from every house and ran up to Amelia "Here I got this for you. I saw your favorite chocolate in their bowl. I told them that you are in a wheelchair and that I needed to get it for you".

No words for the type of person he is becoming.

Finally......
We lost another A-T child today.
Her name was Liv and she was only 13 years old.
13.
Amelia is 11.
Liv had the flu last week and ended up in hospital.
She died 24 hours later.

Having a child with an illness like Amelia's is a very lonely path.
Friends come and go.
But no matter how many friends you have, we are still the parents of an amazing little girl called Amelia.
We are the only ones who nurse, care for and watch the decline......
We see others battle with their own A-T children online.

Every single day we watch and do what no parent should for a child Amelia's age.
We watch and wait for the future.

Today is too close to home.
It reminds us of what will occur in our future.
It reminds us of how it can happen tomorrow.

Keeping sick children and adults away from Amelia is paramount.

I have seen children at Amelia's school that are sick.
A school that has many children with "a life threatening illness".
The parents STILL send them in sick.
When I see these children in Amelia's class, I take her home.

I am not ready to say the final goodbye.

I have shed so many tears for this family in America today

xxx

 Melbourne Cup Day

Similar to the Bridesmaid dress Amelia likes

 Halloween

 The new pet

 Royal Melbourne Show

 Black Shadow

Halloween.

Role reversal - reversed

Hello everyone.

Tomorrow is the start of  "role reversal - reversed".
Scott begins full time work again.
His best friend has been able to get him a position at the place where Scott originally got him a position.

I am so proud of the effort and achievement he had through being an "at home dad".
The kids have loved having him at home and will need some adjusting to get used to having him gone again.

One example is icecream.
Scott regularly gives the kids ice cream after dinner.
I don't.
The other night while watching TV, I announced "shower and bedtime next ad".
"But I haven't had ice cream yet" Miss Amelia said.
"You do not need ice cream tonight Amelia. We are not going to have it" I said.
As I walked Amelia down to the shower, she repeatedly said "You have hurt my heart".
In the shower she said "You have broken my heart".
She said it over and over while looking at me with "puppy dog eyes".
Scott dried her, put her PJ's on and put her to bed.

I went in to say goodnight.......... with sticky tape.
I started pulling strips off.
I handed them to her and said "these are for your heart".
She looked at me with disgust!

This weekend Scott and I went away to the city.
It had been planned for months.
The original plans were that Amelia was going away on a camp with Yooralla and Tom was going to mum and dads.
My dad went into hospital last week with an unknown condition.
7 days later it is still unknown.
They could not have Tom obviously, so plans were made for him to go to someones house that we happily assist regularly.

We had an awesome Saturday afternoon and night as a "couple".
Yummy cocktails (for me!) and delicious dinner.
Something that we never get to do.
It was AWESOME.
The weekend was cut short on the Sunday but we still had a great time.

Tomorrow we begin another new stage.
Wish us luck.

(If you have been invited to my 40th and have not replied then please do so!)

xxx