The bigger picture

A little girl running ahead of me into school.

Hard to believe that was Amelia now.

So much has changed in the last 2 1/2 years.
She can no longer walk, let alone run.

Makes me scared about what the next 2 1/2 years will bring.
I am too petrified to think about 10 years.

Sometimes the weight on my shoulders is too difficult to try and process.

We try so very hard to do our "very best", but there is always going to be the prognosis for the future.

She will slowly disappear in front of us.

In 10 years there is a BIG possibility that she will no longer be with us.

Our life.......her life has turned out to be incredibly unfair.

 

Sometimes "coping" does not seem enough.

 

xxx

Would the REAL Amelia please stand up.

Hello.

The Amelia I know has kind of gone.
I cannot find her.

The Amelia that I currently have had her ears pierced last week.
Everyone knows that Amelia gets hysterical at even the thought of pain.
Taking off a band aid makes the neighbours think we are assaulting her!

During the week Pa (Scott's dad) suggested that he could pay for her to get her ears pierced for her birthday in a few weeks.
After much confusion, (because she burst into tears and sobbed that she wants to get it done), she became very excited and determined to get it done.

I may have been heard to suggest that maybe this much determination needs to go into getting needles and blood tests!

After boasting to everyone at school the following day that she was getting her ears pierced she arrived home on the bus with anxiety levels at fever pitch.

I confirmed that she wanted to get it done but she was petrified of the pain.

So.........I put numbing cream on her ears (apparently it did not work), gave her nurofen and we arrived at our favourite chemist around the corner.

Amelia obviously did not realise the actual pain that ear piercing causes.
After discussing the difficulty of getting two ears pierced simultaneously with Amelia's constant head tremors and movements, it was decided to do one at a time.

She was almost left with just one ear pierced !!!!

The desperation to get away from our friendly pharmacist to complete the second ear definitely showed marvellous determination.

After many tears and admiring in the mirror, Amelia revealed two hours later while sobbing "It hurt so much but they look so pretty".

Amelia is also changing from my angelic, well behaved child into ......... well someone with a lot more spunk.

This week Scott was assisting her with a task.
As he was helping her she said rather aggressively "I know how to do it......you DOUCHEBAG".

Douchebag ??????

Scott and I launched straight into reprimanding this behaviour but I did have to keep leaving the room so that I could relieve my shock and laughter.

Finally...... Amelia's 10th Birthday.
In a few weeks Amelia will be entering double digits.
My concern is that she has become birthday party planning obsessed.
Decorations, invited guests, food and presents are currently constant discussions.
The middle of the night she gets an idea and has to wake me to tell me!
No "good morning" first thing in the morning......no...... it is another idea to add to her LISTS.
There are lists everywhere.
I am expected to drop everything when she wants to discuss her birthday.

Recently we attended a "disability coffee morning" on one of Amelia's curriculum days.
Suddenly the gorgeous girl employed to entertain the kids approaches me and says.
"Hi. Amelia said she wants a disco party. My friend does disco parties for a business. Can her and I come and do Amelia's party?".

Um.......yes.

Amelia had won her over that much in that short time that this stranger wants to GIVE Amelia a disco party !

Below I have posted a link to this business.

http://www.boptillyoudrop.com.au/

Alicia and Mieke are the angels coming.

Must go, Miss Amelia is requesting (demanding!) we ice the cupcakes we made earlier.

Speak soon

xxx

Update Number 59372618

Hello everyone.
Long time no speak.

At the moment I am suffering a post hangover.
I think that a POST hangover is much worse than just the hangover.
The post hangover means days of tiredness and feeling rundown.
I have a sore throat and a small ulcer on my tongue.
I just want to sleep.

But I am in recovery mode from an awesome weekend.
So many laughs, drinks and food.

Now... do not fall off your chair BUT I am actually going to do un UPDATE on Amelia.
I know...... funny I would actually do that.
But considering the page is in her honour, I thought that I had better!

Amelia is now in Term 2 at her special school.
After having NO days off last term, she has already had 1 off in the last fortnight.

She is very tired at the moment.
Exceptionally tired.

I have begun looking at her food, drinks and vitamins again to see where I can help her have energy like she did last term.

She is not sad, just tired.

Her appetite is not as BIG as it was last year.
I am happy about that.
Her weight gain concerns me.

But it is obvious that she needs more energy and I cannot see what was different last Term compared to now.

Amelia handled my operation really well.
Watching mum sleepy with bloody bandages on could have been upsetting but she seems to have coped with it really well.

She likes to "whisper" to me at the moment if she needs to speak her opinion.
Recently Tom was upsetting her.
She signalled for my ear......
"Tom is a little shit" and then smiled at me sweetly.
I actually bounced backwards in shock !!
We do not swear/curse in this house in front of the kids so I did not know what to say!

The relationship/s with her boyfriend/s is still in full swing.
They adore each other.

We used the hoist last night to put Amelia in the bath.
She has not had a bath for months because we can no longer lift her in.
Last night was hysterical.
Amelia hanging in a hession sling, floating along a ceiling track, giggling loudly while naked.

Scott and I can no longer lift her though.
I have just seen a physiotherapist and am sitting here with a heat pack on my lower back.

Amelia is still extremely happy (despite the tiredness), cuddly and FULL of ideas for her 10th Birthday Party in a few weeks.
I have got pages and pages of what she wants at her party !!

Over the last couple of years, I have learnt that bigger is NOT better for Amelia.
Too many people, too busy, too loud and it is too overwhelming for her to handle.
With what is happening to her brain, she can only process so much.
So I may have the lists of ideas but I will still minimise it to what she can handle.

Mood swings have started occurring.
I find it very difficult to disguise my laughter with some situations recently.
She has been showing a lot of spunk !
But there have also been times when I have had to "speak" to her for being rude to people.
Shocked?
I was !!!!

Music, disco and singing are Amelia's favourite things at the moment.

She likes to sit in a room with the lights out, disco ball on and demand which song she wants from her CD player!
Then she will sit there and sing.
I think that she may be pretending that she is on "The Voice".

Talking of which.........
One night recently we all sat down to watch "The Voice".
It has become wonderful family time.

IT WASN'T ON.

We were all devastated so Tom said "Lets play it".
Scott, Amelia and Tom sat on the couch with cushions on their laps (buzzers).
I sang "I had the time of my life" and was fortunate to get them all to buzz me.
I had to introduce my self and say my name.
Seal (Scott) then said "I felt that I really connected with you then. I would love to have you on my team".
Ricky Martin (Tom) jumps out of his seat and says "I know that I am not meant to do this, but I will do anything to have you on my team" with arms waving, an intense look on his face and even the Spanish accent !!!
Every moment, every word by Ricky was played out by Tom.
Hysterical.

1 hour we "played" this for.

And when Amelia had to choose which team she was going to join, she placed her hand on her chest and said while fluttering her eyelids "I have decided that I am going to follow my heart". (everyone looked at Joel Madden - ME).
 "I am going with Seal".
Gutted !!!!! while Seal jumped on Amelia yelling WooHoo !!!!!!

Do you think we may be watching too much of The Voice ?????

xxx

P.S. In the 27 months I have been writing this blog, it has been looked at over 50,000 times.
Thank you for travelling through this journey with us.

A letter to my Son

To My Dearest Tom,

Recently I wrote a letter to your sister and your dad.

I can honestly say that this is the most difficult one.

Your personality and needs have far succumbed the other family members.

In your six short years, you have been presented with many situations that others will never encounter.......in 80 years.
Scott and my parenting worries and roles of you definately equal (if not overtake) Amelia's.

There are numerous reasons why your "needs" appear to be more......

You have a very BIG personality.
You have no filter in conversation.
You have always been louder and rougher than everyone else.
You can be extremely unreasonable and argue till someone gives up (normally us).
You are demanding and seek attention (in your own way).

BUT.....

You are very mature for your age.
Your persistence and commitment to any task is beyond appropriate for your age.
Your "mathematical brain" blows me away.
You have never told me you are bored or require me to entertain you......you disappear for hours "making up your own fun".
Your kindness and care for very young children quite often contradicts the person you are at other times.
Your love and concern for all animals is inspiring.

BUT the most important thing is your enthusiasm for life.
You love every minute of everyday.
Nothing is ever bad or horrible in your mind.

Many people have difficulty processing your "BIG" personality.

Many believe children should be ruled by strict discipline and know "their place" as a child.

If other children get upset from your behaviour or words, I pounce on you.
I try to correct and explain.
I try to discipline you.
But no parent likes seeing their child upset........so their reaction is expected.
Their reaction is normally one of upset.
But they need to know about the repeated discussions we have with you at home.
The positive interaction about your inappropriate behaviour.

Then there are others who absolutely adore you.
They see a child wanting to succeed, impress and grow.

(But your behaviour can be exasperating at times).

When Amelia was first diagnosed with Ataxia Telangiectasia, you were my distraction.
Your lively personality kept me from crawling into a corner and wishing my own death.

Scott and I decided immediately that you were not to know the FULL details of Amelia's disease yet.
So many adults around us could not handle the basic information.....how could you?
We decided to protect you from this understanding.
Let you live the life of a child.
Let you grow and develop like a child living in a "normal" environment.

We feel lucky with the Primary School we have chosen.
Especially this year.
There are people there that I entrust you to five days a week.
People I know see beyond the "naughty child".
People that see and are amazed by your complex personality.
People that will help me channel you down the "correct pathway".
People that recognise what Scott and I do.
People that love you.

Everyday people struggle with the way you sometimes treat Amelia.
But you need to be a little brother.
You need to have sibling rivalry.
You need to live like a normal little brother for your own mental health.

They may not witness you feeding Amelia at home.
Praising Amelia on any accomplishment, telling her you love her and hugging her constantly.
Everyday is spent getting things for Amelia and assisting her with "tasks".

A lot for a 6 year old, but you choose to do it.

Recently you said "I wish my Milly did not have A-T."

I remember when you asked me to have another baby "so I have someone to play with in the backyard".

One day we will need to have "the discussion".

One day we will need to tell you that your big sister is dying.

But we do not need to have that yet.
Tom, you are six years old and need to process and live and handle what a 6 year old can.
No more.

You may sometimes display maturity beyond your years......but you do not need to know THIS.

Today you came home from your very first day of Term 2 in Grade 1 at school.

There is a piece of paper in your bag that says...
"I Wish I Could Be Famous".

I have absolutely no doubt in my mind that you will be famous Thomas Nicholds.
Whether it be in your circle of friends, community, nationally or globally.
Everything about you could take you so far in life.
It will be a challenge for Scott and I to keep you on a positive pathway....but it is one we are willing to accept.
It would be an honour.

Tom, you have so may characteristics that could take you very far in life.

I do not mean money or material things.
I mean deep within your soul.

To be happy, kind and giving is a gift.
To love life, strive for what you want and appreciate anything is an added bonus.

When you cried recently because someone with a disability "tried so hard", (your words), I knew that even more, you were very special.

While trying to compile this blog, I asked you "If you could have one wish....anything in the world for anyone or everyone......what would it be?

Your answer?

"For everyone in the whole wide world to Live Love and and Laugh. That is what I wish".

Good answer Buddy.

You will live far beyond, Scott, Amelia and I.

Know how incredibly loved you were by us.
Understand what an amazing person you are and will be......even if you feel it disappears for a while.

It will be a privilege to watch you grow and develop Tom.
And yes.......I will DEFINATELY move mountains for you as long as I am alive.

Mum
xxx

A message for the female readers only.

Hello everyone.

Six days ago I had to under go an operation.
Originally it had begun as an operation to reduce my monthly blood flow by 90%.

Since giving birth to Tom , almost 7 years ago, I have been losing a ridiculously large amount.
As well as having difficulty leaving the house (humiliation), it also made me exceptionally tired.

I thought it was the repercussion of giving birth naturally.
I also thought that it was hereditary.

After having to take a day off my new employment in February, I realised it may be something that I needed to address.
I could no longer lock myself away and spend the time at home during these periods (pun intended!).

The specialist that I was referred to also delivered Tom.....almost 7 years ago.
The lasting memories I have of that birth (compared to Amelia's horrendous one) was a good start.

He suggested that I needed an 'ablation'.
It meant that he had to burn the base of the uterus and it would seal it shut.
(Like if you put your finger over a cut, it would stop the bleeding that would then continue circulating around the body).

Recovery would be 3 days at the most.
The procedure would be done under general anesthetic and I would be home late that afternoon.

After dealing with this issue for so long, it seemed to be a massive step but also a logical one.

The operation date was set for 12 days after this appointment.
Scott was organised to be at home with the kids while they were on holidays.

I had to undergo a blood test and ultrasound of the pelvis before the operation.

During the ultrasound, I knew something was "wrong".
I actually rang Scott from the car afterwards to explain the conversation that occurred with the person doing it.

Three hours later the specialist rang me and said "they found a 7cm lump on one of your ovaries. You need to come in and see me".

So 2 days later Scott and I were told about the "apple sized" lump on my left ovary.
That needed to come out too.
Recovery is now 7 days.

Leaving for surgery at 6:20am in the dark was scary.
I tip toed so that I did not wake anyone.

Lying on the stretcher naked, except for a hospital gown, is scary.
I have done it before (varicose veins and wisdom teeth) but it does not get any easier.

No mental stimulation or entertainment.......just thinking.

I did that for 90 minutes having NO IDEA when they were just going to get it over and done with.

As I was wheeled into the waiting room for theatre all I remember is a nurse talking to me.
Then nothing.

I woke up in the recovery room confused.
Has it happened?
But I do not remember going to sleep?!

Then the pressure.
The pressure on my lower stomach region.

Oh shit.
They have done it.
Here we go.
Recovery.

Then I began shaking......almost convulsing.
I wanted Scott.
I was dazed and confused.

They increased the morphine.
A kind nurse sat and held my hand.

I do not know how long I was there in recovery.
The shaking seemed to go on forever.
I was drifting in and out of consciousness.

Then the nurses started discussing my oxygen levels.
I remember many nurses standing around me talking about the levels being low and my breathing was shallow.

In my morphine haze, I remember a nurse saying "Put the oxygen on her. I bet she is a smoker".
I managed to say that I was.
I heard her say "that is why you need help with oxygen".

I remember my feelings changing from petrified to angry at myself.
Because I smoke cigarettes, I am struggling to breathe properly after an operation.

I needed to have the oxygen on till the following morning......all because I smoke.

As if that was not enough reason to quit smoking, the "black stuff" that I coughed up off my lungs the following morning definitely was.

My time in hospital seems like a dream.
Lots of nausea, slipping in and out of sleep, 2 litres of something fed through me via a drip to raise my very low blood pressure and the uncomfortable feeling in my lower stomach.

I remember my doctor coming in and telling me that the lump was much bigger than originally thought. It was also very hard. He believed that it was going to be soft and full of fluid.
In my drug haze he spoke of the much longer operation (90 minutes), longer recovery period now, tests being done on the lump and how I am lucky he was able to get it all out through key hole surgery. He explained that he almost had to make a bigger incision to remove it. He explained that the left ovary had been totally destroyed by it

Once I came home the strong painkillers took over and Scott became my nurse.

The drugs made me tired and Scott explained that was good. It made me stay in bed and rest.
I think that he enjoyed telling me what to with authority for once !

Obviously the main difficulty has been managing Amelia.
Scott ran the house perfectly.
Tom has been wonderful at entertaining and looking after himself.
BUT if Amelia needs anything she has to have physical assistance.
Toileting and showering and eating are tasks that I have been unable to help her with.

I did not realise how much I used my stomach muscles to move her from one situation to the next.

As the person who also does a lot of the household chores it has also been very frustrating not being able to help Scott.

So as I battle to get back to normal, I am reminding myself of a few things........
I am lucky.
Had I not decided to finally address my "monthly", the "grapefruit sized lump" would never have been found.
What I considered was the "cards I had been dealt" was not the case at all.
The back pain and the cramps were symptoms of the lump.
The heavy bleeding was probably from the lump too.
Finally something has shown me what smoking is doing to my body (even though I still want one constantly). I HAVE OFFICIALLY QUIT.
I may have a few stiches and scars but it could have been so much more.
And the best thing?
The test results on the lump showed it to be a benign tumour.
Even the doctor said he thought it may have pre-cancerous cells.
It had no sign of cancer in it.

I am very, very lucky.

xxx

Easter 2013

Easter time is a time for family.......for me.

It is the same as Christmas.

Most people know my thoughts on religion and I expect everyone to accept each other for their own beliefs.

I love Easter because there is no work, school or commitments.

We currently have a yucky cold and sore throat running through this house, so I am grateful for the time to recuperate, refresh and time to not stress.

It is wonderful.

Last year we went camping, the year before we spent in front of an open fire.......this year we are enjoying ourselves as a family at home.

On Tuesday I have to have a small operation at the hospital.

It is not major, but is a lump that needs to come out and get tested.
Recovery will be about 7 days.

So this weekend is extra special.

Time to just relax and enjoy each others company.
(and to also get over this virus!).

My recent concerns about "FRIENDS" was obviously unjustified.
Just my silly little mind....... and a reminder that I need to actually organise things for myself.

Thank you to everyone for calling and contacting me recently.
Thank you for the concern over the "lump".

Everything is going to be fine.
I can just feel it.

Have a most wonderful Easter everyone.
Enjoy your family and cherish what you have.
My sincerest love goes out to each one of you.

Now to go find some chocolate........

xxx

Dear Scott

A letter to my Husband,

To my dearest Scott,

Yesterday was the day we began our relationship 23 years ago.

(it is not the week earlier where we kissed at a party and then you did not follow through on your promise to call me in the following days. No. It is the day after I approached you at McDonalds and demanded to know what you were doing the following night because I would be inviting myself along!).

We were both 15 years old.

We had more differences than we did similarities but we became inseparable.
Every weekend we saw each other.
Every night we spoke on the phone.

In 3 days time it will be 14 years since we were married.

The stages we have travelled through and the events we have shared together are what makes our life unique.

Schooling, exams, driving, university, employment, moving out of home and even purchasing our first pet...... have all contributed to the life we have created.
The life we share.

The birth of our children was one we survived together.
Our differences were blurred now because we had grown together as one and the morals and values we wanted for our children were the same.

The future was to be happy and hopefully healthy.

Then a situation was thrown at us that tears many couples apart.

We were both told to "go home and enjoy every moment with your daughter".

The news that our daughter had a terminal illness only brought us closer together.
All differences were gone now.
We were now partners in giving all that we can to our precious children.

We support each other through the good and the bad.
We share the joy and the sorrow.
We try so very hard to create happiness when all we both want to do sometimes is curl up and cry.

Recently I have realised that I have taken you for granted.
You have always been there and I knew that you always would be.

You are part of me.
You will always be part of me.
You are the only one that will always be there with me.

I know that you often just "go with the flow".
I organise, plan and decide.
You do not argue or dispute.

Recently you told me that I was "the strongest woman that you know".
My reply is that it is sometimes the person that stands behind you that is stronger.
The person who supports and loves the one at the front.

Scott Nicholds, I am honoured to travel this journey with you.
To search for the positives and happiness.
To enjoy every moment with each other as well as our precious children.

You are such an amazing person and I thank you for coming into my life.

Love always and forever

Amanda
xxx