Two children - Two cures......... PART 1

Difficult to know what to say right now.
Difficult to process what is currently occurring and what was happened.
I have tried to write so many entries in the last few days but unfortunately due to circumstances out of my control, have been unable to.

Lets start at the very beginning........

Last weekend, my dad returned Tom from a sleepover.
He commented on the amount Tom was drinking and going to the toilet.
We discussed that we had noticed it here and that I would get it "looked at".

Three days later, on Christmas Eve, when presents needed to be wrapped, food needed to be prepared and a house needed cleaning, Scott took Tom to a doctors appointment.

Tom is our second child.
He is incredibly active, loves life, adores Amelia and can be argumentative and just plain annoying.
In the last few months he has been a real concern.
We had made a paediatrician appointment for him, had a very concerning talk with his school teacher and then a meeting that I demanded with his Vice Principal.
I was assured that this defiant behaviour was normal for a boy his age.
It was also understandable considering the role change at home between Scott and I.
But the treatment of his friends and us was a major concern to me.

While Scott and Tom went to this normal appointment, Amelia and I went to the supermarket to prepare for Christmas Day.
I did not hear the mobile phone in my bag due to the difficulty of a manual wheelchair and many bags of shopping.
When we returned home there were many messages from Scott.
"Have to go for emergency blood test".
"Please call me".
"Blood sugars are high".

Because Scott is a Type 2 diabetic, we both understand all the lingo.

All I could say was "shit".

When they finally returned home a bit fuss was made about how brave Tom was for the blood test.
When the nurse had requested him to sing Christmas Carols during the procedure, he had accidently said the word "boobies" and he thought that was hilarious.

Scott and I spoke privately and he explained that the sugars in Tom's urine was abnormally high.
The doctor would ring in 3 hours to tell us the result of the blood test.

We said goodbye to the children as they went to Nana's and Poppy's for dinner.
We were ready to wrap presents.

Two hours after the blood test, the phone rings.
"You need to get Tom to the hospital emergency department immediately. I do not mean to alarm you, but he may be about to go into a diabetic coma".

Shit.

"Dad? Scott has to come and get Tom. He needs to go to hospital".
"Why. He is fine."
"Apparently he isnt. Scott will be there in 10."

As Scott drove out of the driveway, I began crying.
Like REALLY crying.

I posted a FB status.....as you do.
Withing minutes, I had people calling me and arriving on my doorstep.
No general chit chat, just work.
Get presents wrapped and at the door.
Get bags packed to stay in hospital.

The instant support was surreal.

But I just stood there and sobbed.

I became sad and angry and organised for the following day.

"He needs to stay in till Saturday",
Scott's message said after they arrive at emergency.

"He is Type 1 Diabetic".

"Are you fucking serious ?" was all I could answer.

So began the "Why? After everything else, Why?".

To be continued..........

Pre - Christmas

Three days of non stop Christmas shopping.
I had not started.....not one present.
I suppose many of you are in the same boat as me....have to buy kids presents from grandparents etc.

So as well as S, us and grandparents, my body is in great PAIN !!!!
All the recent weight gain has meant my knees are hurting as well as my back.

Amelia left for her school today very excited.
It was the day of the school disco.
The dress and the hair had to be PERFECT.

It is very difficult to let a young girl become a woman while still keeping her pride and dignity.
When you have to get her dressed, wipe her on the toilet and shower her private parts.
When you have to take her to buy what she has seen/wants (because lets face it. There is not much available for her to "do") it is very taxing when it is weekly.
When you are having a conversation, and she has the same intellect as her peers, but she finds it so frustrating that people interrupt, you cannot understand her speech or she "forgets" what she is saying.....it can be heartbreaking.

But today we made it special.
We were excited with her.
Amelia is very assertive these days and has Scott and I running around doing errands for her!
Everyday.
So the flower garland for her hair was something I needed to go and purchase amongst the Christmas shopping.

Amelia is very difficult to buy presents for because she cannot use her hands.
You have to think of the other "senses".
Smell, sight, sound, taste and most importantly....laughter are paramount.
This year I have tried my best, but may focus on "outings" over the summer as well.

Having no money is hard.
Really, really hard.
But love and happiness will always win in the long run.

I got a job for 2014 this week.
It is only 25 hours a week, which will be near impossible to live on, but I have to accept what I have been given.
I will hopefully pick up other work relief teaching.
I am excited that someone "wants me".
I have been handed one 4 year old Kinder group to nurture, grow and develop to their full potential.
I am excited and oh so nervous.

Today I would like to finish with some funny conversations in this crazy house of ours.......

While showing Amelia suggested dresses for her school disco...
Amelia : Not that one. I will save it for New Years Eve.
(Please note : we have NO plans for NYE !).
Me : Oh really. What are you doing New Years Eve?
Amelia : I am having a party.
Me : Oh really. Where ?
Amelia : Here.
Me : Oh are you now? Who is coming?
Amelia then proceeded to name every single person we know.
( I then walked away having heart palpitations!).

Tom was showing me the autographs from his very loved Melbourne Football Club.
Tom: Every player put their number next to their signature.
Me: Oh ok. Why was that?
Tom : So I can understand who it is.
(Tom knows every player and their number).
As we get to the NEW coach......a very public media personality..... it says COACH under the signature.
I laughed and said "He wrote coach".
Tom : Yes I told him to.
Massive media personality and a 7 year old asked him to specify his role with the team.
Hilarious.

Tom's new teacher came up to him.
Teacher : Hi Tom. I am your teacher next year.
Tom : Oh good. Mum and dad said you might be. Actually they were HOPING you would be.
(Note: In good with teacher already!).

Scott : Amanda? I am getting a tattoo on Saturday.
Amanda : Silence.

Enjoy preparing for Christmas everyone.

xxx

Photos

Today was a productive and all emotion day.

At 7pm last night, Scott happened to come across a small comment on Facebook that talked about Tom's favorite football team, his idols, and how they would be training 20 minutes away at 9:30am this morning.
Oh the excitement!

We prepared him for disappointment.
They may not speak to him.
They may not sign his footy jumper.
They may not sign his autograph book.

I am absolutely thrilled to say they had photos with him, signed everything he asked and even high fived him after each drink stop.

You have absolutely no idea what this meant to someone who has articles, pictures and footy stats all over his bedroom.

I went and saw my beautiful friend Julia today with a delivery of meals from someone that does not know her.
It has been amazing to see how many people I know offer assistance with meals and groceries.
The world can be a beautiful place.

Amelia is still dragging me out to the shops every weekend.
This picture is us getting excited !!!

Yesterday she gave me many ideas for what to get her for Christmas Day.
When she really liked one handbag, I asked if she wanted to buy it with her own money.
Her Response?
"No. I will let Santa get that one".

We saw a little girl from Tom's school.
She came up and said "Hi Amelia".
After she walked away we heard her talking to her mum.
"Mum, I just saw Amelia".
"Amelia who?".
"You know mum. AMELIA".

Funny.

I started the Christmas shopping today
(yes, have only just begun!).
After buying a few items, I went to a trophy shop.
Amelia has been sad that everyone always gets trophies and because of her disability, she cannot see how she will ever get one.
Santa is now going to give her a big STAR trophy.
It will say.....
Amelia Grace Nicholds
A Kindness to Animals
Award.

Finally I arrived home to hear about both kids school day.
Amelia has a disco on Wednesday (mega excited!!!!).
And Tom has been told his teacher and classroom friends for 2014.
Extremely happy after Amelia also had this teacher.
Beautiful person inside and out.

But his report has blown us away.........
Some areas of learning are marked as 12 months ahead for his year level.

Do not know who he got that from !!!!

xxx

Harsh but true.

I have been battling my own, personal demons recently.
It will probably not come as a surprise to any of you, reading my posts on Facebook.

Adjusting and settling in to full time work is HARD.
It is especially hard when you have a family at home that needs you, and it is obvious, they need you there.

But this week something happened to remind me of the importance of day to day.
The importance of being alive and having loved ones close.

A beautiful friend of mine was diagnosed with bowel cancer.
Fine one day, diagnosis the next.
The result of a basic investigation is just a reminder how everything can change so quickly.
She has four stunning daughters.
The youngest has Downs Syndrome and is classified as "high needs".

As they wait to see the surgeon, as they wait to see how bad it is, as they wait to hear if it has spread..... must be horrendous.

When I publicly announced their situation, the community (world wide) support has been phenomenal. Groceries were ordered, Christmas lunch supplied and messages galore were circulating about paypal accounts, cleaners and babysitters.
Very comforting to know that people want to help and assist in some way.....any way.

The road ahead is going to be tough for this family, but the thought of so many standing by them is humbling.

Last week marked 3 years since Amelia was diagnosed.
Three years since our whole world stopped turning and we began the journey of our new "life".

Looking back to the life we once had is like reading a fairytale.
Now it is so very different to the life we used to lead.
The life we took for granted.

Now it is like we are looking at every situation under a microscope.
Everything is enhanced.
The small is so much bigger and the big can be overwhelming.
You cannot possibly describe this feeling to anyone.

It is common knowledge that we have lost many friends.
Some through conflict and others because it is just too hard for them to watch.
Some just drift away, never to be seen again.

I will never be able to explain what it feels like to be smothered with attention and assistance..........
and then it ALL stops.
All of it.
I actually have nightmares about it.
The kids ask where certain people have gone.
I cannot answer them.

Three years down the track could be considered a lonely existence.
But we try not to let it be.

We have happiness, we have sarcasm, we have love.
Scott, Amelia, Tom and I will always be here as a tight unit.
Others will come and go........including family.

Today another A-T mum began posting her fear.
As her child was admitted to a children's hospital in America........as the child (a similar age to Amelia) was moved to the oncology ward........... as she waits for what lies ahead......
We all cry with her.

A-T children are 1000 times more likely to get cancer than any other child.
It is disgustingly common.

Until you FEEL that fear.
Until you feel what it is like.......
You have no idea.

To know......
to feel the fear of death in the near future.
Until you cross to the other side..
You live that fairytale existence..
And I am so jealous of you.

Our financial difficulties are nothing in comparison.

xxx

The day of the PENIS

For the last few months Amelia has been very demanding for me to spend time with her on the weekends.
The impossibility of putting food in my mouth and have a two way conversation, of a weekday evening, has become obvious to her, but weekends are full on.
Every Saturday morning I wake to "Amelia's Agenda".
There is a small part in her brain where she stores ALL of the ideas she has for US to do over the 2 days.
I am ashamed to admit that I have had to stay home on two Mondays due to being burnt out!

This weekend, she was constantly mentioning the "sculpture park" up the road.
It is a wide open area with walking paths (Amelia calls it hiking) and looking at weird contraptions along the way. The distance is very far and conversations circle around "what was the artist thinking?!". They have a cafe if you have money and a lake full of hungry ducks.

After being asked the tenth time for today "when are we going?" I contacted the neighbour's across the road. Scott and Tom wanted to watch car racing on the TV, so I rang the people that live opposite on behalf of Amelia. After some describing of my role as Amelia's secretary and that their company was being requested, it was decided that they would join us.

Due to my excessive weight gain recently, I found it tough, but the company made it easier to discuss "what makes people think about, creating this stuff". It up and downhill and I swear the maze sculpture alone was about 2km long!

Towards the end we came to a sculpture of a man interacting with what I can only assume was his pet pig. The man looked like something out of "The Hobbit", but that is not the point of my story.
As we approached, it became obvious that the man had no clothes on.
"Oh look. You can see his penis" I said loud enough for the whole suburb to hear.
Amelia directed her slow tracking eyes over to this part I had bluntly described.
She squealed and then started laughing.
"Look it's he's penis" I said again (just in case people 1km away did not hear).
Amelia starts bouncing around in her chair, trying to release the laughter that has overcome her.
Our neighbour's children were also fully involved in the hysteria (I do not think the neighbour was very impressed at this stage).
"Lets see if we can see his bottom" I say wheeling Amelia's chair around to the back of the sculpture.
(Children and I are laughing hysterically at this point and running around to the back. Neighbour does not know which way to look).
Yep the bum is fully visible.
Amelia is unable to stop squealing and laughing and I suddenly have a light bulb moment..... PHOTO!
So I reverse Amelia's chair directly in front of penis.....sorry sculpture.
Four very formally, well to do people (obviously just attended the expensive cafe) walk towards sculpture and look at me positioning Amelia.
"Sorry" I say loudly.
"I am just taking a photo of her with the penis".
(Amelia is almost crying from laughter).
I decided to also let them know about how I felt about how the sculpter could have been more creative with the end product.
Very loudly I say.......
"I think there should be an interactive button on this one. Push it and he pees".

Neighbour finally talks and says "oh my god. I do not know you now".

People leave quickly.

Take photo.

After having some biscuits and feeding the ducks.....I see another.
ANOTHER PENIS!
Knowing neighbours concern of what I am introducing to her very young daughters, I say....
"Stay here. I have to go over there with Amelia".

Hysterical laughing at second naked man in middle of lake.

We go home and Amelia blurts out immediately to Scott and Tom....
"WE SAW A PENIS. TWO OF THEM !!!!".

Please feel free to share.....just in case anyone wants to see a penis or two.

 Penis 1

 Just in case you missed it.

 Amelia in front of a lake
Oh hang on........ there is a penis behind her.

This will probably mean the book is R rated now!

xxx

When you think the life you had has ended.

Sometimes I get the honour and the pleasure to speak to parents in the days after their child has been diagnosed with special needs.
Not just A-T.........anything that makes the child delightfully different.
Sometimes it is through this site, sometimes through facebook and sometimes via a friend.
Sometimes it is a friend that receives this devastating news.

There is only one message that I ever want to convey to them.....

Everything will be ok.

xxx

Processing our new Life

Hello Long Distance Friends.

Amelia is doing reasonably well at the moment.
There are more "down" days than usual and complaints of "boredom" but overall she is still sailing through life.
We will be inquiring about medication for the sad days sometime in the near future.

It is hard though.....really hard.
A consequence of seeing and hearing about what others have been doing, is she wishes to be able to do many things.
Children in her year level at her old school have just participated in school camp.
While discussing this at dinner the other night, she wanted to know when she gets to go on a camp.
Amelia only ever gets to stay at my parents and a couple of times at a friends from the special school.
Last week it was mass excitement to be invited to sleep across the road at "Georgia's".
Big week with my birthday, trick or treating and a sleepover with a good friend.

Amelia's hands no longer work the way she would like them to.
The ability to eat, drink and use the ipad is almost diminished.
The need for us to assist her constantly has increased to almost 99% of all activities.

I am concerned about the way her back leans.
Amelia's back is no longer straight......... it is......... slumped.
That is the only way I can describe it.
Slumped and to the left.

Amelia's eating is getting closer to the need to be "peg fed".
This means you have to feed a person through a small tube in the stomach.
The reason for this is nutrition.
Amelia will eat donuts, hot chips, potato chips and dry biscuits till the cows come home......but there is not a lot of nutritional value in what she eats anymore.
Tinned tuna and small amounts at dinner time is it.
The facial expressions and defiance not to open her mouth are frustrating.
At least she has the extra weight to rely on for now.

Strangely, Amelia's fatigue levels are better than they have ever been.
She is surviving the long hours of a day and still has her humor in tact.
Amelia has always refused an afternoon sleep, so it is easier to see her coping till bedtime.

Tom is being very difficult at the moment.
He is someone I will discuss another time.

Me.......
I am struggling.
I am working full time, trying to apply for permanent full time work, fit in interviews and now 2 ultrasounds for possible gallstones.
I refuse to meet up with friends because I have NEVER had so little time with my children.
Scott is still being magnificent but I am still struggling to comprehend what I have given up.........and I am exhausted.

It is HIS turn.
HE has done this for the 10 years (since bubbies arrived) and now I need to share the valuable time.

It is understandable that family do not like seeing either of us stressed and not well from financial strain.
My parents are experiencing it for the first time.
They do not like seeing me experiencing possible stress symptoms..........but Scott's haven't for the last 10 years, so it is my turn.

But it is hard.

Maybe at this point, I need a really good cry and remember to appreciate that one of us is home with the children.
A parent that is still offering them memorable and important quality time.
Some mornings it is so hard to get up and get ready for work.

I need permanent full time.
A place to settle, grow and inspire at.
Not agency work.

I have just returned from "Christmas Idea Shopping" with Amelia.
It was fun.
It lifted my spirits.
Her smile lifts my spirits anytime.
I have returned with so many ideas for her and Tom.
I LOVE her obsessions with make up. perfume, glitter and One Direction.
I love her obsessions with BFF's, singing to the radio and favorite music.

Yesterday was special though.
As I lay "sulking" on the couch, Amelia worked her way through a Disneyland app on her ipad.
For hours she reminded me of the fun.... at this part...... and that ride.
I was amazed at her memory of Disneyland (when she struggles to remember how to count to 20) and found myself staring at her wondering what was occuring.
Then she came to one particular ride.
It was one in California Adventure Park, about 200 metres away from Disneyland.
On this one particular day, Mum, Dad, Scott, Stuart and Tom decided to enter this "realistic" theatre.
Water splashes at you, spiders come down from the ceiling and pieces of your seat move.
The discussion was had that Amelia would be "freaked out".
They all went and I took Amelia to investigate other parts of the park.

Amelia and I came to a ride.
It could be considered one for younger children.
It was about healthy food and fruit salad.
We climbed aboard a caterpillar.
This caterpillar took us on a sensory journey through taste, smell and sight,
Yesterday....... 2 years after this adventure, (when I had long forgotten this 10 minutes in time), Amelia verbally reminded of every step of the ride.
Every smell and every sensation.

"I want to go back " she said.
"Yes. Me too" I answered.

Oh........ to win Tattslotto.....and live life simply...........
Like anyone and everyone.

xxx

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