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

https://www.facebook.com/photo.php?fbid=10202299329755236&set=gm.633542750029421&type=1&theater

Building memories

 Amelia with one of her BFF's

 An attempt at a "family selfie"!!!!


Hello from the deep dark hole that is full time work !!!!!!

I am trying to convince Scott to start writing on here........at least occasionally.
His insight to being at home and the full time carer will be beneficial to many, including himself.

Writing and revealing can be very powerful to yourself as much as for others.

My life has consisted of working 9-5:30 in a Kinder room 45 minutes away for the last 3 weeks.
I have loved being involved with a room full of children and assisting with their education, daily needs and overall development.
It has made me become up to date with all the changes that were made in the last few years in Early Childhood very quickly.
I have little boys that have just turned 3 and are still at that cute, chubby stage and girls who fit into a 3 year old program perfectly. I also have the overly confident boys and girls who, at this time of year, were ready for school yesterday.
I have applied for 3 jobs so far.
To get ANY of them would be a bonus.
They all offer different things to me and our family.
My DREAM job application was to Melbourne Zoo. It is for the position of Education Officer to all the children that attend on excursions. The focus would be on conservation and how humans are destroying animal habitat......something very close to my heart.
The hours and travel would mean this job is perfect for ME and possibly destroy all that we have created in our home environment.
The other 2 are perfect for our family and still me and my passion for teaching young children.
One is 30 minutes away, the other is 10 minutes.

My life is learning about how weekends are sacred now and when I get home from work having cuddles and talking about everyones day.

Over the last few weeks, I have enjoyed watching Scott, Amelia and Tom adapt to the major change in our household.
Scott is learning how "there is not enough hours in a day" to get everything done.
Something that really stands out to me is the way Scott has devoted so much time to each child before and after school.
I was always about organisation, cleaning and tidying ........ and spending time with the kids.
Scott puts spending time with the kids for large amounts of time first.
Something I struggled with.

I am loving watching him still get the household chores done, but he involves the kids.
It requires pocket money to each child and they are loving helping.
Amelia helps fold washing and hands pegs to Scott out at the clothesline. She also empties the letterbox when she gets off the bus in the afternoon.
Tom feeds the animals at night, unpacks the dishwasher with Scott (suggests how he can pack it better!) and cleans up after dinner.
The little conversations, where I need an explanation, are awesome to watch between the three of them.

Amelia's moods are still all over the place and are something we may need to address in the near future but she is still loving her school and home time.
She is very excited about Halloween this Thursday and has her costume out ready.
She also has some amazing friends around her.

Last night we even had a glimpse of the sense of humour we have all missed so much.
Singing is her passion these days, whether she is making up funny words to tunes or just laughing hysterically at her own singing, it is great to see such happiness radiating off her.

So maybe you will get to read Scott's perspective on it all one day.
Till then keep smiling and look after yourselves.

xxx

A Lesson In Friendship

Hello.

Many, many years ago, I was a social butterfly.
Phone calls, text messages, sharing emails and last minute BBQ's were constant.
It was not unusual to jump into the cars with kids and arrive at someones house for a play and a cuppa.
Walking around the block chatting, going to the movies and meeting at a cafe was standard everyday life.

I set up my own playgroup when Amelia was a baby and also had a "social group" at Amelia's Kinder that regularly went out to dinner during the year.

Friends were the same as family.
Permanent.

Over the last few years that has changed.
I think it is partly because I have changed.

My happy, positive exterior struggles to maintain itself.
I prefer to be at home.
It is easier.

There is only one person that can have Amelia overnight now if Scott and I have a function.
To even put her to bed is a struggle for anyone.
It would mean that you have to take her to the toilet, which is embarassing for the caregiver, but more importantly Amelia.
You also have to be strong to support her.

If we take Amelia out with us she is then forced to watch all of the other children having fun.
There is no use trying to help her join in because she will continue to see what she would love to be able to do.
Then the whinging and complaining about "being bored" starts and we end up going home.
Being bored quite translates to "I hate watching this".

There have been many situations in the last 2 years that I am not proud of.
Birthdays, fundraisers and BBQ's we were meant to attend that we just never got to.
Sometimes it is because of exhaustion, Amelia is sick or the fact it is just easier to stay at home.

Lazy, it would seem.
But it is not from our end.

I sometimes wonder whether Amelia's Project has actually brought with it a rather large negative side.
The expectation and pressure from "supporting us" has a massive repercussion for the future.
It is different if  "we" do not come compared to someone else.

We will always appreciate what has been done for us......we have had the most amazing experiences and memories to last a lifetime.

But the situation is still what it is.
It is hard and our social life comes second now.

Nobody could possibly understand unless they lived in our home and cared for our children 24/7.

I also wonder if "our situation" has also caused others to change.
Today I was reminded of the "familiar builds contempt".
People read this blog and my facebook status and think "for goodness sake. Just get over it already. Move on".
They are sick of hearing about it.
That concerns me.

Friendship is a two way street.
Everybody knows that.
But sometimes we need to accept people for who they are and decide whether we want to continue the friendship, even if they are not the ones that make 50% of the contact.
The time that is spent with that person.....is it worth it?
I have a very close friend that I would not be friends with if I had not been persistant for the last 20 years.
I adore her and know she does not call anybody.
I accept that is not a personal attack but just the way she is.
But when we do finally catch up it is awesome!

There are other friends who I have learnt to hold very dear over the years.
You do not see or speak to them often but know they will always be there.

There are the friends who have become distant.
Either they no longer relate to Scott and I, cannot handle seeing Amelia or want to remove the "negative" from their lives.

There are also the friends that we are meeting that we would never have met if Amelia did not have Ataxia Telangiectasia.
Other families who have children with a disability.
Other people who also question what happened to their social life.

Today I received a "jolt" about the type of friend I am now.
A message that spoke of my "lack of effort you made regarding the things I have invited you to".

It hurt. Really hurt.
Rather than get angry though, I saw the way that others are now seeing me.
The opposite of what I was.

My effort to do much at all diminished 2 years, 10 months and 3 days ago.

I have to reassess the person I have become while mothering a child with a terminal illness and decide whether I want to change that persona or just keep those that accept I am still me, just different.

xxx

Where has the amazing life gone? Oh yeah A-T has taken it away.

(The following blog is depressing. But I am ok. Just sorting through feelings xxx)

Mountains are not moving at the moment.

I am trying in our quest for an amazing life but they are holding firm.

I do not know what pathway my writing is going to take tonight but I am hoping that it will give me some clarity and focus.

Amelia is not happy.

She is bored, grumpy, angry and sad.

She is cuddly, affectionate and wants one to one attention constantly.

It is hard.

Really hard.

One minute she is happy and then she is not.

We try to involve and introduce activities but they only end up, once again, showing her what she can no longer do.

Everything is getting harder.

To dress her, to move her and even the ability to fall asleep.

She has really taken to Scott being the house husband, so I know it is not because of that.

She is 10 now.

Time is passing by too quick.

We also have a 7 year old son that is a handful and also wonderful.

His feelings, thoughts and grief need to be handled daily too.

Neither child knows the real diagnosis of A-T and I wonder how long that can be the case.

Recently I returned from a day at work.

I ventured into the backyard to say hi to Tom.

He was running all over the backyard by himself playing a footy game.

"What are you doing?" I asked.

"Playing a charity game" he answered.

"What for?" I asked.

"All the players and fans had to give money to make Amelia's A-T go away" he said happily.

My heart just broke.

A 7 year old is not meant to be thinking and worrying about stuff like that.

Amelia does not want us to talk or mention her A-T.

She only wants to talk about "happy" things.

After telling Scott the other night that she "hates her life", I thought I would try a new approach.

I spoke to her about only getting one life and no matter what your circumstances you need to make it the best it can be.

"What makes you happy?" I asked.

"When I see butterflies, smiley faces and love hearts, it makes me smile" she said.

I guess my printer is going to use a lot of ink now!

I thought I may also set up a "pen pal" type program for her and other A-T kids of a similar age around the world.

It may be fun to get pictures, photo's and information from other places.

Talk to someone who is also wheelchair bound.

Then the usual happens.

I will need to do it all for her.

It is so frustrating for her.

Intellectually she is not affected.

Only struggling and failing at things she used to be able to do.

We had to say goodbye to someone from our lives recently.

They did not die, but we discovered just how frightened and sad Amelia was when around them.

When they did not stop the teasing and sarcasm, after we asked them to, we had to make the move away.

Other people no longer match what we need to be surrounded by.

Some people just do not realise that we cannot associate with people who bring negativity, secrets and nastiness into our lives anymore.

The two gala nights held for us is what we need.

Not the money.............. but the love, the friends, the fun and 250 people in a room wanting to create a better life for a little girl.

I can honestly say that I have bottled my feelings from those two evenings.

When I am feeling alone in our battle I take a deep breath and pretend to breathe in those feelings and take myself back to those two nights.

It makes me feel stronger.

I understand that Amelia is approaching puberty but I do not think any of us can handle the moodiness mixed with her frustration and sadness about her disease.

I have cleaned all week, I have researched teaching ideas.......

anything to distract my mind.

Amelia needs rest and downtime after a busy term 3.

But she does not know what to do.

Today I read, on Facebook, about a 5 year old boy being buried by his mother.

The harsh reality for so many parents.

Yesterday someone said to me "you will be fine. God is good".

In my world, in my REAL world, there is no god.

If there is, he is not a nice person.

xxx