Saturday, 4 January 2014

My Resolve

Sleep is not on the "can do" list for me at the moment.
All the searching for positive thoughts and processing all the negative ones means that it is difficult to shut the mind down.
I apologise to those that cannot handle my entries over the last week and also to the many newbies that probably wonder what terrible blog they have stumbled across.
I know that there many "worse off" than us.

I am normally not like this.
But unfortunately I feel like I have changed forever.

I do not feel it is just because of Tom being diagnosed with Type 1 such.

I feel that I am permanently broken.

My whole inner strength and soul is now in shattered broken pieces.

Let me explain why I maybe feel this way.........

1. Way back in the beginning I wanted a good life full of health, happiness and friends.
- As I approach 40 years of age, I struggle to look too far into the future now. Much of the above has been taken away.

2. I wanted to have children who were happy, resilient, independent and kind.
- I have definately got that.

3. When Amelia was diagnosed with Cerebral Palsy, my resolve at the time was "at least it will not get worse".
- Four years later we were told she has Ataxia Telangiectasia and the definition of the whole disease is she will get worse. It is also the worst possible outcome we could ever imagine - shortened lifespan.

4. A charity group is established for us which is amazing and overwhelming. We went to Disneyland, clinics in Brisbane, got a new car and even had it converted.
- But then that group ended badly and I lost people who I thought were lifetime friends through it.

5. My car was hit by a bus.....literally.

6. We had to say goodbye to Honey after she was aggressive too many times.
- that broke our hearts.

7. I step WAY out of my comfort zone to find employment so my husband can enjoy special time being a house husband, considering Amelia's illness, only to discover a "friend" was prohibiting me from getting permanent employment. I could not understand how subtle assurance in the interview suddenly turned to a firm "unsuccessful".

8. My resolve that while we need to focus so much time on Amelia, Tom was confident, independent and HEALTHY.
- Tom now needs around the clock care.

All expectations, dreams, hope and happiness is always shattered.

The feeling overall is always:  hurt, pain and watching my children suffer.
Even the bus driving towards our car, which was sideways, was heading for the children's side of the car.

Even though the tears still roll at the moment, it is the pain inside that hurts the most.
The feeling of how "unfair, karma and you get what you deserve" is slowly fading.

I can feel a transformation from within.

My resolve for the future is to be a good mum, wife, teacher and breadwinner.......... but the part of me that lived in a musical is broken.

It is easier to be prepared for the next onslaught than be happy and carefree.

It hurts too much.


Wednesday, 1 January 2014

Moving through the motions.......again.

Hello everyone, Miss Depression here.
Well it feels like that anyway.

We are home from hospital and have fallen in an emotional heap.

Amelia is definately in "recovery mode" after what has occured in the last week.
She is exceptionally tired.

Scott and I are not people you would really want to be around at the moment.
Lots of "why us", "the house is like a hospital ", "our 2 children need around the clock care" and "our life is shit".
I know many of you have said "you will get used to it" and "it will become the new normal".
My argument is ......
We did not need a new normal.
We already had enough on our plate.
Weren't we already dealing with enough?

I am sure you all want to come and visit after reading that now!

The only person happy is Tom.
He is enthusiastically waking up and treating each day as he always has.
Talking non stop, arguing his point and eating constantly.
The needles are already becoming second nature to him, as is the finger pricks 5 days a day and night.
Tom is taking everything in his stride and is full of explanations for anyone that asks him about his new routine. He will even happily show you the needle process if you want to see it, with full commentary!

Thank you for all the many messages.
The shock that so many of you felt on Christmas Eve makes us feel that this negative stage we are traveling through is justified.

Just wonder if I will ever experience a happy, carefree and positive life now.
(will attempt to be happier next post).


Tuesday, 31 December 2013

Two Children - Two Cures Part 4

(Please read Part 1, 2 and 3 before proceeding)

At a recent "parent-teacher" interview for Amelia, her teacher laughed when she said "When Amelia started at this school" it was like having "rent a crowd" start too.
I think the hospital staff thought the same on Christmas Day.
So many of our friends and family members came to see Tom.
These people took time during their own Christmas Day to come and see us.

The feeling of "Why?" was a common question among everyone.
But the contribution to make Amelia and Tom's Christmas as good as it possibly could be was overwhelming.
The morning, afternoon and evening was a constant stream of visitors.
Dad and I laughed when we were given a plate of Christmas lunch from the staff cafe.
"Merry Christmas" we both said laughing.
We sat there eating cold meats, roast potatoes and salad laughing at the absurdity of this meal.

Christmas Day also meant that I had to face a major fear of mine.
I have always been frightened of needles.
I instantly become nauseous and feel like either fainting or vomiting.
The nurses were telling me that I had to learn how to draw the insulin and then inject it into my son every morning and every night.

The first needle that I was in control of consisted of me sitting on a chair with Tom on the bed in front of me.
Slowly I ended up laying from the waist up across the bed, still drawing the insulin.
When I eventually pushed the needle through the skin on Tom's thigh, he breathed a sigh of relief.
"Mum. Good job. It didn't hurt" he said excitedly.

Done. I can do this.

Christmas night, Scott joined Amelia at his sisters house.
Jane had kindly offered to have Amelia for the day and make her Christmas special.
Tom and I had visitors for "Christmas Dinner".
Tom happily played with another child and was reminded that he is still a kid.

That night he got upset again that he was separated from his Amelia.
We rang her and Scott to say goodnight.
When Amelia got upset we asked her what was wrong.
"Tom has had a horrible Christmas in hospital" she said.
Tom smiled.
"Amelia I have had an AWESOME Christmas. You get heaps more presents in hospital" he said laughing.

Boxing Day brought with it more visitors and a visit to the park.

The staff were becoming more strict with the fact that Tom and I need to take control of testing his blood sugars, learning what he can and cannot eat and administering the needles ourselves.

The TV in our room did not work, there was no WiFi in the whole hospital and Tom was starting to get fed up and angry.
He cried for his sister, dad and dog "Scampy".

Learning about diabetes also meant practicing on others.
My dad and I had Tom practice "finger pricking" on us.
It was quite sadistic the look on Tom's face as he came towards me with the pin.
I couldn't stop laughing at the thrill he was getting from doing it!

We had the whole Children's ward to ourselves after 10am Christmas Day and untill lunchtime Boxing Day.
Then all the "Christmas Day accidents" began arriving.
A severe dog bite on a 5 year olds face, a broken arm from a scooter fall and a 2 year old that had jumped off the bench and pushed her front teeth up into her head.

When I left the hospital to go and have a smoke, I had the "usual's" often there.
The man who had returned from overseas to spend Christmas with his family, only to spend it in hospital with dengue fever. The man who had experienced stomach pain and then had to have an operation on Christmas Day to remove 6 hernias.

Amelia could not stay for long when she visited.
As soon as she entered she would go pale and start complaining.
Poor Scott was trying to handle the house, pets, Amelia and still get in to see Tom and I.

The sooner we got to go home the better.
They kept saying "Saturday morning".
Christmas Eve was Tuesday.

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

Monday, 30 December 2013

Two Children - Two Cures Part 3

(Please read Part 1 and 2 before proceeding)

As Tom finished the 3am finger prick to record his blood sugar levels, he placed his head back on the pillow.
He sat back up and looked at the full Santa sack at the end of his hospital bed.
He looked at me in the darkness and back at the sack.
"OMG. I think Santa has come to visit you at the hospital" I said.
His excitement was contagious.
This was a marvelous opportunity to do something so incredibly positive despite the current situation.
Tom jumped out of bed.
"Can I have a look?" he asked excitedly.
"Of course" I said.

Tom unpacked the Santa bag all over the hospital bed.
"I will open 3. I will open 3 now and I will wait for Amelia to come and open the rest" he said.
He carefully held each individual present and decided which one was the most important to open.

One item was an AFL football.
Perfect for Tom.

Next to his bed was a present that I did not know about.
I asked the nurse about it.
"Every year we have a lady ring at 3pm on Christmas Eve. She asks what children look like they will be staying in hospital overnight. She then goes to the shops and buys them presents. At midnight she leaves a pile of presents at the front door of the children's ward. They are specific to the age and gender of the child".

I crumbled.
How incredibly kind.

At 3am on this Christmas Eve / morning, Tom opened a present to find a watch and his very first "children's novel".
He was so excited and happy.
Because this was a present I did not know about, and one that was so amazingly kind and sincere, I cried.

Tom climbed into my tiny parent bed and we cuddled until morning.

We were woken by a very happy and fun nurse on Christmas Day.
She was genuinely great.
She presented Tom with a gift from the "Woolworths Frankston Wishing Tree".
It was a WaHu football to use in water.
"I want to play" Tom yelled.
So after what would become the daily morning insulin needle, he played.
Clare took our son out into the hospital ward hallway and began eagerly playing football with him.
Tom was squealing and laughing, while Clare kept yelling "It's Christmas, Stuff it".

To watch this event is indescrible.

It is Christmas morning.
I am in a hospital with my "healthy" child.
I cannot see my other child waking up.
My husband is all alone with our pets as companions.

I am witnessing the most miraculous event with one of my family members....
The only one that is with me.

The tears were happy.
The two other families watched laughing.

Tom was so happy.
That was all I cared about.
Nana and Poppy, please make sure Amelia's Christmas is as special as this.

As a light on the ceiling was hit by the football the staff laughed.
There were three staff member playing by this stage.
They were all having to work, we were stuck in there.....
we were all in the same boat.
(later discussion revealed their young children who they had to leave to come to "work").

Their efforts did not go unnoticed.
Witnessing Tom having so much fun was very helpful to my current state of mind.

I am proud of Amelia and Tom.
They waited until 10am to open Santa's presents.
They "chose" to open their presents one at a time.
This was their choice.
They wanted to open them together.

It was the most amazing experience (on no sleep!).
The sharing, co-operation and sibling connection was something to remember FOREVER.

Tom can be such a difficult child......
But with Amelia he is AMAZING.

Afterwards, as I quietly moved away, to go home and shower....
as I prepared for many night sleeping over...
Amelia began her complaining.

"I am hungry".
"I am bored".

She was not coping with being back in Hospital (even as a visitor).
She could not be here.

(To be continued)................

Two children - two cures Part 2

(Please read Part 1 before continuing)

As a beautiful friend and I left for the hospital, I thought we had everything.
There was a bag of clothes for Tom and everything ready for Santa the following morning.
We new that I would be staying at the hospital.
That is just what I do.

First we visited Amelia at Nana and Poppy's.
Before entering the house, I calmed myself down.
Amelia needed to see me calm to be reassured that everything was going to be ok.
We quietly left presents for the morning downstairs.
Upstairs we portrayed fake excitement that Santa would be visiting Amelia at Nana and Poppy's.
The explanation that a note had been left for Santa seemed to suffice any worry.
We discussed opening presents at the hospital in the morning.
Forgot to pack Amelia anything change of clothes.

As we entered the hospital, we left a bag of presents at the nursing station.
As I entered Tom's room, a doctor was just finishing a conversation with Scott.
The memories of my role with Amelia when she was in hospital started coming back and were all consuming.
To anyone in that room, I would have appeared as an arrogant, demanding parent.
"Can you please tell me everything you just told Scott?".
If I was going to be here, I wanted to know and understand EVERYTHING.
I learnt that while I was in with Amelia 3 years ago.

The need to stay positive and happy for Tom was difficult.
It was Christmas Eve and my family was now separated.

Tom was very sad that evening that he did not have Amelia and Scott there.
He was worried that Santa would not know where he was.
He was also petrified that he was on the naughty list, not because he was in hospital, but because he had been in a lot of trouble recently.
Nana and poppy were also doing all that they could to cheer Amelia up.

At 10pm, I suddenly realised what the time was.
As we went to bed, Tom and I had a little cry but also shared the excitement that Santa would soon be coming.
Tom fell asleep very quickly but I was wide awake until 2am.

The anger was starting to build from within me.
The anger that this had happened to us.
The question of  "am I really that bad a person to have all of this happen to my family".
To know that two children have gone to sleep crying after counting down every sleep till when Santa comes.
Now we were all separated.

I could feel myself losing all happiness and positive thoughts.
The anger that someone or something was trying to take away anything that was good in my life.

The child that was healthy was now not.
The only member of this family without a diagnosis..... now had one.

Some so called "God" giving me only what I could handle?

I knew Christmas Eve that I was not going to "handle" this very well and it was going to take all of my being to get through this.

 Christmas Eve

Santa has arrived.