Still Pro-active

My brain is in overdrive.
There is so much happening.
Lucky I just had a weekend of sleeping, sitting on a couch and filling my mouth with food and drink!

Yes people. You heard that right.

My husband threw me out on Friday afternoon.
Told me to go to my parents empty flat in the city and not come home until Sunday.

I LOVE LOVE LOVED IT !!!!

Just what the doctor ordered.

As I was leaving Tom became very clingy (normally it is Amelia).
The kids have become very used to the WHOLE family being at home day and night.
Despite my mother guilt, I was able to say "I need to go so that I can be a better mum next week".

Both children accepted this comment and enjoyed a fabulous weekend with their dad.

I, on the other hand, read and became obsessed with a new TV show on DVD.....
Friday Night Lights.

Scott had both kids on his own while I lived the life of laziness.

Sunday night, Scott's best friend from Primary School (and his wife), requested both of our children for a sleepover.
I returned from the flat to help back their bags, drop them off and then go out for tea with my husband.

Something like this appears so small........ but it is actually HUGE !

No responding to Amelia's calls of assistance and what Tom should eat.
No helping Amelia to eat or drink and when Tom needs his next needle.

Just PURE adult time and adult talk.
(Not dirty for those with dirty minds).

The novel of information that Scott read out before we left was bordering on hilarious.
What both children "need" and how to look after them IS a novel.
It was wonderful to see Scott take charge and make sure everything is understood for both kids.

Danny and Donna are such amazing friends.
With two young children of their own, they also took on ours.
I will never be able to explain the effect it had on Scott and I as parents, a married couple AND as individual people.

On Monday, Scott had a meeting with centre link (government assistance in Australia).
A special person chose to help us work through the maze of what is available to us.
She works there, so that helps.

Scott walked in to that office with a folder FULL of forms filled out (with the assistance of this friend).
It is applications for things that we had never heard about.
This angel spent time on her holidays, HERE, doing work.
We will be FOREVER grateful.

He came back out of centre link in shock.

We have had no income since I stopped working on December 6th.

From what they told him, over 2 hours, we will actually have enough money to pay the bills now.
We will not lose the house.

Scott and I do not have the financial stress that has been causing so many arguments.

So different than how we planned our life.

No one will ever understand how this house is like a hospital ward.
Needles, toileting, eating, entertainment/activities and emotional stability.

But as I said to Scott Sunday night......
"We are good people. We have been handed these two children for a reason".

Amazing life, no matter what.
Amazing life.
We can do this.

xxx

The ladder

Big Day.

Today began with swimming at Nana and Poppy's.
Amelia decided that she wanted to get out of the pool (very hard when she is 60 odd kg) walk around to the side of the pool and JUMP in.
This is huge......not only on my back!
She is facing her fears.
A task that was so very simple 2 years ago is now something that scares her.
Due to her physical skills, once she initially sinks, it is panic stations when she cannot resurface again.
After much encouragement and plans about "how to handle this".....
SHE DID IT !!!!!

6 times later and I took refuge in the Volteren anti- inflammatory at home !!

After 2 hours of swimming, her legs no longer worked outside of the pool.
But Amelia was happy.
That is what is important.

We had to return for a meeting with one of our "guru" specialists.
Amelia's Private OT.
Someone that has helped us in so many ways.
She reads this blog, when she wants to know how we are traveling, and offers assistance when the time is right.

Today's meeting centred around respite care (within the home and out).
We discussed our "comfortability" with strangers caring for Amelia and they explained how "friends" and people we know could assist.
They also discussed funding options

We talked about disability art classes (Amelia's passion).
Other organisations were mentioned for camps and activity programs.
There was a discussion about sibling support and assistance (Tom).
There was also talk about the fact that we have no income (use our Superannuation).

In there somewhere we talked about a new bed and dining table chair for Amelia, so she does not fall off the chair at meal times.

Centrelink and Physio "guru's" are occuring in the next week.

I am climbing that ladder to be positive again.

One life people.
One life.
Wallow in self pity and then take the bull by the horns.

xxx

xxx

Was just looking at the photo at the beginning of this blog.
Wow....she is absolutely stunning.
Love her to bits.

Amelia was very difficult when Tom was in Hospital, but it wasn't because of her own fears.
Her behaviour in Hospital, after we returned home and through our discussions......
it is something so much more.
Something quite wonderful about her actually.

She has "Empathy".

Amelia taps into other peoples feelings, emotions and situations.
The most obvious moment has been in the last few weeks.

On Christmas Eve, Amelia did not care that she was at Nana and Poppy's.
She only cared that Tom was in hospital.
She only cared that Santa visit him there (no consideration for herself).
Needles, pin pricks and blood tests made her FEEL for Tom.
She had to leave the hospital.

When she heard that he had given himself his first needle in hospital she asked Scott to send in a photo from her new "mood calender".
It was a photo of her holding a picture of a face.
Underneath is said "HERO".

He was beside himself happy.
Tom immediately left the room to tell all of the hospital staff.
It was a real indication of his love and admiration for Amelia.
SHE was proud of HIM.
Everything that he witnesses her struggle with daily, and SHE was proud of HIM !!!!

I am regularly told of people that feel a "pull" to Amelia.
People that have a spiritual connection that can see those that have passed standing around her.
Guarding her.

These are always strangers approaching me.

Remember the man at our local shopping centre that placed a hand on her head and began humming a chant?

This week I became "proactive".
I have organised a meeting with one of our medical "guru's".
I want to know what disability and government assistance is available to us.
Scott and I need help in so many areas.
Financial is definately one.

The children have expressed an interest in participating in activities outside of the home.

When Amelia was first diagnosed, the only assistance that was constantly offered was "respite".
The thought of Amelia staying in an unfamiliar house with people she did not know has always been a big no-no for me.
We are now beginning to hear about funding available to choose our own carer and choose where and how she could have fun with someone else.
Recently Amelia returned from school and angrily demanded to know "why Jackson was going on a camp to Phillip Island" with a disability organisation.
I explained to her my reasons for not enrolling her and pointed out her difficulty in leaving Scott and I at the best of times.
Lets just say that I enrolled Amelia in that program this week.
It also offers a holiday program with days spent at wildlife parks and art classes.
She was accepted immediately because of her disease.
She is very excited about future adventures and I am realising that we have to begin outsourcing entertainment for her.

We have also discovered that Tom has camps available to him through Diabetes Australia.
(Imagine a whole group of kids having to do finger pricks and needles!).
He has now been enrolled in a 3 day camp in June/July.
Scott or I will be attending because it is his first one.

Tom is also attending his first Diabetes clinic on Thursday.
Amelia's clinic is 3 hours away by plane, Tom's is 10 minutes up the road!

As I was already on a roll, I rang our case worker at Very Special Kids.
I have booked the whole family into a cottage, in the country, on a farm for the near future.
It is a long weekend and all accomodation costs are paid for by VSK.
While we were at it, we also booked into another cottage they own, in the country (opposite direction!).
That one is not until the end of the year but is for a whole week!

Working out the maze of benefits available to us has become easier due to a friend working in the industry.
Should I be excited that we will have 2 children on carers payment ?
No. I did not think so either.

Finally thank you for your comments and concern regarding my comments in my last blog about Scott and I.

It is only because we love each other so much that we have to acknowledge the toll that all the stress and heartache has done to our relationship.
We love each other enough to contemplate becoming happier people for not only ourselves but also the children.

xxx

The Turning

After my lost post, I have received many messages to stop apologising.

I find this very difficult NOT to do.
I come one here and whinge and talk about my inner most thoughts.

People meet me for the first time and say that they are actually genuinely surprised that I am reasonably "normal", if that is possible for anyone in this day and age.

During the last few weeks it has been hard to hear of other peoples wonderful Summer/Christmas Holidays.
Seeing photos of amazing places and family memories being built does not help this depression that has taken over me.

I would say that I have consumed enough alcohol recently that I could probably have opened a bottle shop!
Cigarettes? Well.... my lungs ache.

Distructive behaviour it is called.
Definately a coping mechanism.

My whole world has been turned upside down.
I was coping to the best (or end) of my ability with Amelia and when I began working again.
This seems to have tipped me over the edge.

But in the last 2 days I can feel the ROAR happening again.

It is a roar that I have felt many times in the last few years.
A roar to battle and overcome this force that is determined to win at all costs.

I am better than it.

As Tom challenged me to a game of cricket today, it was represented in a different light.
I savored and relished in it's feeling of battle.

I can battle outside forces (like Tom winning at a cricket game!).

The last few weeks have been some of the lowest I have ever experienced.
Without being TOO honest, Scott and I have discussed separating.

There is only so much you can do.
Only so much you can cope with.
To separate would give time out and a chance at another inkling of life.

But we love each other.
We were together before the kids came along.
We are childhood sweethearts that battle together.

I am preparing to win this newest battle.
I am preparing my armour and weapons.

Bring it on Universe.

xxx

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 Diabetes....as 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.

xxx

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).

xxx

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..........