Wednesday, 15 January 2014

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.



Tuesday, 14 January 2014

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.