Difficulties and Emotions

Hello dear friends,

Many difficulties and emotions come from having a child with a disability and/or a serious illness.

Difficulties include
- house modifications
- equipment needed
- suitable transport
- major loss of income
- who can mind your child/ren and have the capability to look after them
- many appointments both close and far away
- finding activities and equipment suitable for entertainment due to limited access of hands and mind
- finding suitable respite that both you and your child are happy with
- running a house and able body child's life while disabled/sick child wants to speak to you constantly and needs assistance being included

Emotions include
- why her?
- Why me/us?
- I dread what is supposedly going to happen to her in the future
- how will we be? how will we cope? how will we continue living?
- I cannot handle being tired all of the time
- how do I fix the constant pain in my back, shoulder and hip?

- conflict and loss of friendship (with disability and serious illness comes pain and everyday emotions you would never experience otherwise. You learn to advocate, defend, become defiant and opinionated to keep moving forward. You learn to fight. You lose friends for many reasons. It hurts greatly and I struggle to recover with that loss).

- anger
- sadness
- gratitude

- numb

I am not the only one who feels this way and have these difficulties.

IF your child needs a piece of equipment......
IF you cannot pay a bill because you cannot work due to caring for child....
Life becomes a constant battle.

There is no set process for applying for equipment/modifications.
You have ONE government organisation to fund equipment and housing modifications.
They have a set amount and very strict rules.

Once you are on the list with your application it can take years to be approved.

In Amelia's case, she has had the same electric and manual wheelchair since 2011.
She has grown ALOT in 6 years and looks ridiculous in how small they are for her now.
She needs both because of her severe anxiety.
Amelia can mange her electric at school, but needs us to "push" her in crowded and unfamiliar environments.

If you do not qualify for this funding under their criteria, you have to go and virtually "beg" other organisations and charities for assistance.
It is humiliating and time consuming.

Some of us have pride.

Last nights blog was not about looking for pity, support or money.

We have been down the pathway of fundraising and it always ends up nasty as people change during the process.

I am only telling a story, which sometimes occurs through anger and "venting".

Recently I have become quite agrophobic and a hermit.
Occasionally I suffer panic attacks leaving the house alone.

Families that have a child with a disability constantly battle for their childs needs, while also battling everything else that life brings.
Many battle to keep a roof over their heads and food on the table because they have a child with a disability or illness.
Last night I was just trying to vent that.
It is not fair.

Yesterday, Amelia and I rang one of our favorite therapists to say goodbye.
She is leaving her current organisation.
She has been seeing Amelia since she was 4 years old.

I was quite thrown when she said.......
"Amanda, your blog has taught me so much. Because of your honesty, I look at my clients differently now and understand more of what they are going through".

Thank you for all of your messages and concern.
As always, we will be fine.
I honestly did not want or expect such a response.
There is so much I could speak about, but choose not to.
Only when it becomes too much..........
I just need to vent.

Positive reversal and thinking is the key.
Absorbing smiles and laughter is awesome.
Appreciating conversation and seconds together.

Hopefully NDIS will bring great relief as the "one stop shop" for everything disability, and a small part of our lives will become easier.

Spot Amelia in this very first commercial to advertise the new scheme.
https://www.youtube.com/watch?v=UeBFzmMDsxQ&feature=share