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.


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