I am angry, sad and tired.
I am all of these things at once everyday at the moment.
I am trying so hard to find the positives in situations but I struggle to even smile right now.
Laughter is non existent.
I feel selfish and I know many of you struggle with exactly what I am struggling with right now.
We have just returned from the most amazing holiday (blog almost finished about that) that many of you will never have the chance to enjoy. I feel selfish that my worries and complaints are nothing compared to so many of you reading this. But I think the holiday may have exasperated my thoughts. I liked the person I was on holidays. I liked spending so much quality time with the family in an environment where everything was exciting. The weather was warm, the people friendly, the food awesome and the days fun. We were all so happy and relaxed.
It is sad being back home.
Scott has even mentioned moving to a warmer climate so we are more motivated and able to spend time outdoors.
I am pissed off that this is not the life I envisaged for myself and my family when I was younger.
Scott and I were on pathway of promotions, house, cars and holidays.
We were not meant to watch one of our children disintergrate and all of us struggle to stay afloat around her.
I also understand that no one could really understand "our life", just as I would not try to comprehend anyone elses. If you do not live it, you can neither understand or judge it.
Obviously there are issues I need to deal with that have arisen recently.
But this is how I feel right now and I will not apologise for it.
My mind is in overdrive and I cannot sleep properly.
If I take my sleeping pills or self medicate with wine I apparently snore like a trooper and keep the whole house awake.
The house looks and smells like a rubbish dump and I have absolutely no motivation to do anything about it.
Just keeping up with the washing, dishes and food on the table is difficult enough.
Our carpet is covered in stains that arise from having pets inside, something that will always be the case. Animals as family members can be a saviour on many levels. We want to rip all the carpet up and replace it with floorboards. Easy to clean. But that requires money that we do not have. Our floors are disgusting.
I am trying with all my might to get through this BUT find the tiredness always wins.
It is not depression (been there, done that) but an overwhelming feeling that I have had enough. There is also the feeling that I will come out the other end positive. I have succeeded many times before so my past success rate is promising!
We have a daughter that constantly says "I want to be a normal girl" at the moment.
She consistently watches other people do everyday activities that she would LOVE to join in with.
She will look at us with tears in her eyes and plead with us to stop the A-T that is ravaging her body.
Her feet have started hurting whenever she has shoes on.
Her back is starting to curl when she is sitting.
She needs help rolling over in bed.
At 10 years old she cannot walk, crawl, shower or toilet alone.
To type on a computer is near impossible now and the concentration to work an ipad unbearable to watch.
Food and drink is always knocked over and the coughing from swallowing more frequent each day.
Her legs are no longer bearing the weight of her body when we move her and frequently collapse underneath her. Our backs and hips try to take the brunt of the fall.
It shouldn't be this way.
Our life should not be like this.
When Tom has a meltdown over nothing and argues with us like he is a lawyer (for and against is always communicated to us) and when he talks about "Milly could walk then. Milly could stand then. Why do I always have to move for Milly?".
When Amelia was being defiant with Scott recently and he had to speak firmly to her, Tom yelled at him "She cannot help it. She has got A-T. Leave her alone".
He has never seen her disciplined until recently. He needs to learn that she can still be difficult when it has nothing to do with her A-T. He has only ever seen himself being disciplined and everyone protecting and defending his sister.
He needs to learn that we cannot do many things that other families do because of Amelia's condition.
It is almost impossible for us all to go for a walk around the block.
All credit to him though that he has discovered a way to play with his sibling that both enjoy : Tom is the comedian and Amelia laughs hysterically.
It is not fair on both children that we are in this situation at all.
It is not all about Amelia.
ALL of us are affected.
Scott is no longer working, partly because of Amelia's A-T.
We decided that the unhealthy environment at his work place, full of derogatory comments, blame and bitchy high school behaviour, was not what he deserved to be a part of 5 days a week.
We have enough to deal with at home.
He does not need to continue being around people like that.
After 3 years he took control of his "amazing life".
I am proud of him for doing that.
Not many people will understand due to the old fashioned view of the "male being the breadwinner".
But not many are in our situation.
My equal opportunity attitude has taken over and I realise the importance of Scott spending quality time with the kids.
I have had my time at home, it is his turn now.
He deserves it.
Many of you are commenting that you neither recognise or can believe the change in Scott in the last 2 months.
He is happy and fun and wacky now.
But we need an income.
Unfortunately endota have decided to change their plans for "workplace childcare".
So I need to use the degree I got many years ago and get out there and work.
Scott is capable of managing the house and kids.
I am not good with change of routine.....or any change for that matter.
I do not want to work. Contradictory to what I speak of above, I know.
I have not worked for 5 years!
Thankfully my motivation has just started to return to get in a room full of children after my first relief job call yesterday.
But I had established a wonderful system of running the house, managing teachers/therapy specialists, cooking and having mental health days.
I am moving from days alone to days full of interaction and noise.
But I loved teaching before our life changed.
I love kids and the innocence they represent.
I have trouble with it.
I am grateful that my previous work colleagues have embraced my re entry and are enthusiastically welcoming me back. That is showing signs of being contagious.
But I was never meant to go back.
Change is difficult for me.
And finally ...... money.
If we did not have this massive mortgage to pay then the stress overwhelming us right now would mean that we could focus on a positive life.
We could focus on the kids and ourselves.
We could enjoy our time with them and establish the memories and lives we so eagerly wish for.
But as well as looking at Amelia's future and Tom staying as emotionally stable as possible, we need to earn a substantial amount of money just to live.
Selfish and unrealistic, I know.
So many of you are used to my honesty and anxieties that your comments of "you will be fine" are started to sink in.
Everyone of you is in that situation, I know.
If only money grew on trees.
Please take this blog as you wish.
Remember I am honest, not depressed or suicidal.
I just tell the world how I feel.
Look forward to the happy blog of our holiday soon.
P.S Oh and one of our fish died (just wanted to add to the negativity!).
P.P.S Feeling better already after getting this off my mind :)