so frustrated right now

If I hear one more person say that Dan has no disabilities and his behaviour is all because he is naughty and there are no underlying issues I will end up in jail!!!! I didn't do the 2 sensory profiles, I didn't do his physio assessment, I didn't do his IQ assessment. I didn't do his speech and language assessment that was done in one of his hospital stays when I was not present so I could not bribe the speechy either........I also don't force Dan to show he lacks the understanding of emotions, humour, tact, true reciprocated friendships and love....... I didn't force the paed to say he had ADHD or 2 different psychs to say he has Aspergers or the psychologists that diagnosed his reactive attachment disorder. I was the one who heard the child development networks Developmental Paed say he was beyond helping Dan and he was more psych, but he was so INTERESTING in his complex behaviours he would like to stay involved..........I didn't bribe child safety in to saying our home was perfect for Dan, with parents who love and care deeply for him and being thanked for not throwing him into the Child safety system. I took him to the appointments but with a lot more than just one specialist how the hell can you deduct that he is just a naughty kid who has no consequences and is spoilt......

sinking......

That feeling, when you just can't bare to talk to anyone or see anyone is here once more....I am trying to fight through it but I have been sick, my band is really tight and I am tired. Dan is still unwell too.....I just want everyone to know I am ok....that I am seeing my counsellor tomorrow and FX I will be back.....

Let me tell you about my hero

My poppa.

I had an extremely difficult childhood. (see my story in the links to the right) 

My poppa is the only person in this whole wide world who has let me just be me. Who loved me unconditionally from the start, who made me feel laughter and joy, safe and calm, who would give me horsey rides and let me sneak a swig of his beer. 

I remember how he would rub his stubble on my cheeks and snicker cheekily in my ear.....All of us grand kids couldn't wait for him to get home of an afternoon.

He was a builder. In the Days it was a craft to build a house with just your hands. He lived out west and was away alot of the time and always worked in the sun.

When I was 14 Poppa was first diagnosed with Cancer.....He had skin cancers removed from his face and neck and needed radiation....This happened over many years causing extreme pain...the radiation would cause is oesophagus to burn. It was hell...He had many skin grafts as well.

Just before I fell pregnant he told the family he was done. He could not go through any more operations or radiations. We all understood. 

Nan and pop were parental figures to my brother and I, my aunt had passed when I was 9 months old so I became something for them to hold on too....I know I hold a special place in their hearts. 

when Dan was born I was a single mum and I asked my nan and pop if I could give Dan their last name. Pop and my Great uncle had all had girls and the Garnish name was to stop. Poppa was so proud.

when Dan was 3 months old poppas cancer came back.....Straight away he said do what you need to do.....I have something I really need to live for.

Pop and Dan were 2 peas in a pod. Dan looks so much like him in the way he locks his knees when he stands to the colour of his eyes.

We went back to see pop when Dan was 4 months old to be there for pops operation. He took Dan walking on his own (no one had ever seen poppa push a pram) he fed Danny bottles and the connection was so close.

In 2008 Pop was having bowel troubles but at the same time a nasty skin cancer came up. He went to Sydney to have that removed before a colonoscopy that 6 weeks later changed our lives.

He had Bowel cancer. I took time off work and we went home for his surgery......On our way down, mum rang and said they successfully removed the bowel cancer...for an instant I was relieved until she said it had already spread to his liver.......in August 2008.

I went back to visit them with my kids for chrissy in 2008

Pop was fighting it the best way he could and even started doing experimental therapy to help........Around the 25th of May 2009 Mum received the call to head home. It took us 24 hours opposed to 7 because of the floods. We arrived on Tuesday the 26th of May. Poppa was in bed and only able to just get up.....

I spent time lying with him, chatting with him, laughing with him......

On the Wednesday the 27th of May palliative care arrived to talk to my nan, mum and Aunts.....they asked me to stay with pop. those 2 hours are irreplaceable. I told him I would look after his babies, nanny and mum. I told him I would keep losing weight. I told him how proud I was to be his Grand Daughter and I told him how much I love and appreciate him...the whole time holding his frail, wrinkled, beautiful hand.....the last thing he said to me lucidly was when I said I love you my poppa....and he said I love you to darlin...those words were the last he said to anyone before he started hallucinating and fell into a deep sleep. I was given the honour and privilege of caring for him for the next 24 hours. I worked in Disability, mental health, aged and palliative care all my life......I felt so honoured......We rang my dad and told him to bring my brother, Darryl, Dan and Tahli as quick as possible......at 8.20pm on the 28th of May my brother Arrived......I said run upstairs, nan let him lay beside poppa. He said Poppa I love you, gave him a kiss....Said that Dan, Tahli, Darryl and Dad were safe in the house. HE came back down stairs, my pop took three deep breaths and passed peacefully away knowing his babies were safe in the house.....

At 9.14pm on the 28th of May I lost my rock, my hero, my safe place, my soft place, my love, my hero.....

I am so so so blessed to have known such an amazing man, without him. I would not be here now.....

we don't say goodbye 
we say see you soon. 
You are both resting, peacefully watching over your family. 
love transends time. I can almost feel your touch gently on my shoulders. 
I miss you more than I ever thought was possible. 
You both took a piece of my heart when you left and now how do I fill that empty void. 
I hear you saying god love ya. I want to feel your arms around me so much it hurts. 
Standing on pedastals since the day I was born. I adore you both. 
Life is not the same without you in it. The sun isnt shinning as fierce, the breath of the air doesnt feel 
as comforting as it once did. 
You both taught me so much. I will honour those teachings in the way I bring up your great grand babies. Neither one of you were ready to leave but both of you needed to be together. 
As a single tear falls down my face, I need the world to stand still while I catch my breath and know the reality you are both gone, never forgotten, always much adored, forever in my heart. 

Dan saw his new Ot today!!! OMG she is amazing.....The grin on his little face, his relaxed body and mind let his spirit soar through so so much!! Just to see a glimpse of the little soul that is buried deep within all that pain was amazing!!!!
He can't wait to go back next friday.......HE loves the swinging hammock the most!!!!!

sighs

ya know I really am at a breaking point...something goes right all for it just to be all jumbled again......Coming from a control freak!!! I don't cope well not knowing what is going to happen and not having control of things.
Darryl got the permanent position at work on Tuesday and we were on a HIGH!!! and then DSQ said they would pay for dans OT and I am like OMG!! we are moving forward.....and now someone has stuffed up either DSQ or the OT and Dan may only get one visit and there is no bloody point to one visit....
I am trying to breath through it. We have a new premier from monday so I will lobby him about it!!  actually I sent him a cheeky email today. I know he won't see it but hell can't hurt for him to get to know me now...he will know me well in the coming months!!!!!

Susie

2 years ago after many frantic phone calls we end up at child youth mental health with an intake officer......Little did I know this woman was to become a huge part of my families world. She realised how dire our situation was and fast tracked our first meeting with the Dr.....She held Dan's legs I held his arms so He couldn't run away. He was almost 7 and had tried twice over the Christmas holidays to commit suicide.....go to god as he explains it.....We started on Ritalin and Risperadone and we saw Susie weekly. She became our case manager. I remember sobbing in the room while Dan was going wild and she said to me Suck it up girl, never let him see he has power over you.......Such a real honest person.
Over three years she not only took care of Dans interests and advocated for him at school, with QLD health and with DSQ, but she supported me. She was honest and fair and someone I could bounce ideas off. In June last year she decided to leave CYMHS. I freaked!!! But she told me she was becoming a mental health care nurse and gave me the doctors name so I could get a referral to see her.......It took me 4 months to work up the courage to go BUT omg am I glad I did. She is my safe person...that little room....as clinical as it is, is my safe place, where I never have to pretend, I never have to lie, I can cry and laugh, bounce Ideas off her and always gain insight and wonderful advice. I truly have found an earth angel in my susie!!!!
today for an hour and a half I got to pour out my heart and head......to get everything out that I don't dare tell anyone, to laugh with her, to feel her warmth and understanding........I really don't think she understands the impact she has had on mine and my families life.
I said that I must have a burning ember of strength deep inside somewhere......She said I think you get that from your poppa.....how right was she in that statement....
Thank you Susie for everything you do xoxoxox

Happy anniversary

Today is Darryl and my 6th wedding anniversary!!
I am so blessed to have him in my world....what a roller coaster ride we have been on...but there is no one else I would rather share the ride with....
love you more baby!! xoxoxo

what weekend!!!!

To start of with MAH DRAGONS FLOGGED THE TIGERS WAHOOOOOO on Friday night....I may of had a couple of drinks

Dan woke at 3.45am and had a pretty good day, no violence but alot of swearing....that I can cope with sighs.....He had a friend stay over on Sat night as he had been really good and he was still awake at 2am.....to much change I think sighs....He woke at 11am.....

Got to watch the Formula 1....weekend was awesome for a sport thirsty girl...

I am exhausted this morning though!!!

Tahlis ultra sound

Tahli had her ultra sound today......She was so so good. She stayed completely still and did everything that the man asked her too....kidneys are close to the same size so that is a good thing...but that was only my observation......She got to see her heart and hear her heart beating...It bought me back to when my babies were inside me.....a Heart beat is the most beautiful sound a parent can ever hear.....

Dan has had a pretty good Day although he was awake at 4.00am this morning. Going to try give him his medication later this afternoon.....FX he goes to sleep a lil later and sleeps in a bit in the morning....

So thankful it is Friday.......this week has been one of the hardest I have ever endured!!

A little peace please

Yesterday I ended up taking Dan to the police station. He had broken our sliding door window and I had exhausted all my support systems and was worried about his and my safety. I think it is one of the hardest things I have ever done in my entire life. I kept saying in my head...I am doing this because I love him over and over......I think I under estimate these demons that are his disabilities.....as much as they are apart of him but they do not define who they are, but I feel like I spend so much time dealing with his disabilities that I lose the opportunities to spend time with my little man....It makes me so so so sad. I see how vulnerable he is with those big blue eyes.....I know that every behaviour there is a reason, an underlying issue and it makes me sick that most of the time I have no idea what he is feeling, what he is thinking or what is circling around in his little head. I second guess myself constantly.....How do I know I am doing the right thing? Most of it comes from the heart.....but sometimes it comes from an angry place of self pity, where I feel we all got drawn a raw deal. I want it different I want it to change I want it to go away.......Sometimes just for a split second I forget he has any disabilities and I can look into his deep blue eyes and melt at the thought he is mine......I explain my life as living in a domestic violence situation that I will not leave. I will never ever give up on my little man. I will move heaven and earth to make this world easier for him to understand, to make people aware of child mental illness and disability.....of the inadequacy of support for people with mental health and disabilities. I love my little boy so so so much...............I just feel like a total failure that when I look at him, most of the time there is vacancy, mis understanding, anger, frustration and fear in his little face.

Total turmoil

Last night Dan went to sleep ok on his own....but at 4.30am he was awake, hyperactive, jumping on my bed (I have a sore tummy) screaming and yelling calling us names and that went on til 6am.....I went back into bed and just lied there screaming in my head why.................Why give my little man these disabilities, what did we do wrong to have such chaos and sadness and anger in our lives.....Haven't we been punished enough.....I then go through all the bad things...It is my fault he is this way, I didn't protect him properly. I didn't yell out during my pregnancy or labour......I didn't shield him from harm. I broke my little boy and now I am being punished by never feeling love from him.....Not that I ever expected it as such.....I just naturally thought that you give love, you receive love, but it is always on his terms and always a way of getting back at me for something. Dan has multiple disabilities that butt heads badly.......some disabilities are co-morbid and run Parallel with ADHD...e.g Autism, ODD....but Dan has Trauma induced Reactive attachment disorder which, from a parents point of view is so much harder than anything else.......He is settled atm.....but I grieve for what I thought our life would be......I grieve that every day my son is so angry, sad, frustrated and chaotic and can't explain his problems.....I grieve that my family will never have the life I had hoped for......I will do anything to make it better....but at the end of the day he will be with me for life......I also worry if I die, who will care for him..............

A sick house

Danny won't keep his shoes on and he has an infection in his toe from a large cut...the infection has headed up his body in the form of boils so he is home sick. I was up with Tahls and Dan during the night and I don't feel great myself today. In fact I would like to go back to bed and not feel any pain...emotionally or physically just once!!!!
Darryl has his job interview on Thursday I am kinda anxious and I hope he gets it. He has been working in the position temporarily for the last 3 years......and he has been at the CMC for 21 years now so if they give it to someone else I will be bloody livid. He deserves it!!!!!

wow an update is truly needed

Well lets make this short and sweet.....I spent so much time hiding over the last 10 months or so that I wouldn't have to look at myself....deep into myself.

Dan has gone backwards and has also had some major break throughs!!! we are still fighting QLD education for him to have the access to learn as he deserves. A battle I will fight til the death!!! He is at main stream school and he is struggling but he is doing the very best he can...........

Tahli has had her little struggles she is doing so well at school. We finally have seen a urologist last week and we are under his care trying to find the cause of her issues.......

Darryl is going for a promotion at work. As always he is my rock and I am so so blessed to have him.

As for me......Well I have rocked between 176-184kg over the last 12 months. I just had Lola tightened and FX I will be on my way!!
My agoraphobia and PTSD has been a real struggle for me to break free. I am now seeing a new counsellor and I adore her so so so much!!! She has been in our lives for the last 3 years......
My compensation claim is coming to a head.....First conference with Lawyers is on the 24th of July. Financially we are struggling I just cannot wait to break free from what has been a horrific three years.
I also suffered my third miscarriage in Sept. '11 It has been such a struggle since I lost little poppy seed......We have decided to TTC again slowly though....

I have been blessed to meet some beautiful ladies on my TTC path and through the loss of my little angels.....I am sure as this new chapter in my life begins I will talk constantly about these awe inspiring women!!!