just needed to write

There are just some days that things seem a little hard yet there are many things to be thankful for....I know that and so does everybody else......still I am only human.

Today felt like one of those days. I spent a lonely night by myself last night, grand final night. I should have been with friends that I'd planned on being with but work during the day changed the agenda that I'd set. I came home exhausted and wanting a damn good holiday. I laid in bed till early hours of the morning and when I finally drifted off it was a restless few hours that I napped. As I dragged myself from slumber this morning, I began to potter outside as it was the beginnings of a beautiful spring day however motivation was somewhere not to be seen. It's a constant struggle to get on top of my world at home.

I am a sole parent of three children, 2 who have sensory disabilities. There are two boys and one girl. The eldest boy wears one hearing aide but deaf in both ears whereas the other boy is deaf in both ears and has a cochlea implant. The boys have a different father to that of my daughter so she is fine. The reason for my boys hearing loss is a defective gene that both their father and I carry called Connexin 26.

All I really want from life is not only the health of my children to be good but to fit into a family with my children, a home that I'm proud of and a man to love me and share it with me. Don't get me wrong, I have a wonderful man who I love more than life it's self just about but I know we won't be together while my children are around.....i can read the signs. It saddens me but I guess that's the way life is.

I really am fortunate that I am so much luckier than  many, many, many other's but I have had my struggles that either are unknown or forgotten about by the people who surround me. My boys father who was a chronic epileptic and had brain surgery to try to counteract it, also has schizophrenia and alcoholism. My daughter's father whilst not an alcoholic changed immensely while I was with him due to alcohol.....and my boys are not his so I was often reminded. I new that but they chose to call him 'Dad' of their own accord. They wanted a man in their life to guide them. Wasn't going to happen......

My boys do not drink or smoke. They let me know what they're doing and where they are  etc but I know they're not perfect and I feel I have failed in teaching them certain things in life. They are lazy to me. They don't respect me in that way. There are good and bad things in our relationship but I know who lets me know that I've failed and it's true. I am a sucker for doing too much for too many but I call it helping others, not always a good thing......apparently......

The last 12 months have brought lots of changes that have been hard to get accustomed too. I lost a very dear little boy who was a major part of my life as was his family. It's been almost 12 months from the day of his passing and the week that lead to that day I had to say goodbye. That last week were treasured moments that I spent with his family including his father who passed away very suddenly 3 months later. Whenever I visit them at their graveside, I still feel such an immense sadness. A little piece of me will always remain in the grave with the little boy that stole a piece of my heart when I first looked into his chocolate eyes. There is some comfort though in knowing that his father is now taking care of him but my heart brakes for who he left behind.

This year has also brought about a new job where others require my help. I miss my place in the world I journeyed with  the boy above. I believe I was there for the duration of the child's life and when he departed from this world so did my world I traveled with him. It was time to move away into new areas and other people who needed me. As strange as it is, I now work across the road from where my two friends quietly lay.

I have also learned that the father of my boys no longer cares to have a relationship with them. I came home to live from the main land when my eldest was three and to give birth to my next but on my own. As they have grown I have taken them back to the main land every 2-3 years. I felt it was important for them to have contact with their family so I did what I could for that to happen. This year was a year that we went over but this year I also learned along with my boys that their father is no longer fussed whether he sees them or not. His words ' I care but I don't care, it's up to them if they want something to do with me. If they do, they do and if they don't, they don't'. He made no effort with them while they were there and pretty much told the eldest the same thing. They have just wanted a male figure in their life to care!!!!!

As for my daughter, I have worked with her father to allow her the best relationship possible. I do not get any weekends with her only the afternoons when school has finished. I want her to be happy and as her father works out of town it's the best arrangement for them.

It has also been almost one year since meeting the beautiful man that I'm now with who incidently was thought of as a gift from the young boy no longer with me. I love my man with all my heart but I have come to the realization that we are years away from sharing a full life together. 12 months is not long, I realize that but at the age I am now I don't want years living on my own now. I guess that's how much he means to me......like no other.....he is a good loving man.
He is good with the kids but I know they are what holds us apart and the way my life is. My home is different to his.

a bizarre night

And a bizarre night it was.

A party with 100 or so invited to a dress up night to celebrate the aging of 50 years. What a legend! 3 attempts  later I had my face finished with no idea what it was going to turn out like. Along with my partner who loves an outing of a good time and my pet, to the party premises we went.

As we walked in, the aura I felt left me dumbfounded, lol, mmmmm..... Many of the attendees braved a costume or two and ideas were flowing with creativity. It was a colourful affair and typical of the Guest of Honour.

Pete ;)

Those first few steps walking into a place where, at first, we had fears of being the only ones dressed up except I knew Pete and Shana ;) and feeling  as though everyone stopped to see who walked in the door with with THOSE costumes!!

King Kong, Cyndi Lauper, Someone
&
Handsome

Cyndi & Someone

                             

The more I walked in, the more I didn't seem to know or maybe recognize familiar faces. Whilst there were many new faces, so many went to the effort of going with the theme of simply 'fancy dress'.  It felt bizarre!  It must have made Pete really enjoy his night. There were new friends, there were old friends, some in between, not to mention family. 

This was the first time Shana and Pete were going to meet my new partner and it was behind a mask lol. My man and I enjoyed dressing up crazy together, then going out on a bizarre evening with out pet King Kong. It brought a lot of laughs. Thanks for a great night guys, Shana and Pete......and Danny too xxx 

A quick flash upon arriving
home before saying
 'Goodnight'

I heard parenting was hard and it certainly is sometimes but what do you do when there appears to be nothing you can do? Whilst I believe my kids are quite lucky it doesn't stop me feeling a deep sadness for the frustrations that life serves them. I have no idea how to take away past pains and worries they face as a part of their every day living. Or how can I express myself when I'm the rock they rely on so much to get them through.

I feel forgotten in my own world of sorrow although I know that's not true. In all honesty, my kids are fairly good, I have a wonderful partner, a reasonably good job with others less fortunate than me, I even have some good friends so why do I feel my emotions are forgotten? Guess there are times that a person can only be human and can only take so much therefore emotions are strong however they will pass under the flipside of happiness. It's not that bad.......

A forgotten blog

This was a  old blog I had writen some time back...thought I might post it anyway.....


It was all I could do but to drag my body to bed even though I wanted to be so desperately there. It just seems to hard. In saying that I also remember I'm not the only one that feels that way. Time has passed since Noah went on a different journey and less time since his father Aaron went on the same journey.

With all the support that is given there are times that no matter how many share the pain of loss, there are times when you feel alone in your own grief. I often think of the closest people to  the ones who are now not here and their solo experiences in grief. It always leaves me at a loss as to what to say.....so I say little.....til now....maybe.....I'm thinking and writing as I go.

I haven't writen on my blog for a while. Time seems to be a problem. I was thrown off guard when I found out I actually had to go to work when I thought there was still another day off. Man! Got over it but tomorrow I will be returning to work at the school where I spent all my time with Noah for  the last 6-7 years. He is now no longer with me to work and play with. Instead there is a garden with gorgeous bright flowers and a seat to match : ).  I will be happy to take my traveller of coffee and sit on the seat and chat to whoever goes by. Think I'll do that on Wednesday when the kids are there too.

This year I will be taking on new challenges with a new student. I'm looking forward to what I can bring my student however I also feel like I might cry. That will be ok though, there is suport for me there. Noah will always be with me while I continue to work at the same school. Mind you, he had me questioning if I wanted to continue doing the same work. Whatever I was going to do, it wasn't with Noah, so not the same. I'm now going on realising 'of cors it's not the same' but somebody else needs me  to work and guide them along another journey.

I also suport another client frequently who is another individual person with needs. When looking into the eyes of those who need  suport from me, another individual story gets told.  Happiness, frustration, pain, cheekiness all go through the eyes of my clients.  I'll never forget looking into Noah's eyes, they were like chocolate......

It's a new year with new things and one can only move on so that life can be happy  with different adventures. Doesn't mean anyone forgets who is important in their lives.......like me lol. Just after Noah passed away, I met somebody who brought me happiness in a different way, didn't replace anybody, just a totaly new experience.  I'm thankful for his presence in my life as it made my grief for Noah more bareable.

My heart has also ache for the loss of Aaron and for Lisa and her family's loss more so. I put myself in their position many times over . It brakes my heart and I wish I could click my fingers and make it go away for everyone. As I wander to Noah and Aaron's place of rest, I look around at all the other people who were loved the same way by someone who has been or is going through the same grief.  I only know 100% how I feel but I can only imagine how they feel.

a gift from Noah.....

It's funny how things have a way of plopping themselves into one's life. I have a friend who has been there for quite sometime but unfortunately we had a disagreement and didn't contact each other for a while, however I often thought of her and wondered how she was going. I decided to make contact as we've had more good times as friends than bad times. I was so pleased I did as my friend was happy to catch up and it was like old times. I found out my friend had landed herself a new job and in that job was a lady who has become friends with her. A conversation that took place between them one day was the fact this lady had a son who obviously should have been with me and therefore he is....now.

 
He is quite the gentalman in a way that is unfamiliar to me and I feel a sense of security. For name sake I will refer to him as Mr D. The first person (I will name 'J') who I ever mentioned my chance meeting with Mr D to, asked me one day if I thought Noah had sent him to me. I was stunned and stared at this person unsure of what to say. As I thought about the question all I could  say was 'maybe'. J who is not overly religious put their hands together, looked at the sky and said 'thankyou Noah'. I will never forget that moment.......

 Since then I have found a happiness that I think I forgot exsisted. I thought I was content with my life, however, since Noah's passing there has been an empitiness that I couldn't shake totally. Whilst that gap is still there I am finding I'm more comforted by having Mr D in my life. I often think about the previous conversation that took place between me and  J and whether other people think it's silly or not, I also find comfort thinking that Noah may have sent me a special gift in the form of a gentalman.

bright eyed boy

Part two:

The following days after Noah passed away left me feeling numb. I wondered what was wrong, Why wasn't I grieving like I thought I should? I knew I felt a deep sadness but it was like a dream. I don't think reality had set in that Noah really wasn't physically here. I layed in my bed late one night unable to sleep and out of the blue I logged in to facebook on my phone and came across Noah's Uncle Chrish' blog. As I read and scrolled down I was hit with those big brown eyes that I remember so clearly. That was it!! My tears came....and came.....and came. I felt so much anguish. I wanted it to go away so bad. I didn't want to feel so much hurt. I know so many people felt the loss of Noah especially those closest to him but for that moment in bed that night I felt so alone in my own pain, my own grief. I wanted to run to a paddock and literally scream.  I just wanted  Noah to reach down and touch me. I did not feel or see anything but at that moment I felt more calm and my tears stopped. At some point I drifted off into a much needed rest.

It was hard walking back into work. I didn't want to talk about it or be questioned. I wasn't sure how the morning was going to be. It was the day the teachers were going to tell their classes about Noah. I was so concerned for the kids in mine and Noah's class not to mention his teacher who has a big, soft heart.  There was a meeting before school to talk to staff about letting the children know and it was requested I go. I entered the staff room later than everyone else so I slipped into a quiet corner and waited for the meeting to end. When it did,  the staff virtually lined up and gave me cuddles and words of encouragement. I was surprised even though I knew they would be thinking of me. I decided to pop in and see the kids in Noah's class. They are wonderful kids who were wonderful with him. Some of them had been in Noah's class since kinder so it was hard for them too. They needed to know I was doing ok as much as I needed to see how they were going. It was hard initially walking into the class but it was so worth it. They are such great kids. I love them heaps as I do the class teacher. Kate (teacher) has also been amazing. Her heart was also hurt with the loss of monkey man, as he was affectionately known by the family. She has stood by me and I cannot thank her enough for her love and support. I'm happy Noah and I were in Kate's class and we shared the loss of Noah together. I couldn't have thought of a better person. I now believe it was the best thing facing people on that day as it's often a hard moment to get through when it's a situation like this. I received lots of cuddles and words of care. I was amazed at the support I received although I always knew that I'd get support I was overwhelmed at the care I was shown and given.

Noah's funeral was magical. How amazing this family can be. It was colourful, funny, calm with lots of memories of Noah. Many people attended the service...it was like a plague of people. I hope Noah was looking down at all the people who were so fond of him and his family. As Noah was placed into the hurst, I could only stare at his glossy white coffin. I couldn't believe our boy was in there. 

We moved onto the grave site and what a superb place to lay him to rest. Lowering the coffin into a hole in the ground with a body of someone that's dear to you, makes me squirm. It was hard to believe we were leaving Noah down there but then it's not his spirit that we know, only a vehicle so we could see and touch the boy that was once inside. I wanted to leave a piece of Noah and I together, not that he would be overly happy, he was probably glad to see the back end of me truth be known, so I decided on my lanyard that hung round my neck everyday that he was at school. It gave me access to everywhere that I needed to go with him. It has hung round my neck for the last 5 year since being at the main school campas. Why my lanyard and not an adorable photo of me....because the words written on it said 'LEGEND'!

I dropped it down, it landed on the coffin about where his tummy was, bounced off and landed in the dirt down beside his coffin. thought 'on ya Noah', I'm sure he did that on purpose. Having said that, the balloons that were released in all their bright colours, took Noah for the last trip to the peaceful place where he is now. I cried. It was like he was going with the balloons and I wanted to pull them back but I couldn't. Noah wasn't coming back!

Noah's brother Jalen, the up coming film star, put together a slid show of Noah's life which was shown back at the church afterwards. The memories that are not forgotten but were tucked away in my mind, were right there on the screen. I wanted to go up to that screen and grab those cheeky chops. I'm sure my love and affection grew even more in remembrance. What a mixture of feelings that stirred in me as I watched. I was hurting, upset, aching, but also felt love, fondness and honour and it made me smile. I wasn't alone. 

I had the privilege of working with Noah ever year through his school life.  When Noah was well I worked hard on his vision, retraining his visual condition. It was amazing! I used sound and visual cues to grab his attention. He really seem to love a mirror but  being the typical male, loved looking at his own reflection.

He responded to sound well and bright colours caught his eye. Firstly it was my aim to get him to focus then get him to track a moving object. He did such a good job. I would often get him to touch and hold an item for extra stimulation. To help Noah focus I made and set up what I called

'the cave' . It was set up so I could lay Noah on the floor or position his chair inside a black area to block out all other distractions. It work very well plus he got to have a massage on the massage mat and a rub down from a fabulous aide. Again I used brightly coloured items and black and white mobiles or

 pictures as he lay there. He laid there for as long as I allowed and he appeared to quite enjoy scanning his 'cave'. He would move his eyes and at times move his head to glimps at other items placed around his special area. The school purchased a light box to aide his visual awareness. He was very responsive to it. It came with various patterns of transparent sheets that allowed light to shine through. I was always relunctant to drag him away from it. 

I believe one of the best outcomes from having him at Punchbowl P/S is is having the other children of the school gain knowledge and understanding of people with disabilities. Noah, along with his loving family, was an inspiration to many that knew him or about him. He was a person in a body that worked differently to mine. He experienced pain, happiness and showed his feeling by facial expressions, movements and his voice. I will be eternally honoured and  grateful to have worked with Noah and his family who have welcomed me into their home as a total stranger and given me the trust and resposibility of looking after their son who's whole life depended on the people around him to love and care for him as they do. It has been a journey that has changed my life. 

Noah now rests in a beautiful area that he well deserves. His spirit runs free while he smiles upon us. I will always love you Noah.  You have definately made me a better person.  See you when I get there :-)

   



My New Blog

So this is my new blog or I should say my first ever blog. I have no idea what I'm doing yet but let's see how I go.

I wondered what on earth I had to write about but then I realized I didn't have too much trouble yakking so there should be no problem trying to get things on to  software paper (lol yeah whatever!). Many thoughts have drifted in and out of my head as of late. Some have decided to stay longer than than others and some have not left and probably never will 100% anyway.


PART ONE:
One of the most significant events recently was the passing of a wonderful, bright eyed, 10 year old boy Noah. He was my client and my friend for almost 7 years now along with his family who I came to respect,  love and enjoy being part of their family. Whilst I had and still do have many emotions during Noah's final days and the events after I have not been able to express the deep inner thoughts and feelings during this difficult time. I am going to try to in my first ever blog.

I remember the first day I met Noah. His mum Lisa came to do the door with a baby on her hip. That baby was Noah's brother who is now 7. I still see Noah's face when I first laid eyes on him. He was so beautiful, cranky, but just beautiful. This was the first day of my near 7 year journey, learning, caring, laughing, nursing and being involved with Noah and his family.  I don't know where in that 7 years that I decided I would stay with Noah till 'death do us part'. I began with him the year before he started kindergarten and continued until his passing in grade 4. I worked with him at school and also supplied in-home-support. As I cared for Noah, I gained skills that many others in my position would never get and would never be comfortable with, however, I did trained other people in the specialised care needed for Noah.

The care need for Noah was round the clock, 24-7. He couldn't be left with just anyone. His whole life depended on the care of those around him. Many comments were made throughout my time with him about what 'quality' of life he had. What is quality? Love, care, food? Noah was loved endlessly and was given a wonderful life. He smiled, used his voice and played. Over the years  I saw a little person in Noah that shone through his eyes but as time went on changes were becoming present in him. I knew the day would come earlier than most for Noah to say goodbye.  Your aware of it coming everyday that goes by but how you prepare for the loss of someone so close to your own heart, I don't know. Noah was taken to hospital  3 hrs away for the last time. He was put onto an array of machines for various reason to help him. He was up and down but there were times in between that I began to realise how serious Noah's health was. I tired to spend as much time with him as possible but it never felt enough. I ached for him to wake and look at me but he continued to rest peacefully. I travelled back to Hobart a few days later and there were those big brown eyes. They were open and looking at me. It still makes me smile to think about that moment. That was the last time he was to open his eyes and the last our eyes would lock and look at each other but I didn't know it.  I returned home but received a call a day later from Lisa letting me know that Noah's conditioned worsened. Lisa and Aaron made the difficult decision to turn off the machines supporting Noah. I can only imagine what it must have been like to make a decision like that. Not only has my pain been for the loss of Noah it has also been for the grief and pain that the family has gone through. I was included by the family to be with them while they said 'goodbye' forever to Noah. I was not ready!!!! How could I ever be ready.......to say goodbye to someone that was my whole work and who I had come to love so much.

I sat in that hospital beside Noah on that very difficult day and just looked at him, his features, his breathing, his hands that I exercised so much. I couldn't believe I was there to say 'goodbye'. it wasn't fair!!! I  couldn't believe this was IT!!! It wasn't as though he was going on holiday and coming back or simply moving away to another state. It was a pain like I'd never felt and the end result was inevitable so there was nothing I could do. What does one say to his family?

Throughout the day, there were tears  but also smiles from sharing memories and jokes. Not once did any of the family forget me in this.....my feelings, my heartache, my loss. I believe I would not have gotten through it without the love and support from them. Not just Noah's immediate family but the HUGE family that comes with them. A large chunk of my world was about to change dramatically. I held Noah's hand for the last time, kissed him on his forehead for the last time, looked  and felt him for the last time before walking out of that damn ICU door for the last time. I left Lisa, Aaron, Jay, Haz, Kobe and Grandma to say their quiet farewells to their very much loved son. As I began my trip home, I waited patiently for Lisa to make contact that Noah had passed. It seemed like an eternity but it came and I'll never forget that moment. It was like part of me died with him.......how must it have been for them?