Trials of life and the person next to you…

by Mum Talks Autism on May 8, 2014

IMG_4276I have had a great deal of time on my hands of late. It is frustrating to have so much time on my hands and yet be so unwell to do anything with that time but rest.

On a more positive note, I have direction as to where I am going. There is light at the end of the tunnel although the tunnel is still very long and painful I can see that light at the end. For the first time in a long time I am finally feeling that light is not a fully laden locomotive coming to run over my arse.

I am booked in to have some surgery to actually cut the nerves to my kidneys. As crazy as it sounds I can not wait till it happens. Till the pain is literally cut away. With no nerve there can be no pain. I can not imagine what it would be like to not live with renal pain but it is a feeling I can not wait to feel.

Over the last few months so many people have said to me, ‘you poor thing’, ‘you are so strong’, etc etc. Usually I would respond with ‘there is always someone doing it harder than me’. For awhile there it was all about me me me me me and I didn’t care what other people were going through because I was going through enough myself. I hoped that would not last long because that is so unusual for my nature.

I was slapped into reality with a four by two.

Whilst waiting to have tests a few days ago I sat next to a young mum not much younger than me. She was holding tightly to a small teddy bear that patiently sat on her lap looking out as if it was searching for its ‘special’ someone.

We got talking and she told me that they find out today if her eight year old boy is in remission. He has leukemia and had been fighting it since he was three. She looked liked she had not slept in that entire time and I realised that she probably hasn’t.

She asked me why I was there. I told her I had twisted my wrist and just had to have an xray. I didn’t need to tell her I was there finding out if I was also going to have a future, if I was going to live. This was all about her and what she was going through and what was happening to me was not important. She needed to just talk about her journey and her boy and what they were going to do when he was well. She did not need to carry my burden on all she was carrying already.

The doctor called her name and she shook my hand and wished me luck. Then she was gone. Just that quick – she was gone. I think I will wonder for a long time what happened to that nice lady and lost little teddy bear. I will think of them and wonder if her little man is doing ok and if their news was good news that day.

As I looked around the waiting room filled with some obviously very ill and some not so obviously ill people that day I wondered about the stories behind their faces, behind their eyes, behind the smiles that so desperately wanted to shine.

I realised just like me , that there are others that are doing it rough. Some not so rough and others that would do anything to be walking in my shoes.

Life is just what you get and you have to do with it what you can and in my case at the moment what I have to do to survive. To make it into tomorrow and the day after that and the day after that. To be here and be the mum I was born to be to these amazing people I call my sons.

A day at a time, a step at a time. That is all we are all doing really – just getting there through life a step at a time.

I am just so thankful I still have the ability to take them steps – no matter how damn hard they are at times.

Don’t Stop Believeing,

Much Love,

coralie sig

 

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Not so “READY’ as I thought.

by Mum Talks Autism on April 23, 2014

I can not believe that it was already months ago that I sat and wrote about how I was ‘back and ready to go’. Who was I kidding????

Myself more than anyone I think.

I love writing my blog and I love hearing from you all. More than anything I love walking through this journey that is our life with you all and knowing that I am making some sort of contribution to something, to someone, regardless of how little that difference may be.

What I have found these last few months is that I had to take the time out to make a difference in my life. In the life of the amazing young men I have been blessed to call my sons.

This is where my priority has had to be.

This is where it has been and will have to be for sometime yet.

Last month I found out that I have renal failure.

I always have had bad kidneys since I was a child and  they were damaged even further when I was sick in 2010 and by the pregnancies that brought my darling boys to me. I did not realise that it would lead to this and the uncertainty of what will be my life in the future.

I see the renal team on the 1st May and we go from there. Surgery? Dialysis? Transplant? Everything is so unknown at the moment.

I am praying they will have some answers for me so I know what is around the corner. What my tomorrow’s hold and when this debilitating pain that has engulfed my restless slumber and my every waking hour will finally stop.

Everything is up in the air at the moment but I have come to know quite a few things these past months as I have pondered my tomorrows and what they may hold;

True friends are treasures that I have come to appreciate more than ever.

Children are a blessing and every moment with them should be savoured because being too sick to share them moments is heartbreaking.

Love is what really does keep a family together. A team getting through the hardest of hardest days, TOGETHER.

Life is precious…… So So very precious.

 

Don’t Stop Believing,

coralie sig

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Back, Excited and ready to GO.

by Mum Talks Autism on January 7, 2014

 

ImageI don’t even know where to begin to try and explain where I have been these last few months. To say that life has been overwhelming is to say the very least. There comes a time when one has to stop and listen to their own heart and mind and admit that they are not okay….

This was indeed where I found myself. Not okay.

So I had to stop for a moment and step back and look after me. Look after me and my family, as we slowly tried to put ourselves back together after what has been a turbulent time for us all.

The death of my darling sister in law impacted me greatly and I was saddened by her death more than I can explain with mere words. But I will try in the coming months – to share our journey, our loss and how we are all so much better people for having known her. I need to share this story more for my sake than anyone else’s if the truth is being told. It is a story that needs to be told and a beautiful human being that needs to always be remembered, as I know she will.

My darling boy B7 had a serious break to his right arm. He actually broke it in two places and required three operations which ended in a terrible infection, not unlike the infection that killed my darling son Robert ten years ago. I found ourselves in the same hospital that Robert was also in. To say that was a difficult and challenging time would be true. Brought back some horrific memories that I had managed to settle deep away for a time. Depression reared its ugly debilitating head yet again as the trauma of my beloved son’s death engulfed my life and my dreams yet again.

Then T5 had a mitochondrial facial bleed and that ended in a three hour surgery into his little head to stop the bleeding. T5 ended up not only in the same hospital but alongside the very ward that out Robert had been in when he passed. This was so very traumatic for our family let alone for a family and little one with classic autism. It was devastating to see him go through this and we had no way of making him understand that we were only trying to make him well.

He now won’t let any one touch his head for anything. His hair is so long that he is looking like no one has brushed it in a year. We will get there. Slowly as with everything else and one step at a time.

My seventy two year old mum had some health scares that required hundreds of kilometers in travel back and forth to tests and doctors. She is away at the moment having tests and seeing even more doctors to try and sort out what is going on there. Even more things to worry about.

On a happier note;

I attended Problogger 2013. Met the most amazing people and one in particular that has been a god send in my life. Spent some time away with the boys where I met some beautiful people. I would like to say it was a rejuvenating break but unfortunately with autism times three I can not really say that was the case but they are stories I will share with you in detail over the coming weeks and months.

I renovated my house. Not a great plan with autistic kids. Did I mention they don’t like change. Lets renovate the house Coralie, now that sounds like a grand plan. It wasn’t. On the upside the boys have a therapy/gym back again and we have been working hard on some much needed goals with them in a much more comfortable place for everyone involved.

I spent some time in Sydney with a dear friend.

I connected with some old friends and ended some other relationships that were not working in this life of crazy. Sometimes we have to do what is best for us and stop worrying about everyone else.

I was blessed with friends that understood that I could not be everything for everyone and that I had to step back to simply try to keep my head above water. That for a time it just had to be about me.

The pilot boy took over for a few weeks where I cried and slept and cried some more and slept some more. Where I closed the door and turned the phone off and was just in a place I needed to be. The place I needed to be to be able to be okay again. I think I am getting there a day at a time. I can not thank him enough for having that time off work and supporting the boys when I no longer had the strength too.

I rejuvenated my blog from just a blog to a full website that you now see with the help from my darling friend Shari over at Teenager Survival Coach. We found ourselves high fiving each other along the way as together we overcome anything that the evil technical internet threw at us. All jokes aside she was wonderfully professional and patient beyond words with me as we got to work. It is still a work in progress but I am so pleased with how it is looking. There are still a few pages that need to be finished and some blog posts in the wrong position but I could not wait to get back writing to you all. I would love to hear what you think.

I received some beautiful expressions of love and support from people that I only know behind a computer screen. I am so sorry I have not been able to be there for you but I am so very grateful that you have been there for me. In some of my darkest moments it was your kind words that pulled me through.

I had a cancer scare that left those close to me waiting with baited breath and me personally terrified as to how I was going to cope. As a family we did and everything is now back on track.

Finally my mentor and a dearly adored friend Klaus Bartosch was diagnosed with Acute Leukaemia. I was thrown for six to say the very least by his diagnoses and can not say how angry I was. Angry and confused. The day after Klaus was diagnosed he texted me and asked when I would be writing again because what I had to say was so important. He is diagnosed with Cancer and worries that I am not sharing my story. As I have said on so many occasions this man continues to amaze me.

Klaus was about to ride in his second of six Rides to Conquer Cancer as the Captain of the Vision Crusaders Team when he became ill. The team that he dreamed could be and was because of him and his passion to make a difference. A team that went on to ride in the six rides to conquer cancer across Australia and New Zealand and raised $250000 for cancer research. All with the spirit of their Captain on their backs pushing them along.

Klaus had extensive EXTENSIVE chemo therapy and with his darling wife Edith and their children by his side he is now in remission. Klaus once again taught me the biggest life lesson; NO EXCUSES. NEVER EVER.

I want to thank Klaus and the team at 1st Available yet again for believing in me during the past few months when I was lost. Believing in me and yet again helping me out of the darkness. For their understanding and grace as always. I want to also thank the people at Belkin and Closer Communications for their understanding and patience during this time. I have some wonderful posts coming up that I will share with you real soon.

Thanks to my beautiful family that allowed me to be and feel however I needed to feel. To my treasured friends for your love, support and silence when I needed it. To you all reading this that sent me cards, gifts, flowers, letters, emails and messages of support when I needed it the very most. They were and will forever be treasured.

So I am doing pretty great right now and I have just signed up with Kate and Zoey over at Operation Move to do just that. Get moving and jump into 2014 with all guns blazing. No new years resolutions or I am gonna do that. I am just doing it… After all there are no more excuses and I wouldn’t want it any other way.

What do you think of the revamped website and the new and improved Mum Talks Autism?

Remember…You’re Never Alone.

coralie sig

Mum Talks Autism is linking up with Jess over at Essentially Jess for IBOT.

 

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