I went to visit my son Thomas today. Thomas is 16 and has multiple disabilities as a result of meningitis as a baby. After the death of my husband 4 years ago, Thomas became increasingly difficult to care for. He was growing quickly, approaching puberty at the same time, while coping with a lot of radical changes in the home environment. I was emotionally shattered, as were the rest of the children and for Thomas, who has no verbal communication, life must have been very difficult. He became more and more demanding and for him this was done physically. It got to the stage where we were all on tenterhooks waiting for his next outburst of rage/frustration.

 

We would have been able to manage if we could have just been able to secure some on going respite. Sadly things in this state of NSW and particularly in the Blue Mountains are so neglected that respite is just about impossible to obtain. Finally in desperation the Local Service provider organised some out of home respite for him and during that time I was forced to call child protection and tell them I was no longer prepared to take care of him and he was declared ‘homeless’. This just about killed me as I had always thought I would always be the one to care for him. I recognised though that I had reached a point where I could no longer give him the care he needed, as I was emotionally, spiritually and physically drained.

 

He has been out of home now for 18 months and it still breaks me up every time I visit him. I just want to wrap him up and bring him home, but I know I can’t. As much as it kills me to be in the situation we are, I can’t go back.

 

So every time I visit him I end up in tears. He has been such an inspiration to me and taught me so much about life that I would not have experienced any other way. For some reason today was particularly difficult. Could be that I have been running on an average of about 3 hours sleep for the past couple of weeks, or that I am just particularly sensitive at the moment. He was so happy today. I called in to see him at school and sat with him while he ate his lunch. He kept reaching over and giving me kisses and cuddles, putting his arm around me and mine around him. He seems so peaceful now and I am so happy for him that he is and that people want to be around him again.

 

He was always such a placid easygoing boy, warm and lovable. This contributed to his escalating behaviour as being so hard to manage; up until Colin passed away he was manageable for the most part with the occasional “behaviour”.

 

I think one of the thing that made today so overwhelming was after I left him I went across the road to the shopping Centre to buy Eddie (my partner) the rest of his birthday present. While I was in the centre a young boy walked past hand in hand with his girlfriend. I realise that Thomas would be doing the same thing if hadn’t become ill as a baby. This made me sad. That my baby boy would never experience the joy of the first bloom of love, to know how it feels to be special to someone other than your Mum. All his life there have been many moments of realisation like this for me and they have all been accompanied by the same sense of loss and grief. I can remember when I was first told that he was blind, for me there was so much sadness around the fact that he would never enjoy the beauty of a sunrise, sunset or a rainbow arcing across the sky, the smiles that were always being directed at him or the look of love in the eyes of those around him. To see the beauty that surrounds us in nature, colours, tones and hues.

 

For Thomas there was none of the things that we take for granted with our children; no best mate, no fights at school, no sleepovers with his friends, no football or soccer or swimming club or any of the things the other children did. No turning up the stereo full bore when angry, no getting caught swearing, smoking, drinking or taking mum’s car for a quick burn around the block. No climbing trees or riding bikes (although he is magic on the roller blades).

 

Thomas seems happy with his life and I guess in many ways it isn’t too bad. He has his needs met and there is someone at hand always to make sure he is warm, fed and comfortable. I suppose as parents though, we want what we think is best for our children. All I ever wanted for my children was that they be happy. I feel Thomas’ loss, even if he doesn’t. And on days like today I feel it more keenly.

 

Well that does sound like a bit of a downer but then life isn’t always a bed of roses or even as Forrest Gump says “a box of chocolates”. Sometimes it is a whole pile of horse manure!!! Fortunately I usually know how to turn the horse manure into a beautiful rose garden and the sun will come out tomorrow.

 

On something more positive as it is my darling Eddie’s birthday, I wish to thank all those responsibly for his birth and keeping him alive until I found him. Eddie you are the light in my darkness and I love you more than words can say.

 

On that note I am now going back to writing the next stage of July horoscopes for the website – which by the way recently won an award, of which I am very proud!!!

 

Until next time…….

Hey Mum,
You are the best mother in the world and Thomas and the rest of us are so lucky to have you there for us. Please don't feel sad for Thomas, he would not be who he is today without the time and effort you put into giving him all the love you could and helping him learn all that he could. Thomas would not have had any of the opportunities he has had if he had any other mother because only you could have the patience and stamina to put your life to the side to give him all you had in the world. We all know what you gave up for him and us.
We all love you and you really mean the world to us all. Especially Olivia and I.
I LOVE YOU FOREVER
KITTEN XXXOOO

Thankyou Kitten, I love you all as well and I appreciate your thoughts.
TTYS
Love,
Mum XXXXXXXXXOOOOOOOOOOXXXXXXXXXXXX - you have to share those with Olivia.

i really understand this website quite well, and i am going to live by it. it has changed my life and outlook, thank you so very much.:)o:)