Family Life

Family Life

Tuesday, November 18, 2014

So where are we now?…..

Toby has been attending Kindergarten at our local mainstream school, and he has been accepted as just another child. The school have been amazing at including him, and both his teacher and teachers aids are amazing, they work tirelessly to ensure Toby doesn't miss out on a thing. 
Toby is bound to his wheelchair. he can not sit without the special support that it provides. Toby can not stand, walk, or even talk. however he does not miss out. His cognition is amazing and he understands everything that is going on. he is like a little sponge, absorbing all the information, but he has trouble getting it out. being non verbal, he uses a special book to communicate, but that is all about to change. Thanks to a very special man we were able to purchase him an eye gaze computer. at a cost of around $20,000 it was way outside our reach, but Ian decided to help us, a organised a fundraising marathon. He ran 42km and raised all the money needed to purchase this special computer. It has now been ordered and we are anxiously awaiting its arrival.  Toby will be able to use this computer with his eyes. in the coming weeks he will learn how to use it and how to make it talk for him, as it will have special software on it that he can use for a voice. just like his special book he has now, but he will be able to use it independently, and for us that is a huge thing, all we ever wish for, for Toby is to be as independent as he can. and personally I hated his special book. Although it has given him a voice, he has always needed to rely on someone else to turn the pages.  Now   with this special computer system, for the first time, Toby will be able to communicate on his own. That is so empowering.  Amazing,  and we will be forever grateful for Ian and all of those who helped to fundraise the money. 

Those that know Toby, know that he is a cheeky boy with a wonderful sense of humour and despite all of his obstacles he has never let anything get in his way. Inside he is a typical 5 year old, he loves to play with his friends and at school, he has lots of “girlfriends”. the girls like to play dress ups with him. Toby can count, and he can spell his name. he just does things differently to the other children. His Teacher aid is great as she assists him in every way, including in play. But the children, they are amazing. Times have truly changed, Toby is a star in his class, and nobody sees his wheelchair. They talk with him though his book, and the girls love to help him thought his morning routine of unpacking his bag and putting his drink bottle away. They help him choose his name to put on the board and they share there weekend stories with him, just as they would a typical child. Toby just “fits” into his class and the school. 

He is learning how to use his powered wheelchair, he has a head switch that enables him to use it independently. He is greatly encouraged on by his little friends at school, who are all amazed by his technology, and are eager to help Toby in any way they can. 

Earlier this year our resolve was tested again, as minor back surgery went wrong for me, casting me back into the world of pain and subsequently onto workers compensation again. deemed unfit to return to work, I was lucky enough to be able to negotiate an agreement with my new employer that allowed me to have 6 months leave to hopefully sort out my back issues, so I can return to work.  

In some cruel twist of fate, It was fortunate that I have this time off work as not too long after, we discovered that Kent’s cancer had spread to his bones, he had to have a partial hip replacement as the cancer had eaten away the top of his femur, The surgeon, a friend of ours promised that he cut and scraped away as much of the cancer he could, and he must have done the job as just last week after an intensive review we got the all clear of cancer in his bones. However the cancer in his lungs, continues to grow, and he will need more chemotherapy early in the new year. 

Kent still battles with lots of pain from his surgery, scar tissue is causing him a lot of concern, but his doctors are fantastic and are on to it with providing lots of pain relive medication. Despite his pain, we continue to try to live a normal life. As normal as we can anyway, fitting in as much as we can but also allowing for rest time. Me with my crappy back, fighting depression and Kent with his crappy lungs and bung hip, & Toby in his wheelchair, we must be sight to see walking up the street, hobbling, limping, and wheeling away. but we get on with it. Thats what makes us special. despite adversity, together we make it. and our love has never waned. Together we can fight any battle. 

Oh and we are whole again, my family is complete, Larissa has come home to live and I couldn't be happier. All of my children are amazing, all of them have had to deal with so much more than most adults, and yet they still stand. Love keeps us together, Love keeps us strong. Together we are Family!

SO now you are all just about up to date. 

I have  given you the short version, 

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