Family Life

Family Life

Sunday, November 23, 2014


Coming up to christmas our little family prepare for a BIG holiday. In a little over 4 weeks we will be embarking on the holiday of our dreams. For a very long time Kent and I have dreamed of travelling and camping our way around our beautiful country. we dreamed of long trips, and just pulling over to camp wherever we felt we wanted or wherever looked nice. we dreamt of long walks along beaches and refreshing splashes in little picturesque water holes. Originally our dream would be to take a few months off and just wander whoever our hearts took us. As time passed this dream has been broken down and when Kent was diagnosed with cancer it was put on hold and almost forgotten about. 

But we have decided to do it. My sister who lives in Darwin is travelling to Queensland for christmas to spend it with her partners family, and we decided, on a whim, to kick up our heels and just do it, we are going to meet her and her family in Queensland for Christmas. The kids Finnish school and then we are out of here. We jump on the Spirit of Tasmania for a day sail in on the 20th december, and then, camping our way up, we have just 3 days to get to Queensland, as we have planned to spend christmas eve at the fun parks, and to camp, with my sister, christmas Day. 
Its going to be tough, we have little money and both Kent and I suffer form chronic pain, and Toby doesn't sit well for long periods in a car seat. However, we are going to give it out best shot, well stop when we need and drive when we can. Our Plan is to call into Summer Bay (Palm Beach) so the kids can see where Home and Away is cast. and go for a swim on the beautiful beach.  just some great photo opportunities and something special to do. other than that we have no plans. Just driving, Camping and Family time. and I just can not wait for this. 

Our trip will see us spending christmas in QLD with my twin sister and her beautiful family, and on boxing day, I will fly back to Tasmania with my 3 other children, bringing them back to spend time with their father, and I attending, my best friends wedding before jumping back on the plane to meet Kent and Toby at Rockhampton.  There we will spend a night with my cousin on her beautiful property, before heading on the Townsvill, travelling and camping with my sister.  before breaking apart and leaving just Kent Toby, and myself to find our way back,  Kent, Toby and I have around 3 weeks to get home, and not plans as to how we will do it.  WOW, 
I just can't wait, we are thinking that we will head back through the center to South Australia and then back along the great ocean road before boarding the Spirit of Tas to come home again.   Talk about the holiday of the life time.  I am so looking forward to early morning sun rises, splashes in the ocean, the smell of salt air, as well as the heat of the sun as it lashes the harsh terrain of outback Australia. the many animals that we will see, the many flora that we will smell. I cant wait to teach Toby and the others all the Real things in life. all the beauty that there is in our world.  I cant wait to take our time to do whatever takes our fancy that day. I cant wait to do the fun parks and to see the wonder and excitement on my children's faces, oh man, I just cant wait. I feel so very blessed to have this opportunity. To have the time to spend together as a family, to have the option to complete a long awaited dream of ours. the memories that we will make, will stay with us for a lifetime. I am so very thankful that myself and the children will remember this holiday with Kent well past the day that he is no longer with us. This is our chance to make memorise. our chance to be family our chance to explore our amazing country, 
Just cant wait!!!

About 2 weeks ago we were having a battle with Toby not wanting to wear his Cochlear Implant Processors, we thought that is was due to that fact that we have to tape them to his hear, and double sided tape to his ears. we thought it was because the tape pulled, and we were trying to think of ways to help him, but really the only way to hold them on his ears is to tape them there. But one of my special Face Book Friends (a mother of an older child with severe CP) suggested that we actually ask Toby why he didn't want to wear them. Duh!  why didn't we thing of that. 
So we pulled out his special PODD communication book, and asked him why? expecting to know the answer we were both shocked and completely heartbroken to hear him say that he didn't want to ware them because they made him different. wow, how do you handle that? 
For the first time ever Toby had expressed sadness due to his disabilities. I knew that it was coming, I knew that one day we would have to deal with it, I just wished that one day was a long way off. To hear this from Toby, brought about our sadness for him and stirred up many suppresses emotions, grief for all the things that Toby would never be able to do, for all the dream that have had to be altered or forgotten as his abilities differ so much to our dreams and hopes for our son. 
To hear that at just 5, he was starting to understand that he is different and to start to reject that was just heartbreaking. 
Immediately we knew that we were our of our depth, we sought help with a social worker with the RIDBC, (Royal, Institute of Deaf & Blind Children) in Sydney, and I have a very informative session with the psychologist. who deals with non verbal children all the time. she explained that although it was a sore spot for Toby that we  had to make him put on his cochlear implant processors just like we would make him brush his teeth, we had to make it, a NO option subject, as if we give him an option he will be loosing valuable hearing time and could develop tinnitus due to the hearing nerve trying to search for sound.  
Kent and I didn't like the idea of pushing him to do something he didn't wish to do, as Toby is such an easy going boy and doesn't normally make a fuss. We have been working so hard to give him a voice, that we didn't like that we would be taking it away form him by forcing him to wear him processors against his will.  now we have such a tough decision, 
He does not complain, he does not wish to run, to play rough & tumble with the other boys, he never gets upset over his lack of ability to do the tasks that we all take for granted,  he very rarely even gets frustrated,  so for us to ignore this reaction is a very tall task.  Although for the greater good, maybe, he just doesn't want to hear? It is interesting that, with all his differences, and all his disabilities, that he has chosen this… his hearing to be the first upsetting factor.  it is probably one of the only ones that we can actually fix for him! 
Kent and I thought that we needed more guidance regarding this, and upon discussion which his school, they too could use more guidance upon Tobys actual condition and different ways to help get the best out of him. so we have decided a visit to the RIDB centre in Sydney would be worth while. we video conference with a speech therapist from there once a week for a therapy session, but a Trip to the centre would provide a full assessment, including medical, physiotherapy, speech therapy, occupational therapy, ophthalmological assessment, and psychological assessment. it could give us a good map for the next few moths to help lay good foundations for early next year in prep and beyond. This trip is a must.   So next week we will be bound for Sydney, to help us answer some uninsured questions and to help us deal with the many hard days with Toby to come, as he learns to accept his different abilities and the many differences between himself and his class mates. heartbreaking as it is, we are thankful that we have the help of a fully prepared team, who are there just to help us as we need. despite a few teething issues, they are all there to help us on this journey. Without them we would be lost.  

Always been a hard thing for us to do, both Kent and I have always love to get out and about. When we first met we use to take every opportunity to  get away, a long weekend, or any weekend, we would take off, traveling around we would try and book a spa cabin so that we could stay in luxury, it was our thing, to jump into the spa together and enjoy a bottle of wine or two, Cradle Mountain, picturesque Stanley, Hobart, anywhere we felt the need, we love to go camping we can rough it with the best, however over the years we have managed to build up some pretty crush equipment and now we camp in luxury. I remember we got engaged on a trip to Wickham where we were visiting with his sisters. Ever since Toby came into our lives, our travelling has slowed down a lot, we still go camping, we still fly, but we don’t very often get the chance to take off for a weekend spa. 
Our Travel has changed,  it now comes down to matriculate organisation. we have to carry spares of just about every thing, as with with us, we have realised over the years that, what ever can go wrong will usually go wrong. Im siting her at the airport typing this, we are waiting to get on a plane to Sydney,  without Kent this time, he's not well enough to travel and asset me with Toby, so Iv taken Larissa this time, she's our pac mule. 
We have carry on bags, we have toby in his chair, we have drinks, the laptop, iPads, I phones, handbags, the list goes on, and somehow we have to carry all this, plus Toby up into the waiting plane, balance Toby precariously over my shoulder in a Fireman’s like carry, while I hand over our boarding passes.  No one help you, they wouldn't dare, for they might get sued if something goes wrong,  don’t get me wrong they do mean well but they don’t actually help, This time we are getting the lift to the top of the stairs, but I still have to carry Toby, he’s too floppy to get into the aisle chair that they airlines have. we have booked a upper torso harness this flight although I needn't bother as it wont really hold him in place,  nothing really holds him, but Ill sit him between myself and Larissa and well squash him in. Well support him up the whole 2 hour flight to Sydney, then be the last to disembark, waiting in the heat, hoping with everything that they will have his wheelchair waiting at the gate for him. hoping it hasn't been lost. 
Travel has become harder, It involves, making sure we all have enough medication, making sure we have batteries and chargers for Tobys hearing aids, he is tube fed too so that includes tubes and feeds to take to keep him nourished, this trip we are staying for a week and Toby is on a blended diet that means that we blend real food up into an oblivion and then push that through his gastrostomy, so Today we have a blender packed in out bags, just incase there isn't one at the school we are staying at. 

Toby needs his nappies and snacks and oh we must take his PODD book, his words… next trip Im guessing well be taking his Eye gaze computer too. it never ends. we could fill a trailer full if we could carry it. oh in fact we are taking a trailer on our next trip,  but its loaded full of camping gear and will be u much more enjoyable trip than this. 

Flying with a special needs child is hard,  Flying with any child is hard,  but one that cant walk, cant talk, cant sit… its so draining. but its worth it. when we get to Sydney we have lots in store for Toby, lots of assessments this trip, we are visiting the RIDBC, the Royal Institute for the Deaf and Blind Children for Toby to undertake a series of assessments, so that the school can assertion exactly where he is at with his learning, and the best ways to get the most of him. We are hoping for big things, we are hoping that the eye gaze computer that is coming will assist with this, but we are really looking for his motivators and how best to help him move forward. Im also looking forward to the heat of Sydney, most people dont like the stifling heat but love it, it makes my back feel so much better, I an move more freely and I feel so much happier.  bring on the learning and the warm weather,  stay in touch, to see how we go…..

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