Merry Christmas

I believe in Christmas.   I believe in family, I believe in love hope & happiness and today that's what we are celebrating.  The spirit of Christmas.     It's always a hard time of year for me as it's hard when your child struggles to experience the joy of Christmas.  And especially this year being the first without our kent.     We will stay positive. Toby & all other children in our house.   Currently we have 7!  Lol the  morning is going to be fun but that's what it's all about.    I wish you all happiness. Joy laughter & love.  Stay safe and have the best year yet for 2016   As the song goes " im going to love

you like I'm going to lose you. ".  Live every day!!!          You don't know what you have till it's gone & you never know when it's all going to end/change.     Go for  it!   Jump!   Leap into the new year and anything bad that gets thrown at u.... bring it on we can deal with it.     Love you all. 

New beginnings

Thank god for visitors ❤️& friends For visitors After such a mix matched crazy start to this year. After suffering through tremendous hurt, nursing with all my heart & drowning in feelings of immense guilt when I was unable to save my own husband.  His sister and I worked around the clock to attend his ever need. Lastc24 hours of hell, he swang from consciousness & wanting to sit outside on our new deck to talk with family,  to deep deep experiences of pain that were hard to control.  Our only relief was knowing this phase wouldnt last.   

Knowing there was only going to be very little time left once we got him settled for the evening we put Toby into bed with both me and kent. I guess we were hoping he'd quietly slip past in his sleep, we'd wake up  and he'd be gone, peacefully,,,   Kent had other ideas.  He slept with us for a few hours which was just amazing I'll always remember those free hours as simply amazingly satisfied  I pushed out all the doubts, all the guilt and for those moment we just touched, smelt breathed him in, we lied so close we never wanted to let go just thev3 of us, in peaceful harmony..    Broken by the burden of aphasia. . That was the end of the beauty.    However like kent he knew when he needed to behave and once he was washed carefully shaved & ready for visitors things settled again.  His son Kurd in bed with him again, and they got to say their special goodbyes, his brother & sisters slowly made their way throughb, and his parents.... I stepped out to allow them their "mum&dad" moment.  Only. To be called back in quickly as he was about to pass.  The think he was waiting for me to leave the room. Didn't want to hurt me.... I climbed onto be. Tears streaming I didn't know what to do. I just lyed there& held him so close. I didn't want him  to leave feeling like if I hold him close enough his Seoul can't exit and he could stay longer.      But it didn't take long before I felt him go.. Yep I felt it. Bye was still there watching & caring for us    Then I felt him leave!    And now 3 months later I sell can't find his Seoul anyone know how I can find him again.  I need to know he's around for my Toby, to see these amazing changes we are already seeing from his life changing surgery we painstakingly decided to do no love you my here fighting your own battles so very strong but helping me to make battle plans for the future!  You were very brave.   Right to the Ben. We love you with every inch of our lives, & although the I can't feel you I know you would be there watching and waiting for the next installment. Waiting to help us in any way possible. 

Love you beautiful man xxxx 

New beginnings

Tomorrow marks anew day in our journey a pretty stressful day but one that hopefully has a happy ending. Toby is getting his baclofen pump inserted. What does this mean? Well... He's getting a special pump inserted into his abdomen that will control & deliver just the right amount of baclofen a drug to control his movements to his spine where it's needed. Currently he takes oral baclofen but it needs to be in high doses to work as it has to cross the blood Bain barrier. But with this pump he needs minute doses so is less likely to be drowsy and may get back some purposeful movement of his limbs. We are very hopeful that this will help him long term become a better user of his electric wheelchair and his communication device etc. I'm hoping for big things to come form these little movements. I'm scared to death of putting my son through such extream & to a certain point still experimental surgery it's only preformed on 10-12 kids in Australia a year. But for what little Gains may mean so much to his quality of life. It also means that it's almost time for us to come home from what will be a 2 week long break in Melbourne from our lives in Tas. Our lives that have been so disrupted and wrecked that I'm not even sure what we are coming home to.  I'm coming home to my 3 older children & that I can't wait for. But the rest seams like such a distant memory without coming home to our husband our daddy. We miss him so much & know he would have loved to be here on this special day.   Although I can't feel him I know he's going to be keeping a watchful eye on Toby and myself to make sure all will be ok. 

Coming home will be hard. In some ways I don't want to. I want to stay away where there is little reminders of our past, although every day I see daddy in Toby's eyes, in his heart. I don't see him in every room, in every photo, in every seat. To those that wish to put a time line on our grief I wonder what you would do? How you would react? To those that would put a limit to our friendships? How far would you go? We're here were surviving & were living without him every day, it's unfair. But we're doing it and we are pushing on, we will continue to survive & fight but we will continue to grieve as only we know how.  Cheers to tomorrow!! Cheers to new beginnings & to seeing what the future holds we are not afraid to face it head on. 

The aftermath

Today I am weighting. Just wrighting I don't know how, I don't understand. I am strong, I guess I'm still holding your streangth.  

You see on the Sunday 29th May my husband passed away. It was a long drawn out few days, but he pased peacefully in the end. 

I am not at peace. I just wish he was here, I want to give him a wuick call just to say hi,  to say I love you.    To share a moment from our day!   But I know you are watching. You are making sure we are ok before you can be totally at peace I know that.   You wouldn't leave us alone you need to know we will be ok.   And with time we will.    It's scarey.  I'm scared for the first time I drive back to our house alone.  Without you. Kids and all but no you.... How do I comprehend that,    I want to smell you again, to hear you again.  But I am thankful the suffering is over it was so cruel for you!    We miss you baby we love you baby.   But we are ok,   The kids are smiling again even aimee the house is full of laughter although it will never be the same. Your presence will always remain & you will never be forgotten.    I am sorry I failed you. I am so very sorry than my medical skills could not heal you & I will never live comfortably with that. But that's for me to work through.   You were my rock. My stone of help now I feel like I flounder with nothing to grab hold of.  But our kiddies are so strong so for now I'll hold them. I'll hold them close and I'll never be letting them go.    Love you always kent Neilson you are & always will be my hero xxx 

Struggling along

As the first real week of school draws to an end, and all the kiddies are about to drag themselves home, tired & cranky, Toby loses his voice again as his new eyegaze computer has had to be sent back to Melbourne due to faulty batteries, it's very disappointing for us as he was just starting to use it appropriately. Oh well we should have known as nothing ever works well for us, ever. We always somehow get there in the end, but it never works first time. It's going to be a few weeks so for now it's back to the podd book, & limited communication. But well struggle through, we always seem to know what Toby needs, it's at school that's the problem, but we are very thankful that we have a great school. They have just spent $70,000 on a relocatable bathroom for our boy! It has a special electric bed, a shower & a toilet with a Toby sized toilet chair, it's so amazing I want it at home!  I am told that as he gets older & goes to other classrooms the unit can be transported to the back of each classroom and plumbed into place ready for the next year, we are absolutely blown away at the inclusion ability of this school, Toby has cemented his place & is even a bit of a celebrity around school. 

also as the week draws to a close, I'm reflecting on some bad news we got, with Kents cancer growing and causing more difficulties for him, it's getting harder to get out & about but each day is different, ranging from gingerly going out in the boat & having a fun day to not being able to get out of bed due to pain. It's the nature of the disease and it sux. But day by day we will deal with it, forced smile and all. It makes it easier to appreciate the little things, it's hard. But it's all good 

Alone

Writing this post is really hard for me, I don't want to upset people, and there have been many people who have been doing their best to help us and I would like to acknowledge all their hard work.
Today, Kent and I feel really alone.
we feel like we are travelling this journey, a horridly bumpy journey without our back up, without our road side assist.
We feel alone.
Being home from our holiday and trying to settle back into life, its been 3 weeks and we have yet to be able to catch up with the majority of our friends. Not for lack of trying, and I know life goes on for everyone, its a busy time of the year and all of that. but we have rarely even received a phone call to see how we are going.
We missed a lot of things while we were away, I missed my best friends wedding as I sat in a hospital waiting room. Again Alone, hearing that I had to figure out how to get my hubby home before he passed. We were all scared that moment. Ill never forgive myself for missing that special moment my best friend married her soul mate, but I was were I needed to be. beside my sick unconscious husband.
There are many times in life where we need to make decisions that we wish we never have to make, I'v made some horrible decisions in the past and Im sure Ill probably make the wrong ones in the future as we inevitable rush down the roller coaster toward some very hairy decisions. but we can only work with what we have at the time. what we know at that specific time.
I thought my husband was dying. I had to make the decision to get his family up there to help us get him home. We made the decision to cut our dream holiday short and head back home. there really wasn't a choice, it really wasn't a decision.
No sooner as I had rearranged our plans, I walked back into the hospital to see my beautiful husband smiling at me.   I didn't  know weather to be happy or to kill him myself.  don't get me wrong, I was extremely happy he was ok, But I couldn't help but feel disappointed we had to end our holiday. It was the one thing we had dreamed of doing together ever since we met back in march 2007.
We have often talked about travelling Australia, and we'd even made many plans, most of which have fallen through as life has taken many a different turn for us.
So why do I feel alone,   Its a Saturday night and we are home, our friends are out having fun, and why shouldn't they, but I'm envious, with Toby we find it hard to get out, we find it hard to get out with hubby, its just hard, and I wish people realised just how hard,  we can't visit many people, because they have stairs, we struggle to go out as we have limited funds, we struggle to go out as we are both so very tired at the end of the day, we just want to go to bed.
For these and for many other reasons I'm sure, we don't get invited out. keeping friends is hard as they feel the pressures of both Toby's and Kent's illnesses, they find it hard to understand and often don't want to understand.
We feel alone because people just don't understand us and seem to stay away from us.

Sometimes all I want is to hear form my sisters that things will be ok, they don't get it, they get on with their lives and are able to forget about us, they have never seen me struggle, never seen me cry.
I am told I am strong, told I'm a fighter,  Im not, Im broken, just going through the motions. I struggle to drag myself out of bed. Once I'm up, I get moving and don't stop until its time for bed again, its often the only way I can get through the day. Im not strong, I get on with it for the ones I love, I do what needs to be done. what disappoints me is that when times get tough we are left to our own devices. Times are tough, we both feel it, but at least we are together, together we can help each other through this.

Fighting spirit

After a full on week of discovery, some good results some not so good, this family is taking a well earned break, and a trial camping trip, in preparation for our upcoming adventure holiday. We took off to the beach for a night to chill out, & to ensure that everything "works". I'm a controll freak and I need to make sure that everything is 'just right' not easy to do when you are taking off for a month camping around Australia, but I'll do my darndest to make sure it's all great. 

So just after I'm admitting to being s controll freak I'm now going to tell you just how out of controll our lives really are. 

So Toby, Larissa & I all headed to Sydney to the Royal Institute of the Deaf & Blind Children RODBC where they put us up for the best part of a week to do some assessments on Toby, to hopefully assist him and his teachers for school next year & for setting up his eyegaze computer and for us to best help him with his hearing and communication.  Communication is a huge thing for us, given Toby is deaf and non verbal he has never really had an issue getting his needs across to us. But those that dont know him struggle to 'talk' to him and understand him and he can't just 'ask to go to the movies' or something outside of what we pre empty for him. For us this is unacceptable. We want & have always wanted him to be able to communicate as effectively & independently as possible for him & that's why he's soon to get a super computer that he can use with his eyes.  But currently he has a special book. A PODD book that uses specialized pictures to help him tell us his needs but it hasn't been working that well. 

This week we found out that although his actual vision is ok he has a Cortical Vision Imparememt. Which means that his brain struggles to understand what he is seeing and it can be hard especially in times where there is lots going on & lots of noise for him to make sense of what he is seeing therefore his current PODD book, just won't work for him, there's simply too much information on each page, makes sense, that's why after 12 months he is still struggling to use it propperly. 

Yet another "diagnosis" yet another thing our poor little man has to coap with, but for us this diagnosis although crappy, is kind of positive. It explains a lot!  It's what I knew for a while, without actually knowing what it was. I knew the book was too much & have been fighting with speech therapy for a long time over it so in a way it's nice to know I was right & now we have the proof and can focus our energies towards the right way to el Toby!   That was discovery number 1!  That was ok.  I can deal with that, something not so good, but not so bad either. 

The next discovery....... Not so good. 

While we were away Kent stayed home & was off to the Drs for an ultrasound on his hip.    He's had inconsistencies with his pain since having his hip replacement in June. He was recovering well but then started to get more intense pain, we were worried it was the return of his cancer and he went off for X-rays, ct scans and bone scans. Amazingly all came back clear for Cancer in his bones, we wre greatly released but still concerned that something was amiss as he is still requiring lots of pain relief & struggles to do most things.   

This week he went off for an ultrasound after he pushed the doctors saying it feels like a giant "corky" something has to be up!   

The results weren't great. They were horrible. Although one could say it was expected it's still Another huge blow to our little family. It showed 2 small metastatic densities mixed up in the scar tissue. The cancer is now in his skin cells. He can't have any more radiation as he's had too much for that site, & we aren't interested in chemotherapy until we get back from our trip as he wants to be as fit & healthy as possible. & chemotherapy would make him Ill & potentially even hospitalize him while we are away, it's also not guaranteed to do a lot anyway so we decided to take the risk.   A crazy risk, one should never have to decide between a family holiday & chemotherapy,  it just sux!  There is no other word for it, no more to say!   It sux! 

So after that week we have taken time out and taken to the beach one of our favorite places. Time to just be! 

Climbing those steps

A few days ago, we attended a christmas break up party for the children in our Deaf community. It was held at the local water slide, which is an interesting place to hold this kind of event, given the children can not use their hearing aids / devices in or around the water. so the deaf children, are…Deaf.  I mean ,they can not hear properly without their aids. Anyway, so we arrive at the slide, knowing full well that it was also a totally inappropriate place for my child for other reasons. He cant walk, or sit up, or hold his own body up at all so, how was he going to get to the top on the slide? last I heard there weren't many watersides with lifts to the top so that the physically disabled could have fun too.  

Despite it being inappropriate for Toby physically, it was totally appropriate for him developmentally and this created a painful issue for us.  Toby cant walk to the top, and his daddy couldn't get up those stairs either, with out much puff its hard to climb stairs. Aimee came with us but she isn't strong enough to carry him, so that left me. All good Im happy to work hard, except I also have a medical condition, a very bad back from a work injury. I struggle to lift Toby now simply into and out of his bed is hard. However I have found that if I throw him over my shoulder like a “fireman's carry” then I can lift him for longer distances, but this was going to be a challenge, there are some serious steps leading up to the waterside. But how could I not, how could I let him become left out? I have worked so very hard for Toby to be included, and he wasn't going to miss out on a simple childhood pleasure, like the water slide, he’d been on them before when he was much lighter, and we know that he just loves anything like this, anything that creates a thrill excites Toby. 

So with a big deep breath, over the shoulder he went, one step at a time, up the slide I climbed, I wouldn't let it defeat me. I new what would surely be waiting for me at the end. As I climbed the stairs I realised again that this was just one of the many sets of steps that I would have to climb for our Toby, in a world that is designed for the abled, there are no elevators to fun for the disabled. Never thought about, until Toby entered our world, never questioned the lack of facilities especially in our home area, the North West Coast of Tasmania,  we don’t even have a disabled friendly playground, there are no slides that Toby can slip down, not without breaking his mummas back. there are no seesaws, or forts that he can enjoy, there is a Liberty swing, in our local park, but it has been dumped there, no thought as to its location,  dumped off to the side, so to play on it Toby would again be segregated from his peers, yet another reminder of all the things he struggles to do. 

Back to the water slide,  so I was climbing up the stairs and all the children seemed to love that Toby was joining in, he’s a bit of a celebrity it seems, and they all were delighted to see him climbing the slide, they let him in, allowed him to jump the Que., (thankfully as he is sooooo heavy) Carefully sitting down, I lowed him to my knees, his little body so tight with excitement, he was gasping the air into his little lungs, as I pushed us to start the slide.  Out came the biggest giggles,  a laugh so infectious, it made all the physical pain of climbing those stairs worth it, it made all the  emotional pain of climbing stairs for the last 5 years, worth it. and thanks to that laugh, to his jiggling, little giggle, I know I will continue to climb those stairs for him, I will do my best to break down those barriers that prevent him from having the same fun as his friends, as why shouldn't he?

Im not sure I’ll be able to get a lift put on every water slide, Im not sure what will happen in the future, as this is most likely the last time he will get to experience a water slide, truthfully, he is too big for me to carry now, but I do, Its sad to think that this could be his last time.. but I know, 

I’ll always be doing my darndest to hear that laugh, to see that smile, to be infected with his love, over and over. He is my inspiration, now…. back up those stairs for another turn :)

Travel.

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.  

Travelling,

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…..

heartbreak

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.  

exciting times

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!!!

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, 

Mental Health

Chemotherapy continued for a few months, and Kent became unwell from the treatment, initially it wasn't too bad, a few aches and pains but after a few doses he was becoming really sick, Ill never forget the day he couldn't get out of bed, in all my years of knowing him Iv never seen him so sick, it was scary, he was so weak he struggled to get to the toilet. These days were not fun but we managed through, with the help of our families, we were living with my family, up stairs in my old family home, and although we needed the help and have so much appreciation for my parents for taking us in, my nerves were fried, I struggled with every day. 

Personally I was suffering with depression well before Kent’s diagnosis, with a long standing workplace back injury I had struggled with the time I had taken off work and the different treatments for my injury, I was a mess before that horrid Christmas, in fact that christmas day was marred with my moodiness and scars that I am sure I have left on my family by my behaviour, Suffering from depression and severe anxiety, but trying to hide it as I felt ashamed, I was so ashamed already at being off work on workers compensation that I didn't want to admit to myself or to anyone else that I had depression too.  I was angry that I had a back injury I was angry that I had constant pain and I was angry that I couldn't work the career that I loved and worked so hard to get to where I was.  I was severely depressed and about to seek help but once we got Kent’s diagnosis I pushed it all behind me. I needed to help him, and he needed me. he needed me to be strong, so some how, I have no idea how, but I pulled myself together and just got on with it, I did whatever I needed to do to keep us afloat, those months went by in a blur, and so I wont go into too much detail, mainly because I cant remember most of it, I think Iv blocked it out. But once Kent’s Chemo was finished, and all treatment had been given, everything stopped & we had to just wait for a while, just wait to see what happened next.  I didn't do well with that, My world came spiralling down, I burned out. The depression came rushing back to me hitting me with full force, however this time I sought help. I remember not knowing how ask, I felt ashamed that my husband was fighting so hard to stay alive, he wanted to live so much yet every inch of my body I just wanted to throw away, I didn't want to be here, I didn't want to be living through this, how do I explain to someone who is doing everything possible to survive that I didn't want to?  So I sat down, and wrote a letter to my husband, & to my doctor, as I knew that I didn't have it in me to say the words out loud, I handed the letter to him with shaking hands, not knowing what to expect, I just felt ashamed. 

I needn't have, he held me close, he comforted me, he understood.  and together we went to the hospital. I admitted myself to a private clinic so that I could get the help I needed to keep going. For a while I had to hand over control, I had admitted defeat, I was in a bad place. 

I spent several weeks in the hospital, recovering, and learning ways to control my anxiety and my fears of the future. but I really just needed the time out, that was what my mind craved, time to just shut down and press the restart button. During this time, I pushed people away, I alienated some of my family members, and I hated myself for this, at the time I needed them the most, I pushed them away. and to this day, the damage has been done, and is seemingly irreparable. I have to live with that. and for now that is ok. 

A period of shut down time was just what I needed. I was suppose to be learning ways to control my anxiety, learning self awareness, and enduring Cognitive Based Therapy. however I don't do well with quietness, I don't do, “self awareness”, I just needed time out. 

Im not even sure I felt better when I came out,  I was semi refreshed, recharged and ready to continue fighting. but feeling better within myself? I don't think so.  That was over 12 months ago now and I still suffer with this horrible depression, every day is a battle for me, every day I get up I put on a mask, and I pretend that it is all ok. I hide my thoughts, keep them locked away during the day only for them to come flooding back with a vengeance at night, but at least I can get through the days. I still have the strength to get up each day, I just manage my way through, any way I can. whatever it takes to get though. I keep telling myself I am ok. so for now I am OK

Wow where to start?

It's been a long time since I have posted, and oh my gosh, a lot has happened. I don't even know where to start, so.....

Im starting from the worst day of the last few years one of the worst of my life,  

New Years Day 2013. 

Kent, my beautiful husband had spent christmas week, waking up with a swollen head and neck, shocked, I asked him repeatedly if he could breathe properly and if it was painful etc, we had no answers and as the day went on the swelling went down. As it was over the christmas period and he didn't appear to have any other symptoms, we put off seeing the doctor, however on new years day I was concerned as it wasn't getting any better, I sent him off to the Doctor.  He came home with and appointment for a CT scan the next day, I knew that wasn't a good sign and I couldn't sleep all night thinking the worst, my fears were confirmed when the next day he didn't even make it home from the scan before the GP called him and told him to go straight to the Emergency Department.  I called my parents to come and watch the children so I could take him to see what was going on, there was talk of a mass.... He was rushed through the emergency department and taken to a procedure room where they put in a drip and talked of reducing the pressure of the mass... it was a little while before we were really told what was happening. with very little information we were then told to go home, pack a bag and go straight to the Launceston Hospital, a bigger one than our local abut 2 hours away. Still shaking when we went home to pack, Kent;s family had arrived along with mine and we told them all we knew. Kent had a mass that was around his Superior Vena Cava and it had reduced the flow of blood that was returning back to his heart to less than a pin hole. we were headed to Launceston for Emergency Radiation Treatment to hopefully reduce the tumour so that the blood could flow better. and they could do further tests to know more about the dreaded mass. 

My nursing Degree kicked in, I acted on impulse, I felt numb, but I had to stay strong for my man, I knew It wasn't good, I knew we were in for much more bad news but I tried my hardest to stay positive. I bargained with my life, thinking up different offerings I could give to change the results that were coming our way. But nothing could prepare us foe what was to come.  

Arriving in Launceston late at night we were given more information, Kent has what is called SVC syndrome, (Superior Vena Cava Syndrome) it was what was causing the swelling when he was waking up in the morning, It was a large tumour that was wrapped around his SVC and leeching into his heart muscle, it was restricting the blood flow and so the blood was pooling in his head and neck and lymphatic system while he was sleeping.  The Tumour is Lung Cancer! Stage 3A Adenocarcinoma to be exact. and Just like that, our world came crashing down. shattering into splintered shards all too sharp to place pack together. People don't recover from this, there is no operative procedure they can do, the position it was in meant that there was no option for surgical removal. They needed to treat it with radiation immediately to reduce the size so blood flow could return to his heart. With no time to digest this information Kent was tattooed and measured up for radiation. His regime started immediately and so did chemotherapy.  Those shards of our life were slippery to put back together, But I some how we managed through those first few days, stumbling over words, neither of us really knew what to say to each other, we didn't know what to say to family, and we didn't know what to say to ourselves. All I could think of was what if I have to live this life without my one true love, my heart was breaking and It felt like hell. I wasn't sleeping, running though all the things we had yet to do, I wanted to grow old with this man, I wanted long walks along the beach I wanted hand in hand squished on a comfy sofa with a quilt over our knees, watching our grandchildren, great grandchildren play happily in the sun as it streamed through the windows. 

I wanted working holidays in Sudan where I was nursing children and Kent was helping build houses. We had Dreams. We had so many more dreams, and so many that we hadn't even thought of yet. In a matter of a few words it all came crashing down, your cancer is Terminal!

The world stopped spinning. 

Everything happened in very slow motion, days rolled by and I don't remember how,  but we fought through, one horrid day at a time, Radiation, chemotherapy, PET scans, CT scans .. a whole new vocabulary that we had to learn, a whole new life.  we just went on, I don't know how, we just did what needed to be done, then at one Oncologist appointment we had decided that we needed to know more, we needed to make some sort of plans, so we needed to know exactly what we were dealing with, the time of living in blissfully unawareness was to come to an end. we asked the question,  How long? 

the doctor initially said, You don't want to know! 

I knew that wasn't good, my stomach lurched, I wanted to vomit, I could feel the saliva forming in my mouth, Swallowing it down, I said “yes we do, we really need to make some plans.”

The doctor said, “ its not good, it could range from a few months, to 10 years, but if you want a more specific answer Id say most people at your stage would have maybe 2 years!

I cant explain how I felt at that moment, it was a mixture of relief and horror at the same time. I guess I was expecting it to be more like a few months, so I was relieved that it was likely to be much longer but in that same minute, with those words the doctor took away all of our dream. how could we pack a lifetime of memories into just 2 years? words couldn't explain how I felt, and I can not imagine how Kent felt, never could I imagine It was hard enough for me knowing that this horrid disease would take my husband from me, but for him, finding out your life has an expiry date on it that is much shorter than you ever dreamed. I don't know how he did it, but he held my hand and said, its ok well be ok, Iv never seen a stronger man, than in that moment, he was worried for me. he was consoling me, yet he was the one that had received the death sentence, How could he be thinking of me at this time? but he did, he held me so close and confirmed… well be ok.

That trip home was the longest 2 hours, time seemed to just float by as we tried to make senesce of what we had heard. we talked about how we would tell our families and what we would tell the kids. Oh my gosh the kids were a whole other kettle of boiling water. 

Fortunately they had been at their fathers house for the christmas holidays and had missed out on this whole saga. They knew nothing, a small blessing, it made it easier for us to get a handle on our own feelings before we had to deal with theirs. but it was to come. something else we had to think about.  But for now it was just us, Kent Toby and me. Toby was along for the ride, he knew something was up, but didn't quite know what. 

Things got interesting at one stage, Kent was in Launceston for radiation and I was stuck in Burnie with Toby in Hospital, he was dehydrated and had a nasty chest infection, he needed IV antibiotics. Toby was refusing to eat and had a nasal gastric tube inserted so that we could give him much needed nourishment. he was a very ill little boy, so we had not only lents cancer journey to deal with but Toby’s being unwell to add to the mix. 

Then, with another stroke of bad luck we were hospitalised just a few beds away from my Ex husbands step daughter.  In another cruel shard to add to our shattered family, my children's step sister had been diagnosed with cervical cancer and was in the final stages of her illness. She was just 17 and was very seriously Ill. I wont go into that too much as I know very little about that situation, just that it was affecting my children and they were living that horrible situation with their father as they were with him and his family for the school holidays.   

Anyway, she was hospitalised just beds away from us, and I was doing my best to keep away from that situation, we were dealing with our own horror story and didn't need to add any more trauma. Things have never been great with my ex since we split up, and he got remarried, with nasty court battles over custardy of my three eldest children we were at a stage where we were not talking, not even the slights text message to find out what time to pick up children was passes without nastiness.  So. it was a very uncomfortable time for me.  I didn't want to add to the nightmare that they must have been facing knowing that their daughter was in the final stages of her illness. so I hid ourselves, just me and Toby, in our single room, with the door firmly closed, hoping that they didn't know that we were in there, I was too scared to even go out for coffee, as I didn't want to bump into anyone from that side of the family. of course it wasn't long before they knew that we were in the bed just down from their daughter, and things got even more uncomfortable, as their family members would linger around just outside of Tobys door, I was hoping that they would just keep to themselves, but unfortunately, they seemed to make a point of being around and hovered in the hall when doctors were seeing Toby. I was very frustrated as I made a huge point of staying out of their way, I locked us in a tiny room for almost a week, so that the family could grieve and do what they needed to do without my presence, I knew they didn't need any bad, awkward, uncomfortably situations with me thrown into the mix of the horror that they were going through.  and I didn't want my three eldest children to know anything about what had been going on with us, Kent’s illness and Tobys illness until we had a chance to talk to them properly about it. we wanted to be able to sit down and fully discuss it so they knew what was happening. I remember locking us in the room and knowing my children were just outside our door, they were walking backward and forward as few times as they went to get ice-cream from the canteen, blissfully unaware that Toby and I were in the closed door right next to them. I didn't want them to feel uncomfortable and awkward, as if they knew we were in the room they would feel torn between who they should be visiting, and wouldn't want to make their dad angry by spending time with Toby and I, and I didn't want them to know about Kent until I could hold them, and tell them that it would be ok, we would get through it together whatever was to come, together we would be ok. so we hid,  It was heart braking knowing they were just behind the door and after all we were going thought all I wanted to do was hug them, hug them and never let go.  but we hid.  we hid for them, so they weren't torn apart, they weren't uncomfortable, so that they could say their good-byes to their step sister without knowing the truth about Kent, they needed the time to say good bye, they didn't need anymore hurt or confusion so we hid, in out tiny room, and my heart beaked for them. I knew they wold be going thought hell, I knew they would be having the hardest time of their lives and I couldn't be there for them as, I had even more horrid news for their tiny hearts to hold, I wanted them to have time, before they heard it from me, I wanted them to digest and grieve for their step sister the way that they needed to without adding any more hurt. so we hid. 

It was so very hard for me, I was away from Kent as he was fighting his battle, I was helping Toby fight another battle, with his illness and his eating issues, I was trying so hard to hold it together, for us all. I was standing strong, as strong as I could, to keep it all together, but my heart was breaking and all I wanted to do was open that door and hold my babies and cry and cry a river of tears, I wanted so badly to smell them, to touch them and to be together as a family. but no  I couldn't do it to them. 

I needed to let them be, to be with their other family to grieve and be family for whatever time they had left. 

I have never felt so alone. locked in that room.  knowing that there was only a wall between me and my whole world, and Kent was still so far away, we were apart. so broken apart. 

The time that the oldest three where with their father was actually a blessing, looking back, as heartbreaking as it was. it allowed for Kent and I to grieve together, to try to understand what was going on in our lives, to try to piece back together some of those shards of what use to be our lives. things were going to be so very different. 

Somehow in the blizzard that was those few weeks we decided to sell our house, and to move in to my parents house, they have a large house and there was enough room for us to take over upstairs and still live a relatively separate life, for us to have our own space, yet to have the support of my family right there. We needed help, with so may appointments and so much going on in our minds, we needed someone to take over the hard stuff, the meaningless stuff, the financial side of things so that we could be together, family, to piece together our lives again, and when my father offered this up as an alternative, we jumped at it. Heavily in debt with car loans and a home loan we were only just making things meet with two incomes, and with Kent never going to be able to work again we really needed to reassess our lifestyle,  Ill be forever in debt to my parents, they jumped in and never thought twice about helping us, dad took over the hard stuff so I could concentrate on my Hubby, my Baby, My children, The Real things, the important things. He allowed me the time I needed to get myself together. we organised our move and with the help of our friends we packed up our house, our lives into boxes and said goodbye to the house that had so many of our great memories. 

We had so much help those few weeks,  from family, from friends and from the community. The real-estate even pitched in and sold our house without charge. Allowing us to get on top a bit.  to keep our heads just drifting above the water.  When I think back I will never forget just how much help we got. Friends became family and family rolled up their sleeves without thinking, without them all, we would have drowned. 

However at the same time, friends, close friends drifted away, I think they didn't know what to say, so they chose to not say anything, some vey close friends, or who I thought were very close friends, pulled back out of our lives, thinking I guess it was all too hard. I still grieve for those friendships but I guess that hard times really do show you who your true friends are, and although I can kind of understand why they found it all too hard, I just wanted a friend, never anything more, I never expected anything miraculous, I never wanted a councillor out of them,  just a coffee and a hug. To this day I am still disappointed in the loss of those friends. I loved them, I still do and I cant understand why it was too hard.  how hard can it be to hug a friend,  to say “It will all be ok”,  even if it won’t.  you just say what you need to say to get thought the day.  It will be ok.  We will be ok and sadly we will be ok without those friends.  I just wish they still wanted to be part of our lives, I miss them. 

Wow, how much has that blown your mind? and there is still so much more to add, still more sadness, much more happiness and many twists and turns to add to get you all up to date. and I am sure, many more to come as we head down this waterside of life, we cant stop, its too slippery, we just have to follow that path that is destined for us, we have to get wet, we have to scream for help, and we have to trust that there will be a nice pool of water, safety, at the end that we can splash into and be OK. we will be Ok, we just need to remember to love and laugh along the way.

Family life

This is to answer the comment added below asking about Larissa and how my relationship is going now,
Well I must say that it is rather complicated,  as we moved back to Somerset from Hobart Last year as soon as Toby was cleared from the Royal Hobart Hospital, we wanted to attempt to reunite our family,  however as Larissa is now 14 she can do what she likes in the eyes of the family court and has therefore decided to stay living with her father,  our relationship has been rather strained as a result of our move and the fact that we was unable to see her for such a long time and other factors that I really should not post about, but it is really hard as a mother to know that your daughter is struggling where she is living but not being able to do a thing about it,  she will not let me help her and keeps pushing me further away.  we only get to see her one weekend a month at her request and it hurts so much to watch her fall into the pattern that is becoming her life but not being able to help her. As her mum  I have offered her as much as I can, I have hopefully made it clear that I lover her and I will always be there for her no matter what and all I can really do now is hope and pray that one day she will take me up on that offer and allow me to be her mum again.

In December 2011 we had some huge family breakthroughs,  Toby came off his oxygen completely and so far has remained off!  YAY YAY YAY, such a milestone for us, we are so proud!    also we had a family trip to Western Australia to catch up with some family that we have not seen a lot of lately. we had so much fun that we didn't want to come home,  Aimee Anthony and Myself went swimming with the dolphins at Bunbury

and we got to stay for 7 days a Bunbury Ronald McDonald House Family Retreat! it was so beautiful,  next door to a wildlife park and not far from the beach, we went to the Busselton jetty,

although disappointed as they refused to cater for Toby in his chair, and the weather was horrid, the jetty walk was still beautiful, until we got washed out :) we also visited a few of the local towns and beaches and Australia's largest Free fun park/playground "Apple Fun Park"   we went for walks along the coastlines with high hopes of seing some whales,  unfortunately they too were not willing to show themselves for us but the coastlines were beautiful and the lighthouses fantastic,  the fly's....not so much.   We went underground into a beautiful cave formation, and had some lovely BBQ's with family.  We all fell in love with Bunbury and the long balmy evenings spent outside with a glass of wine or two and cant wait to go back.

without the Ronald Mac Family Retreat we would never had been able to have our holiday so for their accommodation and assistance we will be forever grateful.

While we were in Perth we Got to pick up Toby's Second Skin,  as special suit that we had arranged and had made custom to Toby's unique body and ability's the suit was very expensive and thanks to a lot of fundraising by the Country Music Association and a very special Lady, we were able to order this suit for Toby,

 The suit is like a whole body splint, it is made of special neoprene to draw sweat away from his body so he does not get too hot but to also move with the types of movements that we want him to be able to make and with special boning sewn in place to prevent excess movement in the areas we don't want. such as his Trunk & shoulders.  The Suit takes many hours of measuring of Toby and sewing everything just right for him all adding to the cost but when we finally picked it up WOW it is definitely worth it.  as you can see in the picture above... Toby has so much more support with the Suit on, he can actually sit up!  he still requires some hip support and can throw himself around a bit  but he has so much more overall body control in the suit that it is amazing.  he now wears the suit everyday under his clothes,  it is part of him,  like his ears, he gets up each morning and first thing his ears go on and his suit goes on so that he can start his day.  it helps with completing much of his physiotherapy tasks and very important.... it is saving mummy and daddy's backs, as he has more control, we can carry him, pick him up etc without straining as much as required without it on.  this suit is a godsend.   But like everything for special needs it comes with a huge price tag and it has a limited lifespan,  this will only last him around 12 to 18 months before he needs a new fitting.  and at the cost of several thousands of dollars we are already wondering where the next one will come from.



Also while in Perth we got to visit a water park and the kids had a ball spending hours running up the stair to the water slides only to slide all the way to the bottom again.    to tell you the truth mummy enjoyed it a little too, I cant tell you how much we all needed to be able to spend this time just relaxing with each other without appointments and medical needs and flights to Melbourne and the best thing of all was that we didn't have to do any of this with oxygen.

However.  one disappointment was on the way home.  we were to bard a Virgin Australia Flight at the Perth airport, and upon arrival to the airport, we were promptly told that they would not fly Toby with his car seat!   despite my calling and confirming this with their call centre at least 3 times prior to the flight. the airport manager told me that Toby would just have to sit in a normal seat!   again despite my informing her of his disability's and how that would be impossible.    In the end after over 45 minutes of arguing with her and coming very close to missing our flight we were permitted to fly with Toby as long as we were to nurse him on our laps.    Disgusted we will never be flying with them again! and I recommend to everyone who is flying with someone who has special needs to never fly with a budget airline  as I said, even the best laid plans and you may think that you have it sorted out with the airlines  but when you get to the gate it is always a different matter and no one is willing to assist you.    its a scary thought to think that you might not get home after a holiday to the the other side of the country.

The battle continues

After Toby had his first cochlear implant, it was the beginning of a whole new life for our family. we had so much to contend with, and so much to learn.  While Toby was beginning to understand the world around him he had fortnightly appointment in Melbourne for "mapping" (updating of the processor) as they start of with very minimal settings as you can imagine, if they all of a sudden put it on the highest setting it would be way too much information for Toby to process all at once. so It was turned up slowly. He also had speech therapy appointments at the cochlear clinic, to help us learn how to best help him understand what was going on and what all these new sounds meant.  We first started off with animals and transport sounds, as they apparently make up a large part of the English language, sounds such as, shhhh, Sssss, Mmmm, Oooo, Ahhhh, etc they also show us what sounds that Toby can hear and are sounds that we have to continue to practice with him ever single day to ensure that his CI's  (Cochlear Implants) are working.

 We had so many trips to Melbourne that the Rotary Club of Glenorchy helped us out by purchasing us a new car seat for him, especially for travel as taking his car seat in and out of the car all the time was rather difficult, He has to travel on the plane with a car seat so that he can actually "sit". and that in itself poses a problem.

The airlines will not allow him to sit on my knee as he is older that 2 years. however he is completely unable to sit in a normal plane seat.   so the airlines suggest they have a harness that he can use,  however the harness is not much better than a normal seat belt and does not support him in anyway,  "no way he can sit safely like that"  (remember he's like a rag-doll)  So we have to take a car seat, it is recommended by the airlines and approved for use by the airlines as long as it meets Australia standards,  however most airlines flying out of Tasmanian are regional routes and therefore they will not allow his car seat on the plane!  Regional Express are the only airlines on the coast that will transport Toby, otherwise Jetstar. That's it for Tasmania,  kind of limits our options doesn't it? so we fly with REX.
Toby loves to fly with REX, he knows how it all goes, he waits patiently for the hostess to bring him his chippies,  and if they take too long to get to him he can be heard yelling out to them from his seat. All of the hostesses and pilots that fly into Burnie Wynyard and the ground staff at both Melbourne and Wynyard now know Toby and welcome him on-board each flight.  we are usually greeted at Melbourne with a special car waiting to take us to the baggage claim, bypassing security so that we can get through easier with his oxygen.  Generally the staff are amazing, but for one unpleasant experience I had with the REX Melbourne Airport Manager after a flight that went wrong.   but that story is for another day.

We travelled two and fro to Melbourne for months, all the while going to Tobys normal physio appointments, Early Childhood Intervention lessons, Occupational therapy, appointments with his Teacher of the deaf and the Royal Institute for the Deaf and Blind also had weekly teleconferencing lessons. He had general medical appointments and follow up appointments with his neurologist and another sleep study to check his Oxygen requirements. Life is pretty hectic as you can imagine, between trying to fit all this in, plus find time for therapy at home, time for our other children, time for work and time for ourselves. (whats that?)
But Toby did amazing, he took it in his stride and slowly he learnt to understand the sounds.  I'll never forget the first time he showed us .... we was going for a stroll along the path at the beach, and we passed under a tree that had lots of parrots in it, they were being rather noisy with their chirping, and Toby looked up! amazing,  he actually heard the birds!  not only did he hear them but he knew where the sound was coming from, so he was beginning to master direction,  but then he surprised us again by making the sign for bird.
WOW,  we were blown away.  Times like that really make it all worth while, all the hard work and the long hours, the lack of sleep, really don't compare to sharing a moment like that.

Toby was booked in to have his second implant, his Left one. for November 2011, it was a little while later as he had infections in his left ear and they really needed to make sure that it was OK for him to have it done. one attempt seen him actually taken to theatre and all the prep surgery done, before the surgeon noticed that he had massive infection in his inner ear and they could not proceed.   That was so incredibly heartbreaking.  To watch him go through so much suffering post surgery and all for what seemed like nothing,  unlike the first OP he was in so much pain this time. he had had a lumber puncture at the same time at the request of his neurologist, as while he was already anaesthetised he wanted to check some tests for Toby's neurology. seemed simple enough, but Toby got a spinal headache, and screamed for hours, we were not sure if it was from the infection, after the Drs had played around in there or from the LP,  didn't matter it was enough to make us doubt our decision to go ahead with the 2nd Implant. However once we got back home and things settled down for Toby we realised just how far he had come and we really did want to give him the best, so we booked to try again,  November was a success!.

Also in November we were given the all clear from his last sleep study to trial Toby off his Night Time Oxygen. all his numbers were looking good finally and we were more than happy at the prospect of finally getting rid of the oxygen. We had a family holiday booked for December in Western Australia, and we really didn't want to take the oxygen with us, so we set that as our ultimate goal.  to be totally O2 free for our trip.   and guess what?....... He made it,  and without any major dramas. (Insert BIG smiles here)  this was a huge milestone for us all.  finally it was all starting to come together, and our baby boy was beginning to experience a whole new world.

It was also around this time that Toby got fitted for a special suit called a Second Skin.  I will go more into this in the next post. but it promises for many more exciting things to come.

He fly's so much he could be a pilot if he wanted!