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!