Post Number 48 - The End of 2015!

With Christmas now officially over, I breathe a big sigh of relief.  It was tough for us both as we flipped between the happiness of being together and doing fun things and the deep sadness and loss that we felt at the same time.  Grief is so strange that way, so bitter sweet.  You can feel so happy in that moment and be quickly overcome by huge waves of sadness.  The body and the mind so confused in what to feel.

The first week of the school holidays was busy with many activities and preparations for Christmas.  We took each day generally relaxed and did not push hard to complete any tasks. "Be kind to yourself", were the words last spoken by my grief counsellor, and I did my best to do this.  Our general routines for the lead up to Christmas included buying a present for a "Wishing Tree", sending Christmas cards, baking and constructing a Gingerbread House and baking assorted biscuits as gifts for friends and the residents of Trinity Place, the retirement village that my Mum lives at.  As the days flitted away, and the weather hot and unbearable, it was becoming clear that many of these tasks would not be happening this year.  But I did not stress and simply did what I could on each day.  Other tasks began to pile up too, such as ironing, housework, answering emails and general housekeeping, but again, the voice of being kind to myself stayed strong.

Many days I struggled to even function.  My general motion sluggish and without its normal purposeful movement.  With only days to go before Christmas, I decided we would go to Ikea so I could purchase some smaller shelves for my kitchen, a long on-going renovation project I had begun six months ago, Sebastian could have a play in the "ball-pit" and we could have lunch before heading home.  After finding everything I wanted, we headed for the food section of Ikea to see if we could find a Gingerbread Kit.  I figured this would be better than nothing at all, but they had sold out.  But they did have gingerbread Xmas trees, frozen gingerbread dough and pre-pressed, cooked biscuits that just needed decorating.  We loaded up with goodies and headed home to work on our creations.  The mood good, I put on some festive music and we worked on our creations all afternoon.  That night I bagged them all up, ready for Sebastian to hand out the following day to the residents of the retirement village.

Christmas cards were also completed as was the Wishing Tree gift.  I wrote our usual summary letter, printed all the labels and recruited Sebastian to help to address, stamp and write his name on over 40 cards.  This was a task that was always shared by Mark and myself, but I was determined to complete them, although I did not have the emotional or physical strength, I pushed myself and Sebastian to ensure it was done.

I was also thrilled to hear from one of my friends who was about to leave Adelaide to move to Canberra.  She offered to take Sebastian present shopping.  It was an extremely hot day and we had attended a BBQ at one of Mark's favourite employers, so time was against us, but she insisted on taking him amongst the shopping chaos, putting her own personal needs to one side, to help us out this one last time before leaving.  She was amazed at how quickly Sebastian found the perfect gifts for Mummy.  He was confident and happy and excited about giving his Mum a gift she knew nothing about.  I had also purchased a few gifts for myself, hoping that my Mum would wrap them with Sebastian one evening when I went out.  But wrapping was not her strength, so again, one of my neighbours jumped in to teach Sebastian how to wrap presents like a professional. 

I also worked on creating a memory wall of Mark.  Eight photos of various sizes displaying his ever glowing smile and contentment in life.  I was desperate to hang these and again needed to ask for help to ensure they were lined up and looking the best that they could.  By Christmas Eve, it was all done and I was amazed that I had managed to get it all together without stress and frustration.  It was now time to create new traditions, new ways of celebrating Christmas without Mark, yet still honouring him.

Christmas Eve was usually a German family affair.  We would go to Church, have a German dinner, listen to German music, speak to family in Germany and open one present.  But I could not bear Church or anything religious.  Just listening to prayers and bible readings while at the retirement village, brought on a flood of tears.  Carols having the same effect, this was just not going to be an option for me.  So Mum decided to stay home so she could attend church and Sebastian and I enjoyed a dinner for two which still included a German sausage, a German herring salad and some fresh prawns.  After dinner, we put on our bathers and headed for the beach, armed with six red balloons, filled with helium and with two very special and very personal letters addressed to a special man who we love so dearly and who lives amongst the clouds.

We walked along our beach, the beach we had visited as a family for years, until we found an unpopulated spot.  We sat at the waters' edge and released our airmail letters.  The sky was blue with white fluffy clouds and we held each other close as we watched them rise higher and higher in the sky.  I held my breath in fear that they would not rise up into the sky, but instead burst and plummet to the ground.  But after seemingly sitting in one spot for several minutes, they rose high into the sky, until they were nothing but a spec against the white cloud.  We sobbed as we watched and then, they just disappeared into the cloud.  "Dad's got them", Sebastian said, and I nodded as I hugged him tighter than ever.

We sat at that water's edge for another hour, just talking and playing in the sand.  By the time we left, we had constructed a big lake, with European mountains and channels for the water to flow in and drain out.  It was such a special evening, full of purpose, pain, tenderness and love. 

Christmas Day was a busy one as I had invited some of our dearest friends to call in for our traditional morning Eggnog and Nibbles.  The children played and laughed together, while the adults chatted.  The afternoon filled with preparing a roast lunch for us plus Mum and her friend Herbert.  It was a big day but a great day filled with love and laughter and lovely food and drink.  By 5.30pm, the seniors were ready to go home and I was shattered.  With Sebastian in bed, I curled up on the lounge and sobbed and sobbed, overwhelmed with the amount I had achieved and emotion associated with it all.  It felt so strange.  I should be proud of what I had achieved and yet I was so overwhelmed with the sadness that I had to do it all alone.  Mark and I always did everything as a team.  We talked things through, planned, delegated and executed together.  Now I had no one to talk things through with and I realised that this was such a huge hole in my life. 

Weeks prior I had worked tirelessly on cleaning up thousands of photographs and videos, filing digital data away in their correct location.  I had not realised that things had become so out of hand and while I'm sure Mark did know this, I can only assume it overwhelmed him also and he most likely didn't want to bother me about it while I was so absorbed in my study.  I spent three solid days getting all this data into its rightful place, only to find days later, that this data had somehow disappeared.  My data had shrunk from 150gb to a mere 14gb.  This pushed me to a point of pure panic and desperation.  I put out a call for help, but little help came.  I investigated and researched and understood what had occurred, but was helpless in finding an answer to resolve it.  After four days of high stress and unable to remain calm about this situation, I finally spoke to an old friend of mine.  We talked calmly for around 20 minutes and I was reminded just how long we had been friends.  To this day, he remains the only person who understood what I was talking about and although he did not have a solution, we talked things through and he calmed me down and we discussed a possible recovery plan.  THIS is the thing I miss.  Someone who understands IT to the level that I do, and someone who can just talk things through with me.  I didn't need to have all the answers, just wanted to bounce ideas, brainstorm, talk it through.

Being a widow is lonely, more than I can even describe.  And I enjoy my own company, very much.  I don't need constant stimulation or company.  I enjoy the quiet, the time to think, the time to write, read and be creative.  But boy, do I miss just having someone to talk things through.  I don't need answers or "knights in shining armour", just someone who understands.  This hole is so big and I am doing my best to learn how to live with this emptiness as it will never be filled.  Sebastian brings me love and so much joy, but there are things that only Mark could ever bring in to my life.  Friends do what they can, but everyone has their own families and their own set of life problems that they must deal with and I must now face a new year with more self-assured strength than ever before.  The only person I can really rely on is me.  I have been given this life and I must move forward and live it the best way that I can, through the pain, the void and the emptiness.  Push through and keep doing the things that can make a difference in this world while continuing to raise Sebastian with the same passion and purpose.  Teaching him life lessons such as the gift of giving over the gift of receiving, one of this years' proudest moments.  To see how much he enjoyed giving his labour of love of decorated biscuits to the elderly residents, and to see him on Christmas morning, completely ignoring the presents from Santa, so that he could bring me his very special gift that he himself had chosen and bought, some of the proudest moments of my parenting life.

So tomorrow marks the last day of 2015 and I'm sure it will be another bitter-sweet moment as we again visit our family beach and continue our tradition of dinner at the beach, followed by playing in the sand, glow sticks and watching the 9.30pm fireworks.  This doesn't need to change and we are both looking forward to yet another day of being together, having fun and talking about Dad.

Post Number 47 - Christmas is Looming

School is out and the Summer School Holidays are officially ON! I thought I would be excited and in some respects I am looking forward to spending some quality time with Sebastian.  We have plans to go on bike rides, spend time at the beach, have a PJ day, go to the movies, do paper craft and most importantly, play Skylanders.  Yes, much has been talked about and yet a dark cloud hangs over our heads.

With this week being the last week of school, I decided to take Sebastian to see Father Christmas as we have always done in the past. My secret to long queues and avoiding craziness...go before the school holidays begin and go at the end of the day.  So I took Seb out of school a little early, stopped in to my solicitors in the city to sign some paperwork, and headed in to the Myer Santa-land in Rundle Mall.  Just as in previous years, no line-up, no chaos, no stress.

But things just felt off.  The Santa just not up to scratch.  His beard constantly moving around and things not flowing as well as they usually did.  Photos were taken of Sebastian and then I also jumped in for a shot.  In previous years our favourite photos where always the family shot, but this year, the photo of me, Sebastian and Santa just looked ridiculous, unbalanced and incomplete.  I chose the two photos of Sebastian to buy and as he travelled around the train tracks on the free train ride, most likely for the last time, I silently sobbed. 

We headed home in silence and continued our evening as normal.  But as each day passed, I became more and more sensitive, shedding tears easily.  I spent days and days working through thousands of photographs and video memories, collecting the very best of Mark, in a plan to create a movie of his life and who he was as a person. 

The following day my car was in for service, so I took the opportunity to walk over to a nearby shopping centre to do a little Christmas shopping.  As I had already bought most of Sebastian's presents, the plan was more to have a coffee and a little browse.  But things did not go to plan.  I picked up a few little items, then more and more.  I left the shop, had the coffee, checked in with the car repairer who told me there was still more than an hour to wait, so I returned to the shops and continued to purchase more items for friends and for Sebastian.  In the end, there was so much stuff, I was unable to carry it all and needed to beg the store to hold the shopping trolley full of items while I collected the car!

Once all the items where safely stowed in the boot of the car, I sobbed again.  I was so upset that I had purchased so many items, mainly for Sebastian.  Voices in my head arguing about how much I had spent, my Mum's voice saying, "How could you?" and my own voice saying "But he just lost his Dad, he deserves to be spoilt."  Never have I felt so conflicted, as Mark and I always made a point to not overspend and ensure Sebastian understood the value of money and that he would not get everything he asked for, because life just isn't like that.  But he has just lost his Dad! Am I buying him off?  Am I buying out of guilt?  I don't think so.  I'm just so bloody proud of him and how amazing he is, I can't help but want to buy him the world.  So let my mother disapprove, for this year, I don't care.  He has shown amazing courage and strength and he deserves every gift.  I'm even sure that Mark won't mind, so long as I don't make a habit of it.  This year has been the toughest yet and we all deserve a little spoiling for the sacrifices we made and the loss we continue to experience.  It's ok and we will be ok.

These past few weeks I have been very busy preparing the garden for the heat of summer that is likely to be another record breaker.  I surprised even myself at my abilities to get the garden cleaned up, trimmed and even installed several new watering systems to make watering as simple as turning on a tap.  As I completed some of the larger tasks, I took a step back to admire my work, and for a few seconds I patted myself on the back and said "Well done old girl.  You have done a marvellous job and this is going to work a treat." That was quickly followed by a wave of sadness and more sobbing tears as my gardening partner was not there to share in this glory or to share in the celebratory cup of tea or glass of wine for a job well done.  Yes, it's true, I am a very capable woman, but this doesn't lighten the grief load at all, and the closer we get to Christmas, the harder I feel it will become.

I have joined a young widow's support group and Sebastian and I have attended separate grief counselling sessions.  These things help in their own special ways.  A chance to be listened to and heard, a change to meet others who feel the same pain, a chance to just be as you are without judgement; a small step in the very long road that is the journey of grief.  One day at a time, one meditation at a time, one event at a time.

Last week I had the privilege to "spend an evening with Oprah".  She was truly amazing as she spoke non-stop for two hours and told the story of her life, her successes and her failures, her difficult times and those to celebrate.  Her words confirmed that I was living my best life and I felt proud in myself and how far I have come as a person in my journey of self-discovery.  It wasn't until the very end when she said, "the things in life that bring us down, the times of sadness, of deep loss, of health challenges and pain. It is these things that make us stronger and stronger and stronger and stronger..."  By the fourth "stronger" I was sobbing like a baby.  I understood completely and I sobbed for her, for me, for Sebastian and for everyone who understands true pain and true loss and yes, it does make us stronger and perhaps more determined to go on and make our lives mean something.

Post Number 46 - Ashes to Ashes

Weeks are flying by and Sebastian and I are "getting on with things" and to our surprise, we are coping reasonably well.  Of course we butt heads on occasion and have our moments when we "just need a hug for no reason", but we are there for each other and that is all that seems to matter.

I studied hard and completed my final exam for the year and can now breathe a sigh of relief, relax and enjoy myself until classes start again next March.  As it turned out, many people in Mark's home town of Mt Gambier had not heard of his passing or where not able to attend the funeral and this pained the family who had to continually explain that Mark had left us.

Although we had never discussed it, I always knew that Mark would want to be buried in Mt Gambier near his beloved Mum, so arrangements were made to make this happen, along with a "wake" for the family and friends in Mt Gambier to allow them to rally around and share their grief and their support for the Thompson family.  With my exams over, my first port of call was to register the "old girl" and get her ready for a road-trip.  I drove her around town for a few days to get the feel of her and make sure she was ready for the drive to the South East.  From the minute I started driving her around, I started to feel Mark's presence again.  I felt oddly calm when driving her, something I never usually felt as she can be quite awkward to handle and get in and out of.

Wednesday morning Sebastian and I loaded up the car, finished watering the garden and headed south.  Poor Sebastian, squashed into the back, the new racing seats looking smart, but totally impractical for anyone in the backseat.  But he assured me that he would be fine and off we went.

We stopped several times to allow our legs to unfold and uncramp, with our final destination being Naracoorte.  I wanted this experience to be a little mini holiday, a chance for us to have a bit of fun together and not have it just about burying his father's ashes.  Mark and I had talked about showing Sebastian the caves many times, but never actually got around to it, so now seemed the perfect time.  I felt Mark's presence the entire time, especially when driving his car.  The feeling was so strong, that at times my emotion became uncontrollable.  I was neither sad nor happy, but feeling his warmth was just a strong reminder of what I was missing.

We checked in to the caravan park and explored all there was to see and do including the large swimming lake, bouncing pillow, table tennis and video games.  The following day we explored caves, including those inhabited by an endangered species of bats.  Our day full of fun and adventure, our evening full of hugs and a restful sleep.




On Friday we drove on to Mt Gambier and after a much needed coffee, we met the family to bury Mark's ashes, right next to his Mum.  Nothing much was said and we all placed a spadeful of dirt into the hole and paid our last respects.  Hours later we all met again at the wake, where people poured in to show their support and love for the Thompson family and also for me.  I found this experience most unexpected and I spoke with many aunties, uncles and cousins.  Some shared their own stories of grief and current difficult times and my heart went out to those doing it tough and in carer roles.  I wanted to stay and chat to everyone in the room, but there were just too many people to cover in three hours.  Sebastian also seemed to have a good time, checking in with me every now and again, but most of his time was spent meeting relatives and playing with another same aged child who arrived after school.

Exhausted after a big three days, we headed back to the hotel for a swim in the "indoor heated pool" which turned out to be not-so-heated.  But we made the most of it and enjoyed it just the same.  Too tired to go out for dinner, we decided to eat any last bits of snack food we had brought along, as well as a few items from the mini-bar, while sitting in bed together watching a movie.  Everything had gone so perfectly and I couldn't be more content at that moment.  Sebastian and I just love each other's company so very much and we have a mutual respect for each other, similar to the respect Mark and I had for each other.  He is my "Mini-Mark" and my whole world and I know Mark would be approving of everything I am doing.  Sebastian often comes home from school telling me about all the gifts Daddy gave him that day.  One day recently, Daddy gave him three butterflies, four feathers and two rainbow lorikeets! So convinced is he, that every butterfly has come from Dad, he has me believing it too! 

Before we left to head to the South East, I was having problems with our aquaponics system.  It's a simple filtration system of water from our fish pond pumping up into a tray full of plants which then returns the cleaned water back into the fishpond.  I was having all manner of difficulties getting the water to drain back into the pond, nearly losing the fish several times through lack of water in the pond.  During my process of trying to sort this problem out, a white butterfly continually fluttered around, almost watching what I was doing.  I became so frustrated, I looked at this butterfly and said "well don't just flutter around, give me some idea what to do here".  A moment later, I looked up and it was gone - "maybe my tone a little too harsh", I thought.

I don't think it matters what we believe, if it helps us get through the day and it's not hurting anyone, then why not.  We continue to be grateful every day and in general, keep a happy and contented lifestyle, but Christmas is just around the corner, and this is not a time that I am looking forward to.  It's a time of year I have always struggled with.  The constant message of "family" pains me to the core.  With my own family on the other side of the world, I have always felt emotional and alone.  It's not a feeling I have ever been able to shake and this year is deemed to be harder than ever.  But I plan to fill my house with as many friends, family and neighbours as I can possibly muster and hopefully this will get me through another difficult time.

Post Number 45 - Life is full of Blessings

There is no doubt that grief is an "ugly beast" and can easily consume you and make you believe life is not worth living.  Not a day goes past where I don't shed a tear, but the feeling deep inside myself is different these days.

I returned to my studies, sat for a microbiology exam and completed my pharmacology lectures.  I never missed a lecture or missed handing in an assignment.  Luckily, with the load of only two subjects, it was manageable.  Routine and study keep me going, along with Sebastian's happy and loving arms.  Then something profound happened.  I started thinking about all the gifts that Mark had brought into my life.  Not material gifts, but those life-changing things that cannot be purchased from a store.

I did everything I could to save his life and I have no regrets about anything I did, as I honoured his wishes completely.  I owed him at least that, as he saved my life many years ago.

In 2005 I resigned as director of the small IT business we had both co-established.  I had been living a high stress lifestyle for many years, I was very overweight and I had abused my body continuously with alcohol, stress, lack of sleep and cigarettes.  I had very little self-worth and very little self-control.  Mark and I had worked together since 1998, first at Bridgestone and later in the small business, Computer Image.  We had become very close friends, especially through the years of building the small business and we loved working together and we experienced a mutual respect for each other.  I respected him for his "genius-ness" and he respected me for my abilities as a manager and mentor.  We were polar opposites in many ways.  He was shy and quiet, book smart and a geek, yet witty and kind.  I was firm but fair, street smart, convincing and persuasive, misunderstood but generally "got my way"!  Together, in the world of computers, we were a force to be reckoned with and we made the "impossible" happen all the time.  We did "miracles" too, but they just took a little longer!

Soon after I left the business, Mark and I decided to buy a house together.  I wanted an art studio and he wanted to purchase his first bit of real estate.  By combining our resources, we were able to purchase a beautiful home, large enough for the two of us to live independently.  Our large windows displayed beautiful views and the huge gumtrees filled with all kinds of bird life, gave the feel of the country.  We were both so happy we could burst. 

Together we cooked, laughed and started an exercise routine.  When I would say, "I'm too tired to cook", he would answer with, "I'll give you a hand".  Past relationships would have answered with, "Let's get takeaway" which was one of the main reasons for my excessive weight gain.  Whenever I didn't feel like exercising or doing yoga, he would gently encourage me to get off the couch.  Together, we lost weight and we started enjoying life to the fullest with weekend hiking and a friendly hit of tennis.  The house needed much TLC and together we fixed and painted, replaced and upgraded our little piece of paradise, always admiring our work and the skills we acquired through the DIY process. 

It wasn't long before we became "friends with benefits" and Mark decided to resign from his stable income job, to seek a career in his love of computer programming.  He studied hard and passed the Microsoft exams to gain his certification.  It was a true "leap of faith" and I felt so proud of his drive to do this, especially now that he had a mortgage to pay.

I dabbled in various jobs and lines of work, but my real desire was to have a child.  All my adult life I had never wanted a child of my own and I was never the one drooling over cute little babies.  I was now in my 40s and I couldn't believe this obsessive maternal need.  Mark supported me in every way and eventually we used IVF to conceive.  It took only two attempts, a long nine months wait and then our bundle of joy arrived.  I knew he would be special and he has proven that over and over. 

Yes, Mark gave me many gifts.  He showed me what true love really feels like, he respected and loved me with every inch of himself.  He helped me to believe in myself and live with a cause.  Through him I realised that I am "worth it" and I have purpose and how I treat my body matters. Together we learnt meditation and grew spiritually through reading books and sharing our inner most thoughts and feelings.  Because of him, I am the strong and sometime wise person I am today.  I respect and care for myself and I no longer judge myself by the words of others.  I meditate when I need to, give gratitude every day for blessings of the day and teach Sebastian to do the same.  I have so much to be thankful for and I have chosen to live in this state of gratitude rather than a state of self-pity.  Some days are more challenging than others, but when I really take a good hard look at my life, I realise just how very blessed I am.

Today I listened to a song that I love so very much and it reminds me of Mark.  If I may be so bold to borrow the words from the stage musical production of "Wicked", "Because I knew You (Mark), I have been changed for good".  It couldn't explain better how I feel about this wonderful man and how he has changed me for the better.

I've heard it said
That people come into our lives, for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well.. I don't know if I believe that's true
But I know I'm who I am today
Because I knew you...

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But, because I knew you
I have been changed for good...

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?

I do believe I have been changed for the better
Because I knew you
I have been changed....for good.

Post Number 44 - Two Weeks On

It's only been two weeks, yet the funeral seems like it was months ago.  With still the second week of the school holidays to go, Sebastian and I made up for much lost time and much needed time together.  The last six weeks had taken a toll on us both and we were both so relieved we could just be together without any other commitments. 

 
We spent as much time as we could together, cooking, pitching a tent on the back lawn and camping out, playing Sky Landers, playing mini-golf, going to the beach and lots and lots of hugging.  Sebastian also slept in my bed, as did Else and we all felt safe and content together.  It was such a novelty, but soon I noticed that I just didn't feel any joy or passion in anything we did.  I didn't care if I got a hole in one or if my food tasted ok.  Nothing really mattered anymore- I was just keeping busy and trying to make life as fun and enjoyable as I could for Sebastian.  Life was never going to be the same for us again, no matter how much I filled it with activities.

Soon it was Monday again and time for Sebastian to go back to school.  I was a little sad he would be leaving me, yet I desperately needed to get back on top of my studies, so I was happy to get that opportunity, especially with assignments due and exams just around the corner. Sebastian also had mixed emotions.  He wanted desperately to see his school friends, in particular his best friend, a girl two years older than him who had been his friend since the beginning of the year.  He had so very much to tell her, he explained to me, but he was also concerned about crying in front of the other children.

Once at school I spoke to his teacher and to my surprise, I was unable to hold back emotion.  This felt rather uncomfortable because Sebastian and I had not really shed huge amounts of tears since Mark had passed, even though we had talked about him a lot and felt the sadness, we never really broke down.  I pulled myself together, hugged Sebastian and headed for the school office to advise them of what had happened.  I spoke with administration staff without a problem, but when the school principal took me into his office I lost the plot again.  We talked about possible assistance for Sebastian and ways to help him to get through the rest of the year.

That afternoon I picked Sebastian up from school and he seemed fine, that was until he got into the car.  He sobbed and sobbed, hardly able to breathe.  This was breaking my heart as I tried to work out what had gone wrong.  I quickly drove him home and on the way he managed to tell me that his best friend had gone off to play with other girls at both recess and lunch and he never had an opportunity to talk with her and it seemed she didn't want to talk with him.  His world had just collapsed.  If losing his father wasn't enough, now he lost the one friend he felt he could really confide in.

The next day I spoke with a few support people at the school and they immediately jumped into action.  By the time the final school bell rang, Sebastian had his best friend's ear again and a new "circle of friends" group had been established to provide support and friendship for Sebastian.  He glowed when I picked him up and I was relieved to know that things had turned around for him when he was in such a fragile state.

Meanwhile I have been getting on with my studies, attending class and working on assignments and making important phone calls to figure out my next move in sorting out all of Mark's affairs and how we were going to move forward financially.  Keeping busy certainly helps, and when things are going well and falling in to place, I feel ok.  But as soon as things don't go well, I very easily lose control of my emotions and feel the aching loss.  I hate feeling it so very much because the pain is unbearable. I don't feel Mark's presence anymore and it still seems too unreal to be true.  Nothing makes sense anymore.  Even though I was present for his last breath, I saw him lying in his coffin and I delivered his eulogy, it still feels like a bad dream.  Even making myself write this blog has been extremely difficult.  Getting out of bed these days is harder than ever.  I thought it was hard before, but now it seems impossible.  If it were not for my Sebastian, I would stay there, without a doubt.

So I guess this is what they call "grief" and I can tell you, it sucks.  There is such an emptiness, a void, the uncertainty of the future.  Will I have to sell and move?  Can I maintain such a big property? Will I need to get a job and would anyone hire me anyway?  Do I even care about my studies anymore? Will I get an opportunity to take Seb on a road-trip and is that even the right thing to do so close to Christmas? How will I get around the bank freezing all our accounts when they find out he has passed? I just don't know and quite frankly, not even sure I care. 

My body feels weak and my spirit matches that weakness.  I have been told countless times that I am a strong woman and maybe that is what gets me through the day.  But when I realise that I will never be able to discuss my thoughts, my feelings, my passions with Mark ever again, my world crumbles and I am a mess. I wish I could still feel him, feel his guidance, feel his love and admiration, but I don't and that is the worst feeling.  So I continue to take one day at a time and try to fill my diary with catch-ups with friends and busy up my life as much as I can.  I have arranged for grief counselling for us both in the hope that we both find some peace and a way to release the pain we both feel, but I don't think anything will ever fill the void or ease the pain.  I can only hope that one day, I feel my passion return and give me and our life purpose again.

Post Number 43 - A Perfect Tribute to a Beautiful Man

Today I officially said goodbye to the love of my life.  After only two days of preparation, I'm still smiling at how everything just fell in to place. The thought of waiting until next Tuesday due to a public holiday was agonising for me and as I know that I work at my best when under pressure, I felt compelled to have his special day sooner rather than later.  Strangely though, I never felt stressed or overwhelmed or unsure if I could pull it off.

On Wednesday morning I asked Sebastian to give me a cuddle in bed.  He moaned and complained as he was on a mission to review his latest Skylander poster and I had stopped him from doing this.  But I had important news that I had to tell him and I couldn't think of a better place than to cuddle up in bed with a box of tissues to tell him his father had passed away.  To my surprise, or maybe I wasn't that surprised, he just fell silent. A few tears fell, but not the outpouring that I was expecting.  We cuddled for a while and I explained that I would be really busy for the next few days getting everything ready for the funeral, but that we would be able to have some quality time very soon.

After breakfast I decided we could both really use a walk in the fresh air and warming sunshine.  We delivered the previous night's blog post to the neighbours and friends who don't have computers, walked past Seb's old Kindy and on to our favourite café for a coffee and to meet my Mum.  The walk was just what we both needed-a chance to slow down and talk.  Sebastian asked many intelligent questions like "will Daddy go in a hole in the ground" and "will I be able to see him one last time" and "will we still be able to send him rainbows with our love".  It was truly a beautiful morning and Sebastian displayed an incredible maturity and I could see that I had prepared him well for this moment.

Once home, Sebastian went to the neighbours to play with his adopted "Big Brothers" while I started making phone calls.  Before long I had many things on the go and while I was a little nervous about what I still had to put together, I felt ok.  Sebastian came home and played his new Skylanders Trap Team game which I had been struggling to get running properly.  But with the help of his big brothers, he was off and racing, trapping villains and having new adventures, while I talked with the funeral director and worked through what still needed to be done.  That evening as Sebastian slept soundly in my bed, I was also visited by another friend who helped me write the main eulogy.  Ironic when I usually have no difficulty writing, but I just sat gazing at a white screen, not knowing where to start.  I needed this eulogy to be about Mark and who he was as a person and not about me and how I was feeling.

The following day flowed just as well.  My friend took Sebastian to the Blackwood Library to see a magic show and register Mark's car for a day, while I continued work on eulogies, photos and organising to have Mark's car cleaned, polished, and most importantly, reconnected and started again after sitting idle since February.  But I had another goal that I felt I needed to do.  It seemed a little selfish, but the thought of standing in front of a hundred people, looking the way I did, brought me to tears.  I had not seen a hairdresser since February and my hair was long, had no style, lifeless and very very grey.  I just couldn't face anyone looking like I did and so another friend organised an appointment for me to help me to look my best-not just to give me the confidence, but so I could look good for Mark.

All morning I felt calm and warm.  Driving to an unfamiliar place to have the hair appointment, I still felt unusually calm and even though I left home late, I arrived ten minutes early.  The hairdresser cut off enough hair to make a wig and then applied the colour.  While waiting for the colour to set, I sat wondering who I could ask to stand with me to read my eulogy.  While I had many friends who have been wonderful angels, I wasn't sure any of them would be able to stand up there with me and not fall apart.  I only needed to see one person cry and the floodgates would open for me too.  As I looked at my phone, the contact tiles flipped over and the face of an old friend appeared.  "Of course" I said aloud and I walked outside into a sterile outdoor courtyard, smaller than my kitchen.  It was paved around the outside with the smallest patch of grass I had ever seen and a big high fence.  There were no trees in sight anywhere, not even at the neighbours, only a few screening plants to high the ugly fence. 

I rang my friend and asked if she felt she could be my rock, hold my hand and give me strength.  "Of course I can do that", she replied and I took a deep breath of relief to know that she would once again help me, just as she had done weeks before at the rehab meeting at the hospital.  After our discussion about the funeral, she began telling me a story, but I had to cut her off quite abruptly, as I couldn't believe what was happening in front of me.  I white feather floated down, right in front of me and seemingly from nowhere.  I asked the hairdresser if she regularly found feathers in her yard and she replied, "no? never, what do you mean?"  Tears flooded my eyes and my chest grew warm again.  I cried happy tears in the knowledge that my wonderful man had his angel wings and he was letting me know he was there, and he clearly approved of my plans.

My need to look decent took a massive chunk out of the day and once on my way home, I realised I was fast running out of time to get the photos and music together in time.  I also needed to get Sebastian a new T-Shirt to match his shirt so I raced in to Target.  Before getting out of the car however, I said to Mark, "well, I don't know what abilities you have as an Angel, but I really need a nice t-shirt for Seb, but I really don't have the time to get it, hope you can help me out."  I ran through the shopping centre and straight to the boys wear section and found a nice plain dark blue t-shirt straight away and while this was exactly what I was looking for, I thought I would just have a quick look to see if there was anything else that would be appropriate.  I didn't need to look far and there it was.  A dark grey t-shirt that said in big bold letters "My Dad Rocks"!

Back home and I was really under the pump.  I contacted the RAA while driving back from the hairdressers and the car groomer was also due to arrive any minute as well as Mark's family.  It all happened at once as well as receiving a phone call from the funeral director to ask if I was happy with what he had written.  I did have some concerns with some of the wording he used and while I was trying to explain why I needed him to change them, he was explaining why he needed to leave them in and at the same time I am directing the RAA to the shed to grab the battery and point the car groomer to the nearest tap and power point.  Talk about multitasking on steroids!!

By now I had about an hour to finish selecting just 40 photographs and choosing the right music to make the presentation complete.  I still don't really know how we did it, but I know it was a team effort and somehow it all got done and I delivered the USB stick just in time.

That evening, the house fell silent and I made the finishing touches to the eulogy, but I still couldn't read it without tears, but there was nothing more I could do now, time to rest and get as much sleep as I could, knowing that tomorrow was an important day and that I needed sleep if I was going to do well.

So today was the big day and while Sebastian tossed and turned throughout the night, we seemed to get a reasonable sleep.  We showered, had breakfast and made preparations to leave the house to get coffee and a few essential groceries.  Sebastian had a cooking class to attend and as he was so keen to go, I drove him there and organised for yet another friend to pick him up and bring him to the funeral.  Once home again, I packed away my groceries and paced up and down, not knowing what to do with myself.  Texting my neighbour, she suggested I do a meditation, something I had avoided for many many months.  It was the perfect suggestion and I headed out to Mark's man cave, put on a nature sound CD, sat down and closed my eyes.  The tears came almost immediately, but they were gentle tears as I felt his presence yet again.  "Stay with me a while" I asked him.  "Give me strength today".  It was truly a wonderful meditation and I then picked up the eulogy and read it out loud, without a stumble or a tear.  I took a deep breath and smiled in the knowledge that I could it.  I dressed, gathered all my things and started up the "red rocket" or the "old girl" as I affectionately call her.  I was early, but I didn't care.  I stopped for some fresh petrol and drove her to the funeral. She coughed and spluttered when I put my foot down, but otherwise, she travelled well. 

Before long, people started filling the auditorium and I took Sebastian in so he could see his Dad one last time.  My Mum was horrified at the thought, but it was his decision and it was what he wanted to do.  We took in special things and placed them in the coffin, took a moment to hug and shed a tear and then we were ready to start.  The room filled, the music played and the service began.  The first eulogy presented by a friend of Marks of 25 years.  He shared memories of younger years which warmed my heart.  Then it was my turn and with my friend by my side, I delivered my speech almost perfectly, never looking at the sea of people, in case I caught the sight of someone crying.  Then others stood up and when I heard the neighbours' children speak their own words of how many wonderful memories they had of Mark when they were younger and how much they would miss him, my heart just overflowed.  Then another fun story of day at the racetrack and some fun was had with the car and some dirt, a story I had never been told, a little secret Mark may have kept perhaps.  But it made me smile so much my face hurt as I pictured him turning the wheel, pulling up the handbrake and planting his foot on the accelerator.  I never felt he did that enough, but maybe he did, and I just didn't know about it!

More stories and laughs and beautiful tributes to a man truly loved by all.  It was perfect in every way and I felt so proud and so happy that I could do this one final thing for him.  I know he was happy.  I glowed as I hugged and talked to as many people as I could, even people I did not know and even people I had previously taken a dislike to.  But when stories were shared about the early days in Uni, stories I had never heard and stories of such respect and awe of Mark's abilities, I soon understood more about these friendships and I know Mark was happy that I had made a menze.

While I know there was much sadness and tears today, my memory is of all the great stories shared today and the love and respect that everyone has for Mark.  I can't stop smiling because I was the one he chose to marry.  I was the one he waited for.  I was the one who had the privilege of creating a beautiful child with him.  I am such a better person for having him in my life and while I will miss him every single day, he hasn't left me yet.  He is still here with me, and for that reason, I don't feel the loss.  Every day I look at Sebastian and I see him and I feel him.  Sebastian and I have cried a river and I'm sure we will cry some more, but at last we can breathe.  The up and down rollercoaster of emotions is over.  The rushing backwards and forwards to the hospital and home and school is over.  The cutting myself into two people and trying to be there for them both is over.  It's just me and Sebastian now, with Mark's spirit guiding us every step of the way.  I can't be sad, I have everything to be happy and grateful for.  With the support and love of so many people, how can we be anything but ok?

Post Number 42 - Rest in Peace My Love

Today is a very sad day.  Because tonight, I said goodbye to the love of my life. Mark was more than a husband to me.  He was my work colleague, my best friend, my secret lover, my husband and the father of my amazing son.  He leaves this world a better place for his contribution.  Many of his colleagues looked up to him and often asked his advice.  Many people had the privilege of meeting him and although he never knew it, he often left a lasting impression.  He was a quiet man, yet was as opinionated as me, just not as vocal about it, only to me.

I don't know why he chose today to leave - perhaps he did not have a choice.  Perhaps he didn't want to be a burden.  This morning while in his room I made all the final preparations to bring him home.  Hospital bed, linen, removalist and storage to make room for all the equipment, nursing staff and support staff to help me to care for Mark at home.  I was all ready for him to be home by Friday afternoon.  Sebastian and I went out for dinner, almost to celebrate that all would be well and we wouldn't need to make constant trips back and forth to Daw House and the man we loved so much would be home where he belonged.  But it was not to be...

At 6pm while we sat at our favourite café awaiting our order, I received a phone call from Daw House.  I had only left there an hour ago, so thought this quite strange.  I was advised that Mark's condition had seriously changed and his pulse was racing and his breathing was laboured.  They had administered some medications to settle him down, but thought it was best I was informed.  While deeply concerned about the news, I didn't panic.  In fact, I felt quite calm.  I contacted my neighbours, or should I now call them my family, and asked yet again if they could rescue me and of course, they came in my time of need. 

Sebastian and I thoroughly enjoyed our dinner as well as our tiramisu (tiramisuka as Seb calls it) and just as we walked back to the car, my friend arrived to take Sebastian home, put him to bed and wait for me to get home, for as long as I needed. 

As I walked into Mark's room I could hear his laboured breathing.  I instantly held his face and kissed his forehead and checked him over.  I noticed his fingers were turning blue so I asked if he could be given oxygen.  But his breathing never improved.  I dimmed the lights and played some music, held his hand and rested my head on his shoulder.  I knew deep down this was it. 

Unable to relax, I grabbed his mobile phone and started going through the hundreds of emails in his Inbox.  Emails that had been received back when he first entered the hospital, nearly seven weeks ago. I lost count of how many mailing lists I unsubscribed him from and while I deleted hundreds of emails, I did leave the ones that I felt he would suggest are important.  It was like I knew he would pass, but then again, never giving up hope completely. 

At 10.15pm he stopped breathing and so did I.  I looked at him and then he took a big gasp of air.  I watched him and held him tight and he did it again.  I rang the nurse and we removed the oxygen as it was having little effect.  Less than ten minutes later, he took his last breath. 

So now he is at peace and I can officially start grieving, although I have been grieving for weeks now.  I have cried so much and watched the colour drain from his face, yet it still doesn't feel real.  Everything is so silent now, like the world just stopped spinning.  It's nearly 2am and I have little chance of getting to sleep.  Knowing I have to tell Sebastian in five hours that his father has passed, more unbearable than I can even express, even though we have talked about it several times and cried a river together.  I guess we will cry another one again and again for a while.

Mark was such an amazing man and not many really got to know him as well as I did.  Even from his hospital bed he made sure I had the gift of a piece of jewellery for my birthday.  He had mentioned it to me months before and I dismissed it as I didn't want an item to remember him by.  But I guess he knew deep down all along and with the help of our amazing friends (again) I was given a beautiful pendant, engraved with our three names.

Mark was a beautiful man and I was so very blessed to have him in my life, because I have now experienced true love and I am so grateful of such a special gift.  Many people go through life never really experiencing it.  I had been married before and had many failed relationships but our relationship was different. It was built on respect for ourselves and each other.  We did not have to agree on everything, but we always listened to each other.  Mark was a great listener and I will honour him by trying harder to be a better listener to others.  Because I myself now really understand the value in having someone who will just listen.  Not judge, not offer solutions, not give me advice, just listen.  It's a rare quality, and Mark, I will try to be better at that, for you.

I will honour your life with as much grace and integrity as I can, and know that you touched many people in positive ways and that together we were unstoppable.  So now Sebastian lives on to be the boy you taught him to be and I promise to guide him, listen to him and speak of you often.  He will learn everything about you, so he too can be as special a man as you and learn to love a woman in a way that will make you proud. 

I will love you forever and miss you every day, for the rest of my life.  Goodbye my darling, may your next life be even more special than this one, if that is at all possible.

Post Number 41 - Every day is a Marathon

Every day, every hour, every minute is filled with things to do.  My daily routine sometimes feels like a daily "grind".  Getting out of bed is my first major challenge as I know all too well, what my day entails. Often my sleep is not deep or is incomplete and it would be far easier to pull the covers over my head and pretend my life is not what it is.  But then Sebastian gets up and sometimes comes into my bed for a cuddle and Else cries and cries as she wants to be let out, so out of bed I crawl.

After the usual preparing breakfast, school lunch and packing bags, we head to school.  Before leaving the school grounds I ring my local café for my daily coffee order which they have ready and waiting for me on my way through to the hospice.

Once at the hospice, I gather Mark's breakfast of porridge and poached eggs and add all the ingredients to maximise the nutrition (probiotic plain yoghurt, fresh berries, supplement powders, 100% juice not made from concentrate and no added sugars, added fibre and highly nutritious seeds).  Mark is usually sleeping when I arrive and his head is often hard pressed on his shoulder and in an awkward looking position.  I then have the honour of inflicting pain on the man I love, to massage and loosen the muscles in his neck, enough to get his head up and straight, so that I can feed him his breakfast.  It's agonising for me and for him, but it has to be done.  I massage in magnesium oil and warm the muscles with heat packs.  Nurses tried using muscle relaxant drugs and pain medication, but nothing took the edge off the pain as much as the natural approach of heat and massage.

After breakfast it's time to give him his wash in bed, clean his face, shave and attend to any bed sores or dry skin.  We now lift him into a special supportive chair every day and most days he stays in the chair until the evening.  I wheel him out on to the veranda, make him a cup of herbal tea, massage his hands or do a little physio or play his favourite music and just hold his hand.  The hours pass quickly and before I can say "Herbal Tea?" it's already 11am!

I usually leave around 11.30am to allow him to have a little sleep in the chair before lunch arrives.  I then tend to other duties such as grocery shopping, study or general house keeping duties such as paying bills and completing the paperwork for our tax and GST reports.  Before I know it, it's 2.30pm and I rush to finish whatever I am doing to be able to get to the school to pick up Sebastian.  Together we go back to the hospital so I can give Mark his DCA and prepare Mark's dinner, including boosting his hospital soup with homemade bone broth and adding probiotics and other supplements into his dessert.  From there Sebastian and I head home, cook dinner and enjoy what is left of our evening.

Up until today, I would usually put Sebastian to bed and collapse on the lounge, becoming a true-blue couch potato and watching mindless TV.   Zoning out to everything.  But this doesn't work.  When I go to bed and all is quiet and no matter how tired I am, no matter if I read or not, I can't sleep. There is no point trying to drown out what is happening.  It IS happening. 

Today I spoke at length with the Hospice Chaplin.  I don't have much time for Chaplin's I'm afraid, but this guy is different.  He speaks my language and seems to really understand me-which is rare. He listens and seems to understand and agree with my way of thinking.  We talked for hours and he witnessed my frustrations with doctors and other staff.  For once I felt heard and understood, supported and unafraid to be me.  It was better than any counselling session I have ever been to (not that I have been to many because they generally don't understand me and want to tell me what to do).

Our Schnauzer "Else" doing her bit!

Last week was another test of my strength when one problem after another presented itself.  First Mark was put on a diet of pureed food (baby food basically) because he had failed to chew up and swallow a steak that was overcooked, tough and inedible.  As I was not there to speak on Mark's behalf, the decision was made. The mush he was then served up was not pleasant and I lost all control of the food choices for Mark.  The quantity of food was also greatly reduced, ironic when there was a concern of "weight loss" which was addressed by giving him less food!  After finally winning that exhausting battle over several days and getting his food menu reinstated, I came home one evening to a trashed house.  A thunderstorm sending my dog and the neighbours Golden Retriever into a quivering mess.  In their panic to get out of harm's way, the doggy door was broken, our new shelving in our entryway was buckled and painted doors where scratched to pieces.  I took a deep breath, calmed the dogs, put on music and left the house again to go to the hospital.  Two nights later, crashed-out on the couch and about to go to bed, I heard an enormous crash and smash of glass.  I was terrified, but I had to go toward the noise as it came from the area of the house where Sebastian was sleeping.  The shower screen in our bathroom had smashed and the glass was cracking and falling to the tiled floor.  There was glass everywhere.  I was shaking with fear, although I could not see any explanation glass explosion.  I rang my neighbours and within minutes they came to my aid.  Together we cleaned up the glass and removed the frame that had been holding the glass, so that Sebastian could safely walk to the toilet in the morning and I could still have a shower.

During the clean-up process I closed the Sebastian's bedroom door, so as to dull the noise of the vacuum cleaner.  In the process I jammed my thumb in the door frame.  I felt so defeated, yet I also felt a surge of anger.  What did I DO to deserve this?  What more can the Universe throw at me to try and break me?  I wanted to cry at the pain and scream at the ridiculousness of this situation.  But I took a step back and looked at what was happening in front of me.  It was 10 o'clock at night, and my friends where here, cleaning up my mess and making me feel safe.  What was there really to cry or scream about? I'm ok, I'm cared for and I'm loved.  Isn't that what we all really want in life?  When you take a step back from all the "stuff", what is it we really seek?

Today was a breakthrough day for me and I feel much lighter and happier.  Maybe Mark's time on this earth is over and maybe he has fulfilled his journey.  I accept that may be the case and maybe our time together is coming to an end.  Maybe all that I am doing with supplementing his food and giving him DCA is not going to change the final outcome.  But I KNOW in my HEART, this is what I must do right NOW.  I don't fully understand the things I do, the things I say or the things I write, but I do know that I have always been True to Myself, whether that has offended people or not.  I don't lie, I don't sugar coat and I don't try to be or act how others feel I should.  You can love me or hate me, admire me or despise me, but don't ever feel sorry for me. I am living the life I was meant to live and I accept whatever outcomes present themselves.

The Chaplin asked me to write him a few words, a mantra or prayer if you will.  He believes strongly in sending loving words and positive affirmations to people in need, to help them with their journey.  I too believe in this, and I often allow myself to just sit and feel the love that others send to us.  I understand that not everyone can physically help or that many of Mark's friends find his situation too confronting and too difficult to face.  I understand and I don't feel anger.  But I can tell you that it doesn't take words to help someone who is facing his mortality.  Sometimes just being there, holding a hand and saying "I'm here" is more than enough and while you might feel sadness, I'm sure you will also feel good.  It's nice to see hundreds of people at a funeral, but for me, the time to say goodbye has already passed.  Maybe the time to say goodbye is while the person is still living and the funeral is to honour the life of the person.

Many people are taken too soon.  Young people and even children who still have so much living to do.  Often people are taken and family and friends don't have that opportunity to say goodbye.  I can't imagine how difficult that must be for their families and loved ones.  But we have lived with this disease since Oct 2012 and we have LIVED every day since.  Our last holiday in Kangaroo Island may not have been perfect, but the photos and memories are priceless.  Sebastian and I have cried a river and we are both at peace with whatever the future holds.  My mantra for the Chaplin and for myself are as follows and you may choose to send them to me too or maybe you won't.  Either way, I will not judge;

May I stay connected
May I remain true to myself
May I be kind to myself
May I allow myself to feel the love from others
May I feel peace in the life I have been given

Post Number 40 - Daw House Hospice

It's been two long weeks since "that rehab meeting" and things did not progress as we had imagined they would.  Mark was indeed transferred to rehab the following day and they commenced work that afternoon.  After college I visited him in his new room and spoke with staff.  They were very friendly and seemed quite accommodating, so I felt he was in good hands.  But that soon changed...

Day One of rehab and Mark was met with a gruelling day.  He was lifted out of bed for breakfast at 7.30am, then back to bed, then lifted out again for shower, then back to bed, then lifted out for Rehab treatment, then back to bed, then lifted out for lunch in the dining room, then back to bed, then lifted out for afternoon treatment, then back to bed, then lifted out for dinner in the dining room, then back to bed!  Considering he had only been out of bed around four times in 15 days, this new regime nearly killed him - literally.  In the middle of the night, after just one full day, his brain began to bleed again and he had an absent seizure and any last bit of strength and movement that he had on his left side all but disappeared.  He was now paralysed on the left side of his body. This also included his neck and he was now no longer able to support his head, which now flopped over to whatever side gravity pushed it to.  I was contacted the following morning and told he was to be transferred back to the ward.  In complete shock and as a reflex action, I contacted palliative care and asked if he could be transferred into the Daw House Hospice until I could make arrangements for him to come home.  I had had enough-he was coming home with me!

When he was finally settled in to yet another set of new surroundings, he was quite understandably confused and disorientated.  He did not understand why he had been moved out of rehab and was wanting to return for his next session.  When doctors asked him what he would like to do, he responded with "I want to be able to get up and move around a bit".  The doctor looked at him confused and then at me and responded, "I think we need to aim for something a little more realistic".  I disagree.  It's Mark's life and if he wants to have a goal of standing up, then that is his choice.  No one has the right to say, sorry Mark, but you are going to die, so standing up is not an option!

He has been at the Hospice now for 12 days and he has the best room in the house, with a door that opens to a veranda/garden courtyard area.  The windows can be opened and I have made the room as homely as possible.  His room has a fridge, so I can load it up with lots of healthy food and drink while enjoying quality time with him.  Sebastian has become quite comfortable there too and regularly washes our dishes when we come in with Sunday morning pancakes or evening meals.  He knows how to use the video games and loves playing on the veranda or watching TV in Dad's room.  It's a very different environment, one that is mostly about caring and respecting family and patients in their last days.  I cried every day when I saw how broken he looked.  He was so medically well when he left the ward and now he looks so broken, so weak and so very tired.  Family where contacted and they came up to say their goodbyes.  A difficult time for all, to say the least.  The pain and grief overwhelming for everyone, including me. I felt I had to accept that this was it, nothing more I could do to try to save his life - or is there?

I still quietly hope and pray that there is still something I can do.  I give him his supplements, nutritionally boost his hospital food and as of Saturday night, I began giving him DCA again. I figured we had nothing to lose, so why not.  I had already had his dexamethasone reduced after a CT scan confirmed the brain had indeed bled again but the tumour size had not increased.  This gave me the hope that there was still a chance as it had now been four weeks since he had last had DCA and with all the blood, one would have expected his tumour to grow out of control, and yet it had not.

Last night I visited Mark to give him his second dose of DCA as well as his dinner and I was surprised to see how bright and alert he was.  He had been sitting in a supportive chair all day and was moving his right arm and leg to give himself some exercise.  This was a far cry from the man I had been watching slowly slip away.  We had a lovely evening together, thanks to the help of my Mum, who came to my aid in my time of desperate need.  She stayed with us over the weekend, to help look after Sebastian so that I could do some much needed study and spend evenings with Mark.  I know it's a long-shot, a real long-shot, but I also know that the blood in his brain will take weeks and weeks to go away.  So what if many of the symptoms are from the blood and not the tumour?  I don't know the answer-nobody does.  But I have nothing to lose and absolutely everything to gain, so I dig deeper than ever before and find the strength to move forward.  But my own health is being compromised, so I must stay on top of that also.  Not that easy to do when I spend every waking minute looking after either Mark or Sebastian.  No time for tears or feeling sorry for myself-there is work to be done. I have been given this life for a reason, so I will embrace it and find peace within it, no matter how difficult that may be at times.

I mull over all that has happened.  Every symptom, every seizure, every bleed.  The bleed (haemorrhage) in his brain could be caused by two possible scenarios.   1) The tumour has grown and the disease has progressed.  This is the obvious scenario and the line the medical profession will always take, as this is brain cancer.  It does not reverse or go in to remission.  2) The tumour has begun to break down and through this process, it bleeds.  I needed to stop giving him the DCA in fear that cells would continue to break down and cause more bleeding.  With Mark now stable and a CT scan confirming the tumour is stable and there is additional blood, we were given the "ok" to reduce the dexamethasone dose, which will give his body a chance to heal as this drug tends to inhibit wound healing, but is excellent in reducing inflammation. 

I don't know if this is the right thing to do, but it feels right and makes logical sense to me.  The dose I am giving is minuscule in comparison to what he was having before, so hopefully it will be a gentle enough approach to not cause any more bleeding.  I could just let him go, let him slip away, but every time I decide to do that, something gives me a reason not to.  Small signs from a power greater than I.  A feeling, deep in the pit of my stomach, a discussion with a friend, information from my text books or lectures, just a deep voice that says, "not yet". 

Post Number 39 - Guardian Angels

How do I even start to explain how I am feeling tonight?  Emotionally exhausted, physically barely able to function and quite lost for words?  I have not slept in days, the stress and pressure of trying to get Mark accepted into Rehab leaving me wondering, "Was it really worth it?"  My body physically aches and is locked up in places it has never locked up before.  I am in pain, both physically and emotionally.

Last Friday the chief of Rehab visited Mark, and in my absence, asked him if he wanted to go home.  Of course, anyone who has been in hospital for over two weeks aches for home, so of course he said "Yes".  Was that all that was spoken at his bedside? I will never know.  Was it clearly explained to Mark that going home now would mean being "bed bound" and he would basically be sent home to die as he will never recover? I don't know and Mark can't remember the conversation, which makes me wonder if there even was one.  All he remembers is some doctor asking if he wanted to go home.

I was furious to say the least and I soon tracked down this person and asked the meaning of question.  I was advised that Mark's condition had deteriorated further and that rehab would be a waste of time and resources for a person who is unlikely to make any progress. Keeping my despair under control, the hospital social worker quickly jumped in and said, "Let's have another meeting to discuss where we go from here" and the arrangements were made for Monday at noon...TODAY!

So I had the whole weekend to wait and stew over this meeting, knowing that yet again, Mark would be left in his hospital bed without any exercise, movement or even sitting up in a chair.  Physio had promised two sessions per day in the hospital ward and that indeed happened on ONE day, then one session the next, then nothing.  The hospital ward is not the place to try to rehabilitate someone and resources are stretched way too thin.  It's an impossible task.

Thankfully Sebastian was looking forward to a wonderful weekend with one of my many Guardian Angels and after seeing his Dad on Saturday morning, he happily went off for his weekend adventure, leaving me at home to try to catch up on hours and hours of study.  Another one of my Guardian Angels also came to the rescue to help me to give Mark some physio therapy over the weekend.  If the professionals were not going to do it, then me and my Angels would.  So on both days, Mark had three sessions of exercises in bed plus two times of sitting up on the side of the bed, supporting his body and practicing sitting up straight.

After spending as many hours as I could studying, with only an apple for lunch, I decided to have an early dinner.  As luck had it, I had some left overs in the fridge.  While heating it up I had the idea to have dinner with Mark as I knew that he would be having his dinner delivered about now.  With no need for a baby sitter, I packed up my dinner and some special treats and headed for the hospital.  Together Mark and I ate our dinners and chatted, then put on a movie through his "Telstra Bedside Movie on Demand" system.  It was a lovely evening and having the ability to close the door of his private room and just be together was priceless.

The following morning, I decided to make pancakes and also bring them in to the hospital.  Sunday morning pancakes is a tradition in our household and it seemed pointless to make pancakes for one, so I grabbed the picnic basket, and loaded it up with freshly made paleo pancakes, coconut yoghurt and fresh berries - the taste of home.  Mark's eyes lit up and together we enjoyed our pancakes and another special moment together, as well as a shave and some more physio work.  Once satisfied that I had completely worn him out, I headed home to cram in more study before Sebastian would return home that afternoon. 

I have lost count of how many nights I have gone without sleep.  Even sleeping tablets, which I have never taken in my life, are having little effect.  Mark's fate was now in my hands.  At Noon today, I was to state our case as to why Mark deserved to go to rehab.  Another Guardian Angel was at my side today.  She supported me, held my hand and gave me strength as I sat at the head of the table and gave my speech-the speech I had been rehearsing for days and nights.  My hands shook and my voice began quivering, but then I found my inner strength and I stated the facts about what had occurred over the past 15 days.  The entire time I spoke, every person in the room (around 8 or 9) had their eyes firmly planted on me and my speech, all except the head of rehab, who bowed his head the entire time, until it was his time to speak.  It was most nerve racking and as he spoke, he stated his case as to why Mark should go home.  I held my breath and held my Angel's hand, thinking, "This is it, he is going to refuse him".  I did my best to keep all emotions in check and stick to factual information, again adding more information into the discussion.  Eventually, after a one hour meeting and input from others in the room (Palliative Care, Physio, Social Worker), the Chief of Rehab, reluctantly accepted him and began making arrangements for a bed for him in the Rehab ward. 

Everyone left the room with the exception of my friend, the social worker and the Pal Care Worker, and when the door finally closed, I burst in to tears.  I was congratulated on my hard work and dedication to Mark, but it did not feel like a win to me.  I had to fight too hard and there is now so much pressure for Mark to show some improvements.  Parting words from Rehab where, "it is unlikely that we will see any improvements at all.  If so, we would have already seen some improvements by now.  No I don't feel victorious, just exhausted.  I went to give Mark the good news, took one look at him and as he smiled at me (something he doesn't do much these days), I sobbed and sobbed and hugged him so tight.  "You're in" is all I could get out, "You're in".  I held his face in my hands and looked him in the eyes as tears streamed down his face.  "I hope there happy tears?" I asked.  "Yes" he replied "Thank you so much".  We hugged and I sobbed some more, before pulling myself together and turning into a sergeant major.

Time for your workout, and off we went, exercising in bed and sitting up on the side of the bed, in full knowledge that it would be unlikely now that he would receive any more physio while on the ward.  Picking up Sebastian after school, we called in to the hospital for one more physio session before heading home and giving Sebastian some quality time with his Mum.

I have been commended for my dedication and been told I am an inspiration and while I am truly touched by these comments, I also feel a little confused.  Mark is "the one".  He is my true love, my soul mate, my world.  Yes I have Sebastian of course and he is the other part of my world, but we are a trio.  Our love for each other is infinity.  I can't imagine doing anything else but fight for the rights of the man that changed everything for me.  No other person on this earth understands me like he does.  He loved me at my worst and admires me at my best.  I constantly say and do things that offend or upset people, but never with the intention of hurting anyone.  I would do anything for anyone that I care about, but I am often misunderstood.  My mother shares the same fate, always giving herself to others, but often misunderstood because of bad delivery.  So I guess it's genetic.

So now we wait for Mark to be transferred which, I am told, will take a day or two.  Tomorrow is College for me, but first I must see the Osteopath to unlock the muscles in my shoulder.  I cannot give Mark much physio tomorrow, nor will I be able to spend as much time with him as I normally do, as I feel I am failing my Pharmacology subject and missing just one lecture would surely seal that fail.  One day at a time is all I can do, just one day at a time, one foot in front of the other.

Post Number 38 - The Long Road to Rehab

A week has passed since my last post and still Mark has not transferred to Rehabilitation. A blood clot was found in his left leg-not surprising since he has had very little physio and nurses would not get him out of bed without the aid of a lifter. Compression stockings had only been put on days before. 

The clot brought with it the risk of complications.  If the clot were to move to the upper part of his body, it could lodge in his heart, lungs or brain.  As he had already coughed up some mucus containing blood, doctors were quite concerned.  It was decided that the bleed in the brain was only small and that some blood thinning medication would be the best solution to prevent further clots.  So late Friday evening, the first blood thinning medication was administered via a needle.  This continued twice daily over the course of the weekend.

As the weekend progressed, Marks condition deteriorated even further and seizures now became a daily occurrence.  Nurses who were pressured for time and over-worked, simply didn't understand that rolling Mark over would cause him massive discomfort, cause the blood to rush to his head and consequently cause a seizure.  It seemed I was talking to a blank wall when I repeatedly asked them not to lower his head lower than his feet.  They ignored me and gave Mark pain medication as they believed he should not be in pain, even though they were the ones who had caused the pain and the seizure.

Monday morning I visited the hospital in my usual routine of taking Sebastian to school, grabbing coffees and seeing Mark.  He drank his coffee and I slowly lowered his head in preparation for the nurses to clean him with their hot wet towels.  I begged them not to lower his head any further and roll him so far over.  But it didn't matter.  As soon as they started to move him the seizure came, only this time his eyes glazed over and stayed that way.  I talked to him and held his hand, waiting for him to come back, but as the minutes passed, I became more and more concerned that he was not going to return.  It was nearly ten minutes before his eyes showed signs of life and I held myself together and took a deep breath.  I spoke with the doctors and explained how his symptoms had been exacerbated over the weekend and that I believed the blood thinner was the main cause.  I also believe the coffee may have contributed.  I demanded that the blood filter be installed to stop the clot from moving to his upper body, as per the discussion last week, and that it needed to be done as a matter of urgency as he had been left, yet again, to wait until "business hours" for anything to be arranged.

Later that day, Mark was transported to the Flinders Hospital and the blood filter was successfully installed and blood thinning medication ceased. But still no word on transferring to Rehab so I started asking questions.  One source told me there were no beds while another source later that day, told me that Mark was not medically stable to go to rehab.  On top of this, I had discussed with one of the doctors, the use of codine plus paracetamol (Codral Cold Flu tablets) to assist in reducing the mucus that was now causing pressure in Mark's head.  Nurses had again started giving him Panadol as he was complaining of headache but when I came in at 9am, I could easily see and hear that he was full of mucus and phlegm again.  Doctors agreed that I could supply this medication and it would be given to him at lunchtime.  Satisfied that everything was in hand, Mark had been cleaned in bed without having a seizure, I felt it was safe for me to attend College.  In my break at 1pm however, I discovered that the medication had NOT been given and when I asked the nurse to administer it, she told me that "I did not have the right to demand he have medication and that Mark had to ask for it himself, which he had not done".  Another nurse that same morning had stated to me that "Mark always has a headache just before he has a seizure", as if she knew my husband better than I did. 
All these things started to swim around in my head while I sat in my Pharmacology lecture, unable to concentrate on the various types of antibiotics and how they work in the body.  My blood boiled at nurse’s ignorance and careless attitude.  By the time I picked up Sebastian from school, I had to tell him that we were having problems at the hospital and that I needed him to be patient while I spoke, very sternly, to medical staff, especially when I then learned that there was no hope for Mark to go to rehab this week.  It had been 11 days since Mark had been admitted into the Repat hospital.  11 days surrounded by geriatric men, who were either bed bound or had dementia and who were totally or mostly deaf.  11 days with very little physio or activity.  11 days without a shower.  11 days of waiting for someone to give him a chance.  As you can imagine, if you know me at all, I lost the plot!

Needless to say, Sebastian witnessed how to fight for someone's rights.  How to be stern, angry, yet not yell or be abusive.  At least, I hope that is how I came across.  I stated the facts, stated my dissatisfaction and threatened to discharge Mark and take him home.  Within ten minutes of the conversation, I was offered a private room for Mark, daily efforts to get him out of bed, extra physio and a shower in the morning, so I guess the message came across loud and clear.

This morning (Wednesday), I visited him and he looked very unwell and tired.  But then I learned that he had already been out of bed, showered, sat in the chair, had breakfast and was put back into bed again to rest - all this before 9am!  The man was exhausted.  I told him how proud I was of his efforts and that I understood how hard that was for him to do.  He fights on, as do I, however the pain in his head may change his opinion of doing it again tomorrow, but we will see.  Mark has always been the quiet achiever, while my presence is usually felt.  But we are both fighters in our own ways and we continue to fight each day, each hour, each medical system, until we feel it’s best to stop, which will always be his call.  It's not the cancer we are fighting, it's the chance to "give Mark the opportunity to try to rehabilitate, the chance to get better, rather than just riding him off as a terminal patient with a wife who can't accept that her husband is dying." Maybe he won't get better and I accept that this may happen, but while he is willing to push himself, I'm happy to advocate for him, no matter who I rub up the wrong way.  While I still see there is a chance, I'm going to push.