Terminal Illness – Page 9 – Vic's Final Journey

“Live like you were dying” – Tim McGraw

I read this post today – http://daysnet.wordpress.com/2013/02/03/we-need-to-step-back-and-just-breathe/ I always remember the Tim McGraw song

“LIVE LIKE YOU WERE DYING”

He said “I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin’ ’bout the options
And talkin’ ’bout sweet time”
I asked him
“When it sank in
That this might really be the real end
How’s it hit you
When you get that kind of news?
Man, what’d you do?”

He said
“I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying”
He said
“I was finally the husband
That most of the time I wasn’t
And I became a friend a friend would like to have
And all of a sudden going fishin’
Wasn’t such an imposition

And I went three times that year I lost my dad
I finally read the Good Book, and I
Took a good, long, hard look
At what I’d do if I could do it all again

It dawned on me that we have been luckier than most. We have lived as if Vic was dying all our lives. We lived every second. Vic lived every second. Only the last week of her life she went into dying mode. Only once she was sedated did she succumb to dying. The rest of her life she lived; we lived her life. Every single birthday we celebrated Vic’s life.

We have a family tradition, (which the kids hate), of having eulogy speeches on everyone’s birthday. So on our birthdays we would go around the table and everyone gets to say something nice of the birthday boy/girl… We call it our “Living Eulogy”… So often we only speak well of the dead. We treat the living with contempt and disregard; we do not acknowledge their achievements and goodness…We are so focussed on success. Success by our own terms!

I am grateful for our family tradition and I will not allow it to die off… I am grateful Vic knew how much we revered her….

Vic did not have a career or a degree, fame or fortune. Yet she has touched thousands of people’s lives worldwide and will continue to do so through Stepping Stone Hospice. I am grateful that she heard how much we loved and respected her. The most common words were “You are the bravest person I know…”

Vic was an amazing mother. She loved and nurtured her boys. I wonder whether they ever witnessed her tears of pain when she cooked for them or made their lunch for school…. I did.

We will continue to honour Vic’s life through our actions and words.

There is no limit

I have received many words of encouragement and support from so many people. Some just say “hugs” and other’s offer advice. One of my most loyal supporters is a lady called Miss Morgan’s Mom – She lost her 16-year-old daughter in a senseless accident. She lives her loss and grief pours from her posts. I remember one of her first posts I ever read on her blog she was counting the days (still does) and her grief was so raw and all-encompassing. I recall thinking “Oh God, is this what awaits me?” At the time I could only comment “hugs”…. A couple of posts ago she wrote that 14.5 months after Morgan’s death she is finding it more difficult to blog. People want her to move on…. get on with life.

Last week, a mere 3 weeks after my most precious child’s death I was told by people “Let her rest….Concentrate on the boys” ; “don’t let the boys see you cry…”

On Thursday I cried in front of the boys as I did this morning in the supermarket. I will not apologise for my tears. My child deserves my tears.

I realize people want me to move on because I scare them when I am sad. They are used to me being strong, fighting for Vic’s life, always laughing, always in control.

On Saturday Esther, Vic’s sis, asked me “So what does Google say? When do sisters start feeling better?” I replied “Never. you just get used to the pain”

I read this amazing post and had to share it. Reposted http://missmorgansmom.wordpress.com/2013/02/04/there-is-no-limit-to-ones-time-for-grief/

THERE IS NO LIMIT TO ONES TIME FOR GRIEF

Posted by missmorgansmom in Uncategorized and tagged with accountability, death, Dreams, drunk driving, Facts, faith, family, fear, frustration, grief, grieving mothers, grieving parents, Have Faith in Me,healing, hope, hopelessness, life, living, loss, love, Morgan Ray Dingus, mothers against drunk driving,mourning, pain, purple, Remorse, society, timeFebruary 4, 2013

When someone is grieving i believe in my heart that many if not all outsiders have the best intentions to help I truly do, but understandably they have no real concept on how long and how often the mourning need support or just understanding. People that lose loved ones, I have come to find that there is no limit to the time it takes for each individual to find their new normal. I think that sometimes when people view the lives of the sorrowful, they think that the person or people grieving should have come to terms with their loss after a certain amount of time. I have found this not to be true, I have sadly gained the knowledge that every moment to everyday is different. It is so hard to help people understand that we need to grieve as long as it may take. We all seem to have our own way to do this, whether it is to submerse our time into our work so that our mind has little time to feel the pain, or that we become some what of a recluse trying to understand our torture. There is no right or wrong way to grieve, there are no rules. I personally try to battle the pain by writing my feelings at that moment. I think some may not understand and my God am I thankful for that because I would not wish this on anyone. It is so important to me to put out there that when you see someone struggling and they may seem as if their path is destructive, it might not always be as it seems, sometimes we must look outside the box! This is because anyone who is grieving that keeps having emotions whether negative or positive has not given up the fight. I cannot identify my grief with anyones else, I have learned to accept the death of my father and step mother and although it still hurts, I have learned to move forward. I have found that burying a child is a completely different kind of grief for me anyway. I am moving forward, I am fighting to become a new normal. I have found that not just me but all other parents who are trying to win the fight are on this similar path and they may feel like there is no end, keep fighting. I want to post this link for those that may be fighting this fight to maybe offer support that you are not alone. I also want to post this for people who may just want to understand some of the process grieving parents may be going through. I am also posting some writings from this site that have heart felt meaning to me. https://www.facebook.com/pages/Grieving-Mothers/162680380444494

Dear Clueless I would like to share with you my pain but that isn’t possible unless you have lost a child yourself and that I wouldn’t want you to have to experience. So with that being said, I would like to say this. I will try to my best to understand you if you try to understand me. I lost my child. My life will never be the same. I will never be the same again. I will be different from now on. I no longer have the same feelings about anything. Everything in my life has changed from the moment my child left to go to heaven. I will, on some days be very sad and nothing you say will changes that so don’t feel like it is your job to make me feel better on those days, just allow me to be where I am. When you lose a child you not only lose your reason for living, you lose the motivation to go on. You also lose your sense of self. It takes a long time to come to some kind of understanding for why this has happened, if ever. Of course we who have lost children know we have to go on but we don’t want to hear someone else tell us too. Especially from someone who has not lost a child. It makes me and anyone who has lost a child want to say who are you to tell me that? Did you bury your child? I don’t want this to sound like I don’t appreciate everything you say because I know you mean well, but I just want you to appreciate where I am coming from too. I want you to understand that some of the things you say hurt me and others like me without you really knowing it. I know it must be pretty hard to talk to people like myself, not knowing what to say. That is why I am writing this letter. If you don’t know what to say, say nothing or just say I’m sorry. That always works for me. If you want to talk and say my child’s name feel free I would love to hear her name anytime. You not saying her name didn’t make me forget it, or what happened to her. So by all means say her name. When special dates come or holidays come please forgive me if I’m not myself. I just can’t keep it up on those days. I may wish to be by myself so I can think about my child without putting on a front. Most of all I want you to know I’m having a hard time with the death of my child and I am trying my very best to get back into life again. Some days it may look like I have accomplished that, and other days like I am at square one. This will happen the rest of my life periodically. There are just no words to explain the living hell this feels like. There are no words that could ever do it justice. So please bear with me and give me time and don’t put your own timetable on my grief and let me be the person I am now and not have to live up to the person you think I should be. Allow me my space and time and accept me for me. I will try my best to understand you. Love, Your Friend in Grief

Children are so fragile…..

Day 22 has finally arrived. Day 21 dragged on and on… I waded through a haze of misery today. Jared had an horrible day. I could see he had cried.

Jon-Daniel has a friend sleeping over. He is a young boy of 14 who lost his dad to a drug overdose a year ago. I asked whether he had been for counselling. He said he had but that it had not really helped.

“I had to get over it by myself” this old soul said.

“The shrink kept telling me I must forgive my dad. I hated my father for using drugs. So I stopped going. He wasn’t listening to me so there was no point…”

I have to travel to an exhibition in the UAE from the 16^th – 21^st of February. Upon my return the boys and I will go and see the Hospice psychiatrist again. I think we would have worked through enough grief to be able to cope with this part of our journey.

Children are so fragile. On the surface they appear to be coping yet the pain lies shallow…

Last night Jon-Daniel cried. Today Jared battled to breathe.

21 days

It is exactly 21 long, miserable days, to the second, since my precious child stopped breathing.

now and forever

Today at times I felt as if I was suffocating. It felt as if the grief had grabbed me by the throat and was strangling life out of me. My heart physically ached.

In the infamous words of Queen Elizabeth 11 “Grief is the price we pay for love.”

Vic was an only child. I spent the first 16 years of her life dedicated to Vic and only Vic. Vic’s dad and I separated early in our marriage. Even in the years that we were married he studied part-time and only got home from University after 10 at night. Weekends – well that was busy…

When Vic was 16 I married Danie. He became her dad and she embraced the fact that she now had siblings. Danie loved Vic with the same pure unconditional love that she had for her boys. Vic admired, respected and loved Danie for the wonderful dad that he was to her.

Tonight I cannot help but think and remember all the love and nurturing that went into Vic’s life, caring for her, raising her, nursing her when she was sick and taking her to the doctors, teaching her all the things she needed to know to keep her safe in this crazy world, teaching her the art of shopping, watching her get married, fall pregnant – twice, survive 81 abdominal surgeries, fighting for her life every single day. I loved the mother that Vic was. Caring and nurturing.

Tonight I remember Vic’s trademark – getting dressed in clothes every day before the boys came home from school, waking up to see them off to school every morning, arranging a party if she had one ounce of strength left! Vic appreciated seeing the light of day, getting out of bed, seeing the faces of her children. Every day she breathed was a day that mattered to her. Every day she used to make memories with her sons, family and friends.

Every day was one more than she had the day before.

She loved driving her little car. (Vic was a terrible driver!). Vic was the take-out queen. She LOVED take-outs! The last meal she ate was a bit of a Steers hamburger….

Vic was a good, honest, compassionate, caring person who loved loyally and deeply! She was strong-willed and fought for what she wanted. She did not tolerate disloyalty in any form.

Vic toured Egypt in a wheelchair and with a cane! Her biggest wish was to attend Jon-Daniel’s honours evening (4 days before she died) and to travel to Italy.

Vic was brave! She NEVER complained. She accepted that pain was part of her life; that being ill was her life. She seldom questioned the cards she was dealt. She accepted her life stoically.

I KNOW how hard it was for Vic to get out of bed. I know how easy it would have been for her to curl up and die very early in her life. She held on to life until the bitter end because giving up was not an option!

I thought I was well prepared for this period in my life. I prayed so long that God would release her tortured little body from the hell she lived every day. I spent years waiting and wondering how it will be. I have been told that I, of all people, should have been prepared for her death. After all I lived with my child’s terminal diagnosis for 10 years.

The short and the tall of the matter is that there is no way to be prepared. Researching the stages of death, the grieving process and even preparing her memorial service’s PowerPoint Presentation, in anticipation, could not prepare me for the pain that struck the second that my child died..

When I heard Vic’s breathing change I knew she was going. I knew that within minutes my child would be dead… Yet in the end, her death was still a terrible shock to me. How did it happen so quickly?

How do I go on?

Just as there are only some people we can really talk to about our children while they are alive, it seems that there are only a few people we can talk to about them once they have died.

When you lose a child you lose so much more that you may have been prepared to lose. I have lost my identity as a mom. I am no longer a Mommy. I may be a back-up mom to four wonderful young people who love me dearly, unconditionally and deeply but I am no longer a “real Mommy”. Mother’s Day will come and go…The four kids will celebrate the women who gave birth to them. The boys will not have a mom to buy a gift for and I will not have a child to wish me. I do know everyone will try very hard to make it easier for me. But Vic will not be here to wish me a happy Mother’s Day.

I have a hole in my heart. My heart physically aches. I want to die.

Tonight, 21 days after my baby girl’s death I remember a love and bond that was beyond description. I will continue to breathe; I will honour my promises to my child; I will bring up her beautiful boys; I will cherish her memories; I will grieve for my child. She was worthy of my love – she is worthy of my tears.

Sweetie I love you now and forever.

Owkay mommy I will….

The boys and I visiting Vic in hospital last year.

It has been a day filled with back to back meetings. I coped well (I think) and managed to focus. It was strange not checking my phone every couple of minutes to see whether Vic is okay or not.

I sent the boys’ text messages early evening as the meetings continued into the night.

Me to Jared: “Hi baby – you okay?”

Jared: “Hey Oumie. I’m okay thanks and you?”

Me: “Missing you”

Jared: “Missing you too Oumie. This house feels empty”

Me: “Will phone later just in a meeting”

Jared: “Owkay Oumie”

Me: “Sleep tight angel! Pse wake me so I can see you tomorrow”

Jared “Owkay mommy I will!!! Love you!!! Missing you too Oumie”

Breathe in, breath out, breathe in, breathe out…. I could not look up. I was petrified that that my colleagues would see the tears that formed in my eyes.

These poor boys! They are stoic in their grief. They carry on bravely at school and with all their extramural activities. They are so young to have gone through so much pain and loss. They lost their childhoods to Osteogenesis Imperfecta and doctor error; they have watched their mother suffer horrific pain, lose her dignity…Yet they witnessed their incredibly beautiful mother fight every second of her life to stay alive… She showered them with love and taught them independence. She was strict and her favourite words to them was “I am your Mother not your excuse”

The boys are brave like their warrior mother! A credit to her!

I wish I could wipe the pain from their hearts and memories. There is however no Ketamine Infusion for emotional pain, only for physical pain. I wish I could protect them for pain and loss but I cannot. I must continue with the phenomenal work their mother started in their upbringing. I must help them to continue growing and individuals on this path Vic put them on…

I miss my child more than I ever thought I would. I honestly thought, because of the extended “Anticipatory Grief” period, that we went through, the grief would be less after Vic’s death. That anticipatory grief is however NOTHING compared to the pain we are experiencing 17 days after Vic’s death. I don’t know whether I will ever get used to this void in my heart.

Will I ever be able to breathe without pain again? Will I ever sleep again? Will I ever laugh spontaneously with joy again?

I actually just don’t want to live with this pain…..

I miss being Mommy

I so desperately need to articulate my pain and yet I cannot. Words are inadequate and empty. There are not enough adjectives in the english language to describe my indescribable pain and longing for my precious child. Yet, my cyberfriend Judy has articulated my emotions pretty accurately. So in the absence of my own words I am posting Judy’s email to me.

Thank you Judy. Your words do help. What a horrible area to be experienced in – the world of grief….

Judy is right. I just want my child to be with me. I miss her more than I ever imagined I would. The void is like a never-ending well of despair. I miss being a grandmother and I miss being a Mommy….I am only a back-up mother now. An empty vessel.

Thank you all for your love and support.

Tersia,

I am not telling you that I know how you feel. I cannot know. Grief was so isolating and lonely that even when I had people caring about me, I remember my mind screaming that I would give anything to have my child back! It was such a horror. I could not concentrate upon anything. I could not read a single paragraph and know what I had just read. I could not sleep. I did not want to be alive anymore.

You are so supported – I see message after message flying across cyberspace to hug you. I see a lot of messages telling you to stay strong. I think what is typical for being a caregiver is the constant suppression of emotion. You were Vic’s caregiver for decades. You learned how it was important for you to be strong. I see how concerned you are about staying strong for everyone around you. I remember when I decided I wasn’t able to be strong anymore.

So staying strong might pose a conflict for you. At some point, all of your emotions might start to surface. It is terrifying. I was tired of hearing how my child’s suffering was over. Inside I screamed, “Why did my child ever have to suffer!!?” That was the beginning of my feeling very angry. Anger was a difficult place to be in, but it is a stage of grief. Men and woman grieve very differently, too. Navigating that was more than I could handle, so I retreated to be with other grieving mothers.

I’m wondering if my words are helpful. I guess I just want you to know that you are on a road that you will survive. You know that. Life will never be the same. You know that. Some people cannot enter the doorway of grief. They succumb to it. You have entered the doorway and are plunging ahead into the darkness. It hurts so much!

Love, Judy

it is 14 days today

It is exactly 14 days, to the second, that my precious child died.

OCVCC – Day three

It is day 3 of OCVCC (Operation Clean-out Vic’s Clothing Cupboards.) Today was unbearable.

Day one I packed up Vic’s clothing I did not like. That is the sexy stuff that showed far too much cleavage. I was forever saying “Vic – Your boobs are showing! Cover yourself!” or “Boob alert – the boys can see….” I know I was stupid but in my mind’s eye I always saw that little girl who needed to be protected from the world and it was difficult to see the adult, sensual young woman…

Day 2 was the “Fat clothes” day. There was not too much of that although Vic was overweight from time to time. The Addison’s cortisone treatment played absolute havoc with her weight.

Day 3 – today, was unbearable. It was the clothes that she liked and wore that had to be packed. As I was folding her little T-Shirts my tears dripped on the cotton. I held her favourite clothing items against my face and tried to smell her on them. I could see exactly how each item fitted her disease ravaged little body. I could hear her say “Don’t I look fat?”

I cried when I packed four drawers of pyjamas. There were dress-like nightgowns for after abdominal operations when nothing could touch her abdomen; three-quarter pants with T-shirts for good days; long pants with T-shirts for when she was cold and of course the stuff she never wore…the sexy stuff. I picked up the silky stuff and I knew that they were worn seldom if ever. We should be able to sell these quite easily in our second-hand Hospice shop…

The boys made up their memory boxes on Monday night. I started with wonderful intentions…I too would have a small memory box. I already have two large cardboard boxes plus my memory box filled with precious memories.

As I wept into Vic’s clothes I decided that there is no rush. I do not have to give the clothes to Hospice immediately. I will keep it all in storage until I am ready to part with it.

Never again will I see my precious Vic wearing any of it.

Every handbag I picked up had been cleaned out properly with the exception of a tube of lipstick. Every single handbag had lipstick in it!

Jon-Daniel has started moving into Vic’s room. It is the 2^nd largest bedroom in the house with the nicest bathroom. Yesterday we moved two single beds in and put Vic’s bedroom furniture in storage. Tomorrow we will move the lounge suite into storage. The dining room suite has been sold and delivered today.

All Vic’s earthly possessions have been moved as if she has never existed.

The lounge will become a games room with a pool and table tennis tables. The dining room we will convert into a dedicated study and computer games room. We will furnish the rooms with contemporary furniture.

In my heart I know Vic would approve the changes. She would HATE the fact that her furniture is in storage. I feel like a grave digging weasel but I am complying with her final wishes.

My Vic was a little squirrel! She accumulated STUFF. Vic was a compulsive shopper. In December, knowing that she was in the final stretch of her journey, Vic bought new clothes… Some of it she never got to wear. But it brought her joy buying it.

This weekend I will tackle the other cupboards. The cupboards that contain all tax and warranty related documents going back to 2001…. All neatly filed in plastic sleeves… I will keep the boys school files that she so lovingly kept up to date. Every drawing, school report, newsletter filed per boy by year… When they leave home one day and have kids of their own (that they will moan at for not studying….) I will hand my great-grandchildren their dad’s reports.

There are tons of papers to dispose of! There are boxes of educational toys and games from when the boys were toddlers; thousands of photos and piles of albums; ribbons from her childhood; diaries and journals; love letters from Vaughn, her first love; get better cards, birthday cards and goodness alone knows what else.

In the weeks before her death Vic occasionally said “Oh Mommy, promise me you won’t get angry with me when you clear out my cupboards…” If only she knew how many tears I have shed clearing out her cupboards.

I must confess I have always had a memory box with Vic’s first little outfit ever, her first school uniform, all her report cards, a lock of her baby hair… I will add to this box the lock of Vic’s hair that Esther cut after she had died.

Mommy’s home!

Vicky dripping in pearls... — Vicky dripping in pearls…

It is now 10 days since my beautiful child’s body came to rest… I cannot believe it is already 10 days and on the other hand I am amazed that it is only 10days….

Vic came home today. She was delivered in a little wooden box. The plaque simply reads “VICKY BRUCE 31.8.1974 – 18.1.2013”

The boys walked in after archery and Jon-Daniel said “Mommy’s home!”

Tonight the boys went through Vic’s cupboards to make up memory boxes. We laughed as we shared precious memories. The boys were selective in what they chose. Jared wanted one of Vic’s favourite Egypt T-shirts and Jon-Daniel her favourite track suit top… A lipstick and her driver’s licence; a brush each….

We opened her safe and in Vicky style everything was labeled and marked….

Her first pearls that she received as a little girl from my brother and his wife had a little note in the box…”Received from Johan and Henda when I was their bridesmaid. I would like them to have it back. I love you more than words. Johan you were always my hero! Henda you are amazing”

A note attached to two sets of earrings “For my boys from Mommy. These were from you”

Pink and white pearls labeled – “Received from Mommy and Daddy. Thank you for always loving me so much. I give these back to you now.”

My heart is shattered. I want to die.

WHEN TOMORROW STARTS WITHOUT ME…

When tomorrow starts without me, and I’m not there to see.
If the sun should rise and find your eyes, all filled with tears for me.
I wish so much you wouldn’t cry, the way you did today,
While thinking of the many things we never got to say.

I know how much you love me, as much as I love you..
And each time that you think of me, I know you’ll miss me too..
But when tomorrow starts without me, Please try to understand..
An angel came and called my name and took me by the hand,
It seemed my place was ready – In Heaven far above,
and that I’d have to leave behind, those things I dearly love..

But as I turned to walk away, a tear fell from my eye.
For all of life, I’d always thought, I didn’t want to die.
I had so much to live for, so much yet to do,
It seemed almost impossible, that I was leaving you..
I thought of all the yesterdays, the good ones and the bad..
I thought of all the love we shared, and how much fun we had..
If I could relive yesterday, just even for a while,
I’d say goodbye, then kiss you ‘til I saw that special smile..

But then I fully realized, that it could never be,
‘Cause emptiness and memories, would take the place of me.
And when I thought of all those things, I might miss come tomorrow,
I thought of you, and when I did, my heart was filled with sorrow. .
But when I walked through Heaven’s gates, I felt so much at home.
When God looked down and smiled at me, From His great & golden throne,

He said, “This is eternity, and all I’ve promised you.
Today your life on Earth is past, but here it starts anew.
I promise no tomorrow, but today will always last,
and since each day is the same day, there’s no longing for the past. .
But you have been so faithful, so trusting and so true,
Though there were some times you did some things you shouldn’t do. .

But you have been forgiven, and now at last you’re free,
So come and take me by the hand, and share my life with me..”
So when tomorrow starts without me, don’t think we’re far apart,
for every time you think of me, I’ll be right there – in your Heart..

https://www.youtube.com/watch?feature=player_embedded&v=hoPaHxUWA5o#at=16

THIS WAS THE LAST SONG PLAYED BEFORE THE SERVICE STARTED.

St Joseph’s Lilies…

Someone phoned Colin and told him it was okay to bring the boys home…

My friend Judy arrived. I can’t remember for love or money what she said. I do remember the comfort I felt from her presence. The boys arrived and we group hugged. I remember thinking “how calm they are”…

I took them through to Vic’s room, the linen had already been changed and the room tidied. One would never say someone as precious as my beautiful Vic had died in the room a couple of hours earlier… Vic’s room looked the same as it would have looked if she was in hospital. As if she would be home within a couple of days or weeks … as thousands of times before.

We cried a bit. We spoke about her suffering being over. I could sense her gentle spirit.

Vic’s room was not a scary place to be. Esther said that it was a room of love… I was so scared the boys would not want to go into Vic’s room, that they would associate the room with death. My dad too died in that room… I knew I had to sleep in Vic’s bed (again) that night.

The minister and undertaker arrived at the same time. The minister had prayed for Vic so many times in her life…he knew her well. I always called him my “secret weapon”. On umpteen occasions he prayed the dying prayer and Vic would miraculously recover! This time it had not worked. This time he would pray the prayer for the dead…

The boys and Colin sat in on the meeting. We discussed the service and I requested that Vic not be referred to as the “deceased”. Vic had given me the order of the service, the hymns she wanted sung and the names of her pallbearers. The boys decided on Psalm 71 as the Scripture reading – it was Vic’s favourite Psalm and one of their favourites. It was easy. The minister, Bella, prayed and left.

The undertaker hauled out his I pad and within minutes he had scanned Vic’s and my ID documents. He showed us lots of photos of different caskets. We chose a dark coloured rectangular casket.

“Would you like flowers on the coffin?” he asked

“Oh yes” I said. “St Joseph’s lilies – lots and lots of them” I asked.

“How big must the bouquet be?” he asked

“The entire length and width of the coffin” I replied

“That’s a lot of flowers” he said. “The coffin is 2m long…”

“That’s far too big” I said

“Mommy will slide up and down in the coffin” one of the boys said….

“Don’t worry” he said. “We put in wedges so she would slide around”

“We want 2 metres of flowers” I said

“Can we add another type of flower” he asked

“White roses” the boys said simultaneously

“Do you want a viewing or an open casket” the undertaker asked.

“No! No-one is to see Vic the ways she looks now.” I said

The funeral was arranged.

Vic has left home for the last time…

My beautiful Vic sleeping peacefully 10.1.2013.

For a long time after Vic had breathed her last breath I lay next to her. I touched her face and hugged her close to me. Something I could not do in life as I may have fractured a bone or two. Everybody left me alone with Vic. I was so grateful for that precious time with my angel child.

I washed Vic and dressed her in her favourite pyjamas. It was so difficult trying to dress her limp body. Although I knew it did not matter anymore I was scared I would hurt her. Years of conditioning I suppose. I was shocked to see that a large part of her body had already discoloured. Her right hand shoulder, her back and the top of her legs were black and blue. When I washed her little body at 7am that morning, a mere 3.5 hours earlier, only her little toes had started discolouring… Her back was still so warm from the fever that had racked her body. Her hands, feet and face were cold to the touch.

I brushed her beautiful hair.

Then I realised that the boys could not come home until Vic had been “removed”. I phoned Siza to pronounce Vic and the undertakers and requested that they send their people to come and fetch my child. I lay with her for a further 30 minutes. I held her tight and cried for her. I just wanted to die.

Siza, arrived…. She was so matter of fact about Vic’s passing. She put cotton wool in my child’s mouth because Vic’s jaw had relaxed! I wish I never saw that!

Just before 1pm the undertakers arrived. I was torn. I did not want her to go but I could see that her beautiful soul had left her body. It was no longer my beautiful baby girl who lay in that bed. In death Vic looked like a stranger… yet I felt that if Vic left that room she would forever be gone. Strange…..

The undertakers walked into Vic’s room. They were so smartly dressed in dark suits, white shirts and red ties.

They hugged me and said “When you are ready… We can wait”.

I remember thinking “I look so ugly when I cry. These strangers can see me cry!”. I nodded and they wheeled in a gurney type “bed”.

They meticulously folded up the outer cover to reveal a plastic sheet. They lowered the gurney to the same level as Vic’s bed and took her from my arms…

Someone said “Be careful. She breaks bones easily…”

They lay Vic on this horrible plastic sheet and covered her in it. I wanted to die. I still want to die just thinking of it. My beautiful baby girl, who only deserved Egyptian cotton, wrapped in hard plastic!! They quickly replaced the cover and zipped it close. I think my sobs were driving them mad.

Vic looked so tiny on that darn gurney! Tiny and dead!!

Minutes after one my baby girl left home for the last time. Never again would she grace us with her presence. Never again would she shuffle down the passage, never again would we hear her laughter or her cries of pain.

Vic left home – forever.

I heard someone wailing – it was a terrible sound

11.1.2012 The last photo I ever took of Vic

On Thursday night I slept from 12 until 3.30. I woke up with a start, and it was Danie’s watch…. He was sitting on a chair next to Vic’s bed. Tears brimming in his eyes.

“I have been timing her breathing” Danie said. “Her breathing is shallow – every 5 minutes she takes a deep breath.”

“I read about it” I said. It is called Cheyne-Stokes breathing”

We sat in complete silence counting the shallow breaths between the deep breaths. I counted 25 breaths between every deep breath.

“It is changing” I said

My brother came through just before 5. “Why did you not wake me? I was supposed to be on duty from 4…” he said

“I could not sleep” I said

The three of us again just sat and listened to Vic’s breathing. She was motionless and her eyes were slightly open. Her feet, hands and arms were cold. The rest of her body was burning up with fever – 40+ degrees C. Her little toes had started discoloring.

At 7 O clock I washed Vic. I had started cutting open T Shirts so her little chest was covered. I was too scared to move her – scared that she would fracture and that it would cause her more pain. I put deodorant on her and baby powder. A light spray of Estee Lauder’s “Beautiful” finished off her beauty routine for the morning.

At 10 o’clock Lee had to leave. She had a meeting that could not be changed. She cried when she left.

I lay next to my beautiful child. My hand was on her heart and my head right next hers. I could hear her breathing becoming more and more shallow. Leon arrived. The three men stood at the bottom of her bed.

I whispered words of comfort and love to Vic – non-stop….

“I love you angel child… There is nothing to be scared off…. It is almost over baby! I love you so much” I repeated the words over and over again.

I could feel her little heart beating softer and softer under my hand.

“She is going” I said

Her little chest hardly moved. Her breathing was so shallow! And then it stopped! For a couple of seconds there was no movement. No heartbeat. No breathing. And then a tiny little flutter…and then nothing! Just nothing!!

I heard someone wailing. It was a terrible sound. It was me.

Part of me had just died.

“It is close”…

Tuesday 22.1.2013 – Tonight is the first night in a long time that I lay on my sofa, in my own TV lounge, watching Law & Order. I kept listening for the sound of Vic’s little feet shuffling down the passage…It is the first time since Vic’s death that I truly experienced the “emptiness” of the house.

The house has been so busy. In the days preceding Vic’s death the boys went to stay with friends and family. Vic’s suffering was too horrible for them to witness. I did not want them to remember life ebbing out of her. On the 15^th my brother arrived from the coast and my sister from a neighbouring city. I was in such a dazed stupor that I don’t remember them arriving. I fell asleep next to Vic with my head next to hers, and my hand on her heart whilst the minister was saying a prayer….

On Wednesday the 16th Leeann started staying with me. Danie, my brother, Lee-Ann and I took turns on Thursday night staying awake with Vic. The time still passed in an absolute maze of unreality. I knew on the 16^th that Vic would die by the weekend.

Vic was still able to communicate with her eyes. She blinked when I asked her a question and her answer were “yes”.

Thursday Dr Sue came to see Vic.

“It is close” Sue said.

Murky red urine dripped into the catheter bag…. Vic’s eyes no longer closed completely… Her eyes had “broken”… she was gasping for breath.

“We must increase the Buscopan” Sue said.

“I think I have heard a rattling sound once or twice” I said

“Yes” Sue said. “I can hear it clearly through the stethoscope”

Sue increased the pain medication as well as the sedation.

We decided to let the boys come and say their goodbyes… Someone, I am not sure who, went and fetched the boys from school. The boys walked into their Mom’s room. Their eyes wide and sad. They lay with her and whispered soft words into her ears. They softly kissed her and walked away. It must of been the hardest thing they had ever done.

I send Danie out to go find me a new blood pressure measure that fits around the wrist and would not hurt her little arms every time I took her blood pressure. (Sue had one…) I became almost obsessive in trying to ascertain where she was in her journey. Vic was very unstable – within minutes her blood pressure went from 150/123 to LO (too low to measure) on the machine. Her pulse was racing at 160 beats a minute.

I lay next to her with my hand on her heart. Her little heart was pounding against the palm of my hand. Vic was fighting with every fibre in her body to stay alive. I looked at my child and thought “If I have her admitted to the Donald Gordon ICU they may be able to save her…” but then I realized that it was futile. Vic was slipping away and nobody could do anything in the world to change that. Vic was dying and I was helpless. I could not save my child.

Category: Terminal Illness