Grief – Page 16 – Vic's Final Journey

Rest in Peace My Angle Child 22.1.2013

Where do I start? How do I begin a farewell when I still can’t believe you’re gone? How do I say goodbye to a part of my soul?

The day you were born I experienced this UNBELIEVABLE rush of love. I was smitten from the first second I lay eyes on you.

You came into my life and changed me forever. Over the years people have complimented me for being a good mother but I truly cannot take credit for that. You were born good, and great and amazing. You were the one who taught me lessons in life. I believe you are an angel God sent to teach me.

You taught me love. You taught me honesty. You taught me to love unconditionally. You taught me how to forgive and how to be strong. You are the strongest person I have ever known. You gave me strength when I was weak. When times were sad and tough you reminded me to be grateful for the small things in life. You taught me how to be myself. Most of all you taught me about life and how to live.

When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die you taught me it was more important to feel and grow like any other child than to have me hide you under my wing. It was so important to you to live. And that you did. You gave birth to not one beautiful baby but two! You mothered the boys the way you lived life – with a passion.

You are the bravest person in the world. You rewrote medical history. You defied death for so many years… You mocked bad news and a poor prognosis…

You made me so proud. You have always been my greatest pride and joy. At school you excelled as a pianist. As a mommy you were an example to all. As a dying person you were brave beyond words.

I’m not sure how I can live this life without you. You worried about me just as much as I worried about you. You told everyone how worried you were that I would not cope without you. You fought so hard to stay alive. You fought until you gave your very last breath. You did not want to leave your boys. You lived for your boys.

You often said you were scared people would forget you…

No-one will ever forget you. You made an incredible impact on the world. You left two monuments of your love and mothering skills. Your sons will honour you every day of their lives with their actions.

Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come. It is ironic that you were Stepping Stone’s first death…

Two weeks before your passing you started seeing angels. You saw Gramps, Uncle Dries, your father and Auntie Marlene. Then a week before your passing you said “My whole room is full of angels” You fought to stay alive every single day of your life. Eleven months ago you called a family meeting and told us that you had decided enough is enough. No more surgeries. No more hospitals.

Over the past 11 months you made your final wishes known. You planned your memorial service. You spoke to the boys about what was important. I personally got a long list of do’s and don’t’s.

Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body. But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!

The day you were born you filled my entire life. You were always my first and last thought. I feel numb and as if I am in a bubble. You will be happy to know that we have been surrounded by love and support. But it still feels as if the world should have stopped because you left it.

Vic, I miss you so much already and I don’t know if I can take this pain anymore. But then I think, how can I be sad when I know you’re in a better place? How can I be sad when you brought me so much happiness? How can I be sad when God is already working miracles through you? How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother? How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes? I thank God every day for the time we shared together.

Baby I promise you today we will be the support system for the boys you wanted. We love them so much. No-one in the world can ever take your place. We promise we will keep your memories alive. We will honour our promises to you.

So now we must bid you farewell. It is your time to run, free from pain and suffering. We will always love you. We will never forget you.

Rest in Peace my Angel Child.

The mention of my child’s name

by Kim Knapp

The mention of my child’s name
May bring tears to my eyes,
But it never fails to bring
Music to my ears.
If you are really my friend,
Let me hear the beautiful music of her name.
It soothes my broken heart
And sings to my soul.
~~~~author unknown

http://www.thefuneralsite.com/ResourceCenters/Poetry_and_Quotes/Children.html

Vicky Bruce 31.8.1974 to 18.1.2013

Vicky Bruce, brave warrior, beloved mother of Jared and Jon-Daniel Sadie, beautiful daughter of Tersia and Danie Burger, sister and friend lost her brave battle against Osteogenesis Imperfecta on 18 January 2013. Finally, you can run angel child! Your incredible will to live and your beautiful soul will live on in your amazing sons. They are truly monuments that will honour you forever. You are finally free and reunited with you Daddy, Moekie and Gramps.! Run Vic run! Love you now and forever baby!

Daddy don’t leave me….

Daddy don’t leave me…..

dead woman walking

Last night I had a discussion with someone who Vic loves very dearly. This friend of Vic has spent endless hours, days, weeks and months in hospital with Vic. She is actually the only person that has truly travelled this horrific journey with us. Vic has lived through many death sentences and reprieves. Lee has been around for at least the past 7 years of Vic’s journey. Vic has nursed Vic back to health many times and I know she cares deeply for Vic, her friend.

I discussed the various treatment options with her. Do I insist on having a stent fitted or do I request feeding tubes? Or do I go with Vic’s non-intervention wish? But if I comply how do I bring calmness and peace in Vic’s life? Vic is no exception to the rule…As Bella pointed out last night even Jesus of NAZARETH feared death….Fearing death is as natural as breathing is to us.

Last night I decided no sedation. If I allow sedation, which is against her wishes, I will silence Vic’s voice, her fears and her tears.

Dr Sue says the bleeding is from the abdomen. Her Oesophagus, throat and mouth are covered in a mass of sores from all the vomiting. Her breathing is shallow and her heart rate weak but very rapid. Her blood pressure is dropping and her circulation is poor. The liver is very enlarged.

We are past the point of no return. Vicky is dying and only a miracle can save her. There is no operation, no magic medication, and no nothing that can save her.

Today I again witnessed her anguish and phenomenal will to live. I saw Vic, in my mind’s eye, Vic being escorted, in deadly silence down a long dark passage. Her family and friends were escorting her on her final walk into the chamber of death. I clearly saw the fear in her eyes and I could feel her little body trembling with fear. I heard a voice saying “Dead woman walking…”

I saw her walk into an execution room, being strapped down and the needle being inserted into her little arm. I was the head warden and my eyes were flitting between the clock and a telephone…Would there be another reprieve??

It is so cruel. For all of us. Why do people linger? Why don’t we all just go to sleep and never wake up? Or die in a car accident? Why this suffering??? I want to go to sleep and never wake up. Life sucks!

Vic is on a mild sedation. She is more calm and peaceful than she has been for a couple of weeks. She woke up this evening and had dinner…half a hamburger!! My little take-away queen!! She only vomited at 11.30 pm so she managed to actually keep down the food. She has passed no urine today.

She sobbed when I told her the boys had covered their school books…”I want to do it for them!” She wailed

“I have let down my boys. I always cover their books…”

“Oh Jared, look! Oupa Tienie is standing behind you…” It really spooked the boys. Tienie died on the 5^th of November 1999…

I wish Vic was married. I wish her biological father was still alive! I wish the decision was not mine!!!

Tomorrow I will ask that the sedation be increased. I will silence my child’s sweet voice. I will also silence her tears and fears.

“Dead woman walking…”

Gramps was here…..

Monday 7.1.2013 was a crazy day. Vic was not in a good space.

Angela, Vic’s BFF came to visit. She is not only beautiful but also a calm and serene person. She radiates goodness. Angela being here gives me some time because I really trust her. I am able to get some essential chores done knowing that she is keeping an eye on Vic.

“Gramps was here” Vic said.

“How is he?” I asked

“I don’t know. He just came to tell me how much he loves us all…” Vic replied

My Dad forgot how to breathe on the 15^th of May 2011. He died in our home (in the very same room as Vic) surrounded by his beloved family. At times he was a stranger in the world. Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom. Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill. At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.

“He has come to take you by your hand Sweetie…” I said

“I KNOW Mommy” she said impatiently.

Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers. Of course, Vic immediately got a bee in her bonnet and had to get out of bed. Always the social animal!

Esther arrived and Vic burst into tears when she saw her sister.

“I am so scared Sis” Vic cried in her sisters arms.

Esther has become Vic’s “coach”. She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for. She holds Vic and dries her tears….

Danie took the boys for a haircut and new school uniforms.

In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit. It was touching when she spoke with Vic and apologized for coming to visit too late. Vic was sleeping and not aware of the visit. Joanna left with tears streaming down her cheeks. She left a little gift for Vic

“I wrote your name in the sand

But the waves blew it away

Then I wrote it in the sky

But the wind blew it away

So I wrote it in my heart

And that’s where it will stay.”

Siza arrived and told me that Sue would be in tomorrow morning to assess Vic. She said Vic’s colour is very poor and the circulation in her legs bad. Siza is of the opinion that the most humane thing to do for Vic would be to sedate her… Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.

I am torn. My poor child’s anguish and pain sears through every nerve ending in my body. Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end. But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die. Sedation can end her emotional anguish, but deprive us of last words.

When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries. He came to visit. I have thought of him the whole day….”

Dries is a dear family friend who died last year…

In the evening Judy (Dries’ widow) popped around for a visit. When I told her that Vic had seen Dries she burst into tears. She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…

I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…

We laughed.

Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit. Bella, a dear friend over the years, spoke to the boys with so much compassion. He grew up in a home with a mother who was ill. He said that the congregation has never stopped praying for us as a family. He said the congregation carries us in their hearts. (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)

We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family. Someone stifled a little sob. There was absolute peace and a Godly presence in Vic’s room.

Rest in peace dear friend https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/

For some dying is hard work https://tersiaburger.com/2012/07/18/487/

Quiet waters of peace

Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”

“Oh…” she said. “Why not? I think I will…”

We laughed.

In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.

Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!

In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”

I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.

The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.

Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.

Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”

Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?

I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.

I am babbling.

“Oh…” she said. “Why not? I think I will…”

We laughed.

Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.

Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!

“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!

I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.

I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.

I am babbling.

” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care. You feel so alone you just sit and cry…every second you wish you could die.”

Valley of Death

January 2013. Today was a special day.

Boys lying with Vic before Chris' arrival — Boys lying with Vic before Chris’ arrival

Yesterday Vic asked me to contact her minister. Chris arrived at our home at 9.30am. We all sat in Vic’s room whilst Chris read Psalm 23 and prayed for Vic who was walking through the “valley of death.” She prayed for Vic to find peace and acceptance of her situation.

Chris then served Holy Communion. Vic, at first, did not want Jon-Daniel to partake in the Communion. Chris explained that a child having to be confirmed before they are allowed to partake in Communion is a man-made rule. I pointed out to Vic that it would be very special if Jon-Daniel could have his first Communion with her… Vic agreed.

It was so special.

I was filled with deep gratitude that we as a family have the opportunity of making memories every day. Today I am particularly grateful that Jon-Daniel will always carry the memory of his first Holy Communion with him. Even if his mom does not attend his confirmation he will remember that he took his first Holy Communion with her.

Vic and Jon-Daniel after taking Communion

For the first time in a long time I was grateful for Vic lingering death. I am grateful that Jared had the opportunity to tell her that she is a legend and that she will always live on in so many people’s minds and hearts. That Stepping Stone Hospice is her legacy….

Dying isn’t a science. There is no methodical process of coming to terms with death. The reality of what is busy happening to Vic is frightening and overwhelming. Earlier this week, when I gave one of the boys permission to go out, Vic said “See Mommy, this is why I cannot die. I don’t know if you will be strict enough with the boys…”

Vic is desperately clinging to life. Vic is afraid of losing control of her bodily functions and becoming a burden to us. Vic is afraid of the act of dying.

The rest of us are scared because we want her suffering to end. We know we will experience terrible guilt afterwards… Even as I am typing I KNOW I will second guess everything I did for Vic and every decision I ever made regarding her medical care. This is just the way it is…

Angela and Tracey visited today. The visits are so exhausting for Vic and yet she did not want them to leave. Every time they say “I must go…” Vic will pout and say “just stay a little longer…”

The weight is just falling off Vic. She managed to keep in a mug of diet “Cup of Soup”. Small mercies!

Lelani picked up the new morphine script from Dr Sue. She made imprints of the boys’ hands for Vic… She massaged Vic’s little feet. Jon-Daniel and I swam and Jared went with his girlfriend and her parents to a day resort. Danie picked up the script from the pharmacy and washed his own motorbike. (First time in 15 years….he always has it done!)

A normal day in the life of a family walking through the valley of death…I don’t want to forget any part of it.

VICKY – A WOMAN OF COURAGE!

What makes Vic strong?

Her heritage…

What makes Vic weak?

Her fears…

What makes Vic whole?

Her God…

What keeps Vic standing?

Her faith…

What makes Vic compassionate?

Her selflessness…

What makes Vic honest?

Her integrity…

What sustains Vic mind?

Her quest for knowledge…

What teaches Vic all lessons?

Her mistakes…

What lifts Vic head high?

Her pride…

What if she can’t go on?

Not an option…

What makes Vic victorious?

Her courage to climb…

What makes Vic competent?

Her confidence…

What makes Vic beautiful?

Her everything…

What makes Vic a woman?

Her heart…

Who says she needs love?

She does…

What empowers Vic?

Her God …

Tomorrow may be better than yesterday

Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating. Last night the nausea was absolutely relentless. With no food in her stomach Vic vomited blood. Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night. I cried and slept in her bed with her.

Today Sr Siza tried to put up an IV drip. Vic has absolutely no veins left that are suitable for a drip. The sub-cutaneous driver is back up. At this stage of the game the risk of cellulitis is less than the need for pain and symptom control. We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron. “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.” http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital. Vic refused.

On the 1^st of January 2013 Stepping Stone Hospice and Palliative Care started operating. It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.

“Sisters by Heart”

Vic lost the Christmas gift she bought Esther. It is not the first time this has happened – Vic previously bought Esther a “Sister” fridge magnet and mislaid it somewhere…

Vic has spent a lot of time sorting out some last things – double checking her insurance policies, photo albums, writing cards for the boys to be read on the first Christmas, first anniversary, final school exam… She has been going tick, tick, tick…Oops Outstanding item: Esther’s gift!

I have searched the house and not found the sentimental nick-nacks Vic bought Esther for Christmas. I have driven around and looked for replacement gifts, but to no avail. So yesterday Vic said to Esther “Sis, I have to replace your Christmas gift… I cannot move on before I do that…Mommy is taking me to Eastgate tomorrow. I know I will find it there.”

Esther, who has a superb sense of humour, said “I won’t let you die before I get my present…What time are we leaving tomorrow?”

Early this morning Vic was dressed and ready for the excursion. At about 11am we set off shopping (after a hefty pain and nausea injection…) At the second shop we struck gold! (I actually found the gift she was looking for.) Vic had the salesperson wrap it with Christmas gift wrap. She is a stickler for “attention to detail”

Mission accomplished we went to a restaurant for lunch. As usual Vic agonised over the menu. She wanted a salmon dish with cream cheese – No salmon…. Arghhh! She settled for a sandwich and coffee.

The gift Vic bought was a Willow Tree figurine set of two girls holding hands. “Just like we lay and chatted last night Sis…”

Sisters by Heart

Celebrating a treasured friendship of sharing and understanding

“I’m very close to my sisters, and the friendship and support of other women has always enriched my life. I also realize that there are friends or other relatives that may not be blood sisters, but share this same type of closeness.”

Vic and Esther are step sisters. There is no blood bond, but they are bound by their deep love for one another. Esther has been an absolute pillar of strength to Vic and the rest of the family. Daily Esther sends Vic beautiful text messages. She brings Vic flowers from her garden. She lies next to Vic and listens to her babbling. Esther is the sister Vic never had.

Needless to say, Vic did not handle her lunch well and after a visit to the toilet we left. I could see her heart beating like crazy in her neck. People looked at us as far as we walked. I realized with a shock that it is because Vic obviously looks ill and shuffles like an old person. I look at her and I only see a beautiful young woman; my baby girl and the mother of my grandsons.

Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.

“Something is wrong mommy.”

This evening Vic double checked with me whether I remembered which hymns had to be sung at her memorial service. She cried when she (again) named her pallbearers. “Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”

Vic asked that I get her minister to come and administer Holy Communion to her this week.

The whole situation is so surreal. I find it impossible to believe that Vic may actually be dying. She is so beautiful and her mind is crystal clear! I think Vic is just caught up in the Hospice talk. Maybe I am in denial. She has not vomited blood for two days. That is a good sign. Google says her heart rate can go up to 250 and Vic’s HR is only at 120 and occasionally at 155.

Oh dear God please grant my child peace. Please grant us all peace.

Celebrating a treasured friendship of sharing and understanding

Happy birthday to you…

I hardly received any 2013 New Year’s wishes. Normally I would receive so many beautiful wishes but this year I received messages for a” peaceful New Year’s Eve filled with laughter and good memories…”

Last night my sister said in a text message “what tears do 2013 hold for you? Maybe it should stay 2012”…

Jared went a friend’s home; Danie went to bed early – he is coming down with flu; Vic was asleep so that left Jon-Daniel and I. We watched Comedy Central and had some good laughs waiting for 2012 to end.

Jon-Daniel loves making his Mommy laugh. In a way I suppose he uses humour as a coping mechanism.

“I think we should wake Mom up at 12” I said

“Okay…Let’s sing Happy Birthday to Mom….” He said with a twinkle in his eyes.

As the hooters and sirens started going Jon-Daniel and I sneaked into Vic’s room and sang “Happy Birthday to you…” Vic opened her eyes and said “What is happening?” and immediately fell asleep again.

The joke was on us.

Today was a quiet day. The boys spend some wonderful quality time with their Mom. Danie remained in bed until almost 4pm as he is feeling lousy from the flu. We all drifted in and out Vic’s room. In the afternoon Jared went for a swim. Vic went outside and spoke to him.

Jared had some questions and she patiently explained to him what an “Executor’s” duties are. She explained why Leon and I were the Executors of her will and the Trustees of their Trust. (I got some lovely photos of Vic chatting to the boys!) Vic tried to show Jared that she could whistle through an acorn… Jon-Daniel taught her! As much as she tried she could not get a sound out of the acorn. To everybody’s laughter she said “But I can do it!”

We convinced her that she should get onto the inflated lilo. The cold water would reduce her body temperature and the sun would be good for the jaundice. Very reluctantly she got onto the “non- life-saving inflatable device”. I got into the pool with Vic.

Esther and Yuri arrived and she made a dash for her camera… later Leon and Henk arrived. The boys swam and laughed and played…

It was a wonderful day filled with glorious memories. We laughed and joked and eventually ate. Esther lay with Vic and they spoke about where Vic was in her journey.

It was a special day.

I think friends and family don’t know what to wish us…How do you say “Happy New Year” to a household where death is knocking on the door? I would not know what to say to us if I wasn’t me…

But from our home to yours: We wish you a great 2013. We hope that 2013 is filled with laughter, good health, abundance and time to do some good every day. We thank you for your love and support. Thank you for your prayers and words of encouragement. You have been such an amazing source of comfort to us.

Thank you Hospice for giving us the means to have these special memories! Thank you to the manufacturers of Morphine, Pethidine, Stemitil and Buscopan…

Jon-Daniel teaching his Mom to whistle through an acorn... — Jon-Daniel teaching his Mom to whistle through an acorn…

Vic trying to whistle through an acorn... — Vic trying to whistle through an acorn…

Hi Sis, you know I love you.... — Hi Sis, you know I love you….

I read in the Bible that Heaven is a great place…”

Dr Sue putting up the drip. "If we knew you were going to take a photo we would of had our hair done..." — Dr Sue putting up the drip. “If we knew you were going to take photos we would have our hair done…”

Sue came in this morning and managed to find a vein. The vein held for the Perfalgan and she also managed to get a bag of saline into Vic. This will hopefully rehydrate her. It has been a rough 24 hours with so much vomiting. The poor child…

We hooked the saline onto a hanger and it now hangs from her ceiling. Leon, SiL, put a hook into her ceiling and we have suspended the drip from it. I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan. Tomorrow Sue will try to find another vein.

I suggested that Vic is mainlined or a stent is fitted. Sue agreed that it would certainly make life a lot easier. It would be easier to administer all Vic’s IV medication. Vic said “Sorry Mommy, no hospitals…”

Vic's drip suspended from the ceiling — Vic’s drip suspended from the ceiling

Her heart rate, even whilst she is sleeping, is constantly above 110.

The IV medication immediately helped. Vic’s breathing is better. Vic has not vomited since 11 am this morning! She even managed to have a bit to eat tonight.

When Sue left today she asked me what is holding Vic back. Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…

Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed. That is what the blood tests show.

What is holding Vic back? Sue says death happens when one relaxes completely and deeply! Vic’s adrenaline levels are preventing her from relaxing and dying.

All I want is for my little girl to find peace and her suffering to end.

Esther and Leon brought dinner tonight and just visited. Vic even got out of bed for a while and had a laugh. It was great being surrounded by the love of the family.

I wish I knew what to do to make Vic accept the inevitable. I wish with every fibre of my body Vic will find peace. That she will find the strength to let go…

Vic has been ill for such a long time. Maybe she just thinks this is how life is. Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain. To play with her kids, go out for drinks or a movie with a friend.

On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….

Here On Earth …, There In Heaven…

Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours

Obed Akuma

Baby Girl it is time for Heaven… You have to let go!

Sweet 16

On the 26th of December 1996 Jared Colin Sadie was born. He was a beautiful, healthy baby boy. I cried with joy when I first saw him and that first “rush of love” hit me.

Vic fell pregnant 6 weeks after she got married. When the kids asked us whether they could get married I had a LONG talk to them about NOT having babies. They both said “We know…” I explained the dangers of passing the Osteogenesis gene onto a next generation of innocent children.

I will never forget that dreadful Sunday night when they told us that Vic was pregnant. My heart stopped. I sobbed in the shower. For the first time in her life I feared for Vic’s life.

Vicky refused flat out to have an abortion. She said the baby a gift from God. And so he was….

Jared is an amazing young man. According to our government he is now old enough to vote, get his learners licence for a motor bike and work… I look at him and I see a little boy who was going to be a stuntman; a young child helping his Mommy cook; get out of bed; walk down stairs…

Both Jared and Jon-Daniel are loving, compassionate monuments of Vic love and mothering.

Jared is a “computer nerd” with a wonderful personality. He has a keen sense of humour and wise beyond his years. He is fiercely protective of his mother. A very dear Saudi friend of mine says Jared has a “white heart”. (Albak Abyad” an Egyptian expression that indicates a person with a good heart. It’s literal translation to English is “You have a white heart” as opposed to being a bad person with a black heart).

Vic, once again, managed to get out of bed. She was falling asleep in her chair, but managed to visit with most of the guests who came, ate something and left. Laughter and joy reverberated through the house. Vic was the proud mother. It was a happy home for the day…

The boys have a hard time coming to terms with the stage that Vic’s illness is at. Jared’s first words when he comes back into the house after Siza leaves is “What did Hospice say?”. He researches every symptom and sends me links on liver and renal failure. He is an expert on Osteogenesis Imperfecta and was 9 years old when he spoke about his Mommy at a Public Speaking lesson at school. The subject was “My Hero“. We all expected him to speak of Nelson Mandela, but he chose to speak about his Mom. (His brother followed suit two years later)

He said that his mom is his hero because despite the fact that she is so ill she still looks after them…

Jared and his Mommy

Jared had a wonderful 16th birthday. He was absolutely thrilled with the Docking Station Vic had bought for him. As soon as he gets his license we will buy him a motorbike.

She ain't heavy - she is my mother — She ain’t heavy – she is my mother

Yesterday was a milestone in Vic’s life. I fear it may be the last she will reach. It is clear that Italy will not be possible.

I was so tired last night that I slept through Vic’s 23:31 and 03:00 “Vomiting” text messages…. Vic refuses to use the intercom! She feels it is “disrespectful”.

As much as Vic resents the fact I may have to bring in a night nurse.

I remember Vic’s 16th as if it was yesterday. Now she is a grown woman with two teenage sons – nearing the end of her tenure on earth

https://tersiaburger.com/2012/08/27/kidney-stones-on-the-move/

https://tersiaburger.com/2012/10/10/i-am-taking-a-break-from-your-blog/

https://tersiaburger.com/2012/07/07/chronic-illness-versus-terminal-illness/

https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://tersiaburger.com/2012/10/16/and-the-winner-is/

being – reposted

One of my favorite poets posted this poem today. It touched my heart and I wanted to share it with you. Thank you Aarthi! http://sickocean.wordpress.com/2012/12/26/being/#respond

for someone we love
we can be
the best of the needs, of love of life

what beautiful essence of life
is hidden in the moments when
you smile not for your own but for someone else

your love forever increases in amount
you grow all the more still and calm
you forgive and forget the greatest of harms

its the serenity of love when
you are holding someone to save
in empty moments their voice you crave

and when indeed life offers you a chance
you run away and hug them
singing to their heart your precious song

being human
is to love someone
so much beyond yourself

perhaps to an extent that
you forget your own pains
and their wounds make you cry…

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The mention of my child’s name

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