Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
Today was an amazing day. I desperately miss my beautiful child.
I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan. I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself
“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”
I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done! I cannot undo the lie or my decision not to go… I will however confess if I see him again.
My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed. There was a comment on one of my first posts…I reread the post and the next and the next and the next… I reread every one of the 335 posts I had written.
Other times, when I reread any of my journal entries or blog posts, I teared up. Today I did not. I was filled with relief.
I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity. The more I read the more I realised how selfish I was being. I took cognisance of the fact that in the early days of my blog I was careful with my words… Today I realised how much was never written. I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.
Today I was grateful that her suffering was over!
Does that mean I am “over” the death of my child? No! No! No! But I am at peace today that Vic is free of pain…
I missed her today as I will tomorrow, the day after tomorrow, next year and forever!
Vic and I
23.5.2012
At about 01:00 this morning Vic came into my room and got into bed with me. Her tummy was cramping badly and she was scared. She just lay with me for a long time, sobbing and talking about her fears.
E.H.Chapin said: “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”…
Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…
She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…
Today was a day out of hell for Vicky. She is deadly pale – she actually has a ghost like appearance. She was so ill that she was unable to take pain medication and now her pain is out of control.
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed with pain when I changed her. Seeing my child sick and in pain, every day of her life , kills me. I am dying, painfully slowly from my child’s pain. https://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/
12.8.2012
Vic is still a very sick little girl. The fact that her pain is better controlled does not mean that she is well. If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death. This week Vic’s amazing resilience again amazed me. She is strong beyond comprehension!
My heart bleeds for her that her fragile body has once again failed her incredible will to live. It is clear that she is merely holding onto life, as she knows it, with her fingertips……
I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved. Vic will never function on any level again. She is confined to bed relying on medication to keep her sane. Maybe she will have a good couple of days here or there but her sentence has not been commuted. https://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/
Schedule 6 medication – 28 days supplyRest of Vic’s medication – decanted
21.8.2012
Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.
I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!
This evening she asked if she could have her injection a little earlier. Jared is going back to theatre tomorrow morning to have his stent removed. “Mommy, I need to try and sleep so I can be with my son tomorrow”
It is as if her wish triggered an avalanche of events.
Vic has been projectile vomiting since, and the perspiration is pouring off her. Her heart is racing, and her blood pressure is all over. Her abdomen is so distended and extremely tender on the abscess side!
Vic will not be at her son’s side tomorrow when he is readmitted to hospital.
Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next. When she has a good and busy day, like yesterday, she pays the price for weeks. Vic has not been out of bed today. She is deadly pale and drawn.
It is hard for her not having privacy. Vic is embarrassed that I hold her hair or wipe her face when she is vomiting. Yet she needs me with her….
We are however in this together as a family. It is a rough journey for everyone.
“I am so sorry Mommy…” …it echoes through my heart.
We have already had so many “extra” years. But the fact remains that Vic is ill. Today she is more ill than yesterday or even last week or last month. It is not an UTI causing the pain and fever. Her pain control is good enough to mask symptoms. Waves of severe nausea and cramping remain…
I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another…. I have read that it feels “uncomfortable”. It is called terminal agitation.
There have been times in the past couple of months that all Vic can do is lie in bed and breathe. Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement. There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milk shake. She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!
Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused. She is on the down ride hurdling to who knows what stage of her journey.
Vic is so sad that she is unable to actively participate in her children’s lives. Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”. https://tersiaburger.com/2012/10/21/vics-roller-coaster/
Mothersday 2012
14.11.2012
Vic had a night out of hell! The nausea was vicious and unrelenting. Pain reduced Vic to a whimpering bundle of human flesh.
Vic’s palliative Care physician, Dr Sue, visited Vic this morning. I think she was a little taken aback by Vic’s condition.
Sue is an amazing person. She was so gentle with Vic. Vic’s heart rate is fast and her blood pressure is 101/58. Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly. Her oxygen saturation levels are low – 90%.
Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.
Vic is having a lousy day. She is exhausted and very swollen. Despite the injections she has been nauseous all day. This evening she had another vomiting bout. Tomorrow we will see Dr Sue again. Just maybe there is a 3rd anti-nausea type injection available
Vic also complained of a terrible “acidic” feeling.
Hospice has just fitted a subcutaneous driver – again. Vic’s pain has spiralled out of control over the past couple of days.
Vic was in absolute excruciating pain during the night. She battled to breath.
“Help me Mommy! I can’t stand the pain anymore…”
I lay next to her and put constant pressure on the area that hurt most. It was just below her ribcage – liver. “Oh Mommy, it is so sore. Can you feel how sore it is?
As a little girl Vic used to believe that I could “feel” her pain…
“Feel how sore my toe is Mommy…”
As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease. It cannot be so I look for a new spot on her bum to stick in a needle. https://tersiaburger.com/2012/11/27/mommy-can-you-feel-how-sore-it-is/
3.12.2012
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
12:42am and Vic is sleeping peacefully. She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!
Vic’s legs are growing very weak. The cellulitis on her arm has worsened despite the antibiotics. It is now oozing pus. Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics. She had a violent vomiting spell just after she took her antibiotic tablets tonight. It is very difficult for her to keep tablets and food down. Despite the six-hourly anti-nausea injections she has…. And of course there is the problem of the poor absorption.
Vic’s arm is very painful. The antibiotics have not started working yet. Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization. Obviously Vic need intravenous antibiotics and her tissue is too poor….
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.
“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded
I lay behind her back, gently holding her whilst the tears wracked through her little body.
“I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried
Vic has been vomiting non-stop. The acid has burnt the inside of her mouth. Her derriere is so lumpy, black and blue from the constant injections. Sr Siza popped in. She examined Vic and started drawing up a Clopamon and Morphine injection.
“Please Sister, not my bum. Please do it on my thigh.”
Vic no longer has an appetite. She is sleeping at least 20 out of 24 hours. Vic is very warm to the touch and appears flushed. The thermometer reflects a temperature of 37 degrees C.
“Do you understand what your body is telling you Vic?” Siza asked
Jon-Daniel telling his Mommy he received his honours blazer
2.1.2013
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” https://tersiaburger.com/2013/01/02/sisters-by-heart/
Jared just quietly sitting with his mommy
1.7.2012
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
And then on the 10 th of September 2012 I blogged the words that I want to repeat today…
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
On the 1st of January 2013 we started Stepping Stone Hospice & Care Services in my suburb. We operated from my home with one highly skilled Palliative Care Nurse, a Palliative Care Doctor, a network of caregivers, a four women steering committee, one car and a lot of enthusiasm and energy.
Vic was our first death. Stepping Stone was borne out of her pain and her desire to “pass it (Hospice Care) forward”. Many years ago, I promised her that I would start a Hospice in her honour…. It would be her legacy. When Siza looked after my Dad in his final days we “connected”. She is a beautiful, compassionate, efficient person. She has a gentle yet confidence inspiring disposition, and she delivered on her promise to Vic on day one. When she came to set up the subcutaneous driver the first time she promised Vic that she would take care of her pain needs. This she did to the best of her ability.
I blogged on this new lease of life Hospice gave Vic. We have at least two and a half wonderful months where Vic was able to “live”… go out for milkshakes with her boys.
We have been so blessed. Six weeks ago we were able to move into an office on the premises of an amazing charity organization called Amcare. We now have a donated desk, laptop and printer. We have quite a lot of donated equipment such as wheelchairs, walkers etc. We only have one dilapidated chair but our work is in people’s homes not in offices!
People have generously donated second-hand clothes which more than provides for the pain medication that is needed to treat our indigent patients. Through generous donations by a couple of people we have managed to pay Siza’s salary, fuel and cell phone costs. We have been able to buy a software program that will allow us to invoice the medical aids, of patients, that have terminal care cover.
Today Trix received a phone call from a lady, our of our second-hand clothing benefactors, who asked whether we could meet with her brother….he wants to donate a building to Stepping Stone Hospice!!
Our God is a faithful God. We have not advertised nor marketed aggressively at all.
I am speechless with the wonder of people’s generosity and love!
Please pray that this will indeed happen!
Vic, your legacy will live on. Thousands of people will be able to live and die with dignity because you had a dream. I love you Angel Child. I know you are our guardian angel!!
Many years ago I had to travel to Paris, on business, with two male clients. The one middleaged man, advised me that his wife would accompany us. I thought it was strange but did not give it much thought. We had to attend the Eurostatory exhibition. It may sound like fun, but exhibitions are hard work!! We also had to travel to a neighbouring city to visit a manufacturer of products… One arrives at the exhibition at 9am and you leave at 5 pm. It is a lot of slow walking and standing.
Add the frustration of the Paris traffic and commuting between the exhibition centre and hotel….
Dinner is followed by falling into the bed and just “dying”…
My first thought was that this was a jealous wife who did not trust her husband on a business trip with a female colleague… the only other reason would be that she thought it would be a very sociable trip, lots of sightseeing and shopping. Oh what the hell – as long as I was not expected to keep her company or take her shopping!
About a week before we left I found out that the couple had lost their son a couple of weeks before in a car accident. I felt sad for them, made a phone call, asked my secretary to send flowers. My life carried on…
I met the client and his wife at the airport. Their eyes were so incredibly sad. It made me feel very uncomfortable. I remember telling them that the trip would be “healing”… They nodded and said nothing.
We arrived in Paris on the Friday morning. I told them that as soon as they has unpacked and freshened up we would start our adventure. We would head out to Sacre Ceour…one of my favourite places!
Our first stop was the Sacre Ceour Cathedral. We entered the cathedral and everyone was in awe of the beauty of the cathedral. They asked why people were lighting candles. I explained that people were lighting candles for loved ones who had died.
The husband and wife walked off wordlessly and went to light a candle for their dead son. I was touched and sad for them.
Over the years we have become ‘distant’ friends…we stay in contact, we exchange notes on our grandchildren, he phoned me when his daughter was diagnosed with cancer. We cried together. He said “You are the only one who will understand my fear…” He knew Vic was ill.
I saw him today for the first time in about 18 months. We spoke about business and a potential co-operation on a new project. He said nothing about Vic. He asked no questions.
Eventually, I said “Vic died three months ago you know…”
He said “I heard. I tried to phone you, but you did not answer your phone.”
“I spoke to no-one” I said
“She is in a better place you know” he said.
“So let’s talk about how we are going to tackle this project” I said
I remembered the sadness in their eyes. I remembered all the candles they lit for their son. I remember not understanding their grief.
Today was a particularly bad day. For the first time since Vic’s memorial service I attended a Church Service. I dreaded the arms of comfort and gentle words of sympathy that was inevitable. Danie went with me. As we walked into the doors the arms were there…hugging and patting! Our entry caused a little stir among the congregation..
Danie took my hand and led me to our old place in the pews. People actually got up from where they were sitting to come and say “Hello” and “I am praying for you”…. Tears just ran down my cheeks and I COULD NOT stop crying! All I could see in my mind’s eye was my beautiful, precious child’s coffin in the front on the church – surrounded by white candles and St Josephs lilies.
The worship team started singing, and I could not even see the words on the screen through my tears.
As the service went I calmed down. I kept telling myself to “get a grip” which I eventually did.
After the service I cried in the embrace of my minister, church friends and acquaintances.
This evening I opened my emails and found a beautiful email from Jane@ http://johannisthinking.com/. I wanted to post some of it with the beautiful picture and went into her blog to copy her blog address when I found this amazing poem that I am going to share with you.
Jane’s writes in her Email:-
You are NOT alone—-there is LIGHT all around YOU! When I found this…I thought….Yes, this is Tersia! …and your daughter is surrounding YOU with love and light! BELIEVE it!You deserve to live in the LIGHT…..and it is NOT wrong to be happy….Vic is at peace and living in the LIGHT……and one day you will find her again…….until then…be gentle to YOU…..what would you tell her to do IF the situation was reversed? What if you were the ONE who had to leave this Mother Earth ? What would you say to your daughter? You say you “two are ONE”—-and I do believe it is true——— so speak to your inner child as you would speak to her! WE ALL NEED YOUR VOICE!
I cried again. I am so grateful that the goodness and the light that surrounded Vic and radiated from her, is seen by the world. Thank you dear Jane for telling me. Thank you for your words, your poetry and above all the Angel of Light. Thank you for caring!!
Dedicated to Tersia Burger***between the deep sighstears fall one by one
ridding the pitchblende
ever so slowly they formquietly…silentlydescendwater tearscascading
will they ever endwater crystal healersnature taking care of youhelping you transcendfreeing youuntil…you find yourselfhome again…
ice-kaleidoscope (Photo credit: JeremyO\K)
So, today was emotional but healing! I was surrounded by love and compassion. For the first time in a long time I did not feel isolated in my grief.
So to every one who comments and emails; I thank you for your love and support in my journey of mourning my child. For many years I have had a fear of allowing people close to me – I truly fear that they will betray my trust and friendship. I KNOW I must allow people close
to me. Blogging is allowing me see that there is kindness, goodness and unconditional caring out there….
Ah, I have been surrounded by angels this week! Yesterday my friend Trix, just popped around with a beautiful bunch of roses…yellow and orange. Vic would have loved the flowers and the gesture! Vic’s eldest sibling too dropped off a beautiful bunch of flowers.
Yesterday we burnt candles for Vic. We all cried. We all desperately missed Vic.
Trix is a “new” friend. She is part of the Stepping Stone Hospice steering committee. Trix is funny, fit, bright, dynamic and very intelligent! She is absolutely amazing, and no amount of effort or work for Stepping Stone Hospice is too much effort. Trix posts these amazing comments on Facebook throughout the day. Her posts are philosophical, funny and radiates her love of life and people.
Trix has become such an important part of my life in a short period of time. She has a way of saying “Do what you must do to cope with today…” She is not the huggy/kissy type friend… Under her chirpy exterior lies one of the most positive and honest people I have ever had the privilege of knowing.
Now my friendship with Trix is one of the few goods things that came out of Vic’s illness… If Vic had not dreamt of a Hospice and Trix had not lost a husband to cancer in a Hospice In-Patient unit we may never have met…
Another new friend is Wendie Deacon http://deaconfamilyblog.wordpress.com/an-angel-named-vic/ Wendie is a nice person who is truly gifted. Wendie has challenges of her own and the way she has handles these challenges are so brave! She messages and says such beautiful things of Vic… That on it’s only is enough to truly endear her to me. Wendy wrote a beautiful poem for Vic… Thank you dear Wendie for honouring Vic with your words!
If only Vic could read Wendie’s beautiful poem… Do you think angels can read? I wish Vic could read these words…
Today I read a very moving eulogy that Denise, one of my blogger friends, posted. It is a eulogy that she wrote and presented at her beloved son’s funeral.
I identified with her emotions and every word she wrote. I would like to share Denise’s words with you and also my eulogy with which I honoured my brave child.
Denise says:” I’ve added a page with Philip’s eulogy. It was my last gift to him. As I wrote in the introduction, I’m posting it so you can know him a little better. I’ve just re-read it, and I remember reading it out loud, with Phil and Natalie beside me. I remember that I’d spent the last two hours in my chair, non-stop sobbing. I remember my cousin Maria leaning over and saying, “If you don’t stop crying you won’t be able to read.” I remember my voice clear and strong. And when I was done, I remember being told, “I feel better because I know you’re going to be all right.”
Me and “all right” didn’t belong in the same sentence. But there it was. And here it is; I hope you’ll take a look.”
Much of the days, immediately after Vic’s death, is now a distant memory. The emotions that I did record are hazy now. I floated on a herbal tranquilizer cloud… I cannot remember who all was at the funeral. I remember who wasn’t… I looked at the January 2013 photos this week and saw that her second eldest sibling did come and say her goodbyes. I now vaguely remember her little girls being here, but I actually don’t remember!!
When Vic planned her memorial service she asked that I deliver her eulogy.
Friday, Saturday and Sunday after Vic died I cried and was unable to think straight. I wanted to do the handouts myself but by Sunday evening I knew I would not be able to do it in time. My mind was blank, and I could not get Microsoft Publisher to do what I needed it to do… At 8.15pm I texted the undertaker and asked them to do it. I would send them the content, and they would format my information.
I prepared a wonderful slide show of Vic’s life. All the fun bits and the people she loved were in it with her. All the highlights of her life were captured in PowerPoint. “Never Alone” as performed by Jim Brickman and Lady Annabella would play as her coffin was carried out of the church. “If tomorrow starts without me” would play before the start of the service. The slide show would loop from 15 minutes before the service and again 10 minutes after Vic left the church for the last time.
The eulogy and thank-you’s would be done by me.
Strangely the “thank-you’s” was far more difficult to do. There were so many people to thank that had loved, helped and supported Vic and the family over the years…
I actually don’t know whether I blogged on the service as such before, but if I have either forgive me or please move onto another post.
When I stood up to do the thank you’s and eulogy I thought “It is the 3rd eulogy in 18 months I am doing…”
As I stood up Vic’s boys got up and flanked me. They bravely and stoically stood next to me supporting me as we paid our last respects. I could feel their bodies tremble and occasionally I hear a stifled sound as they suppressed their tears.
The boys and I before the memorial service
We stood on the stairs below the pulpit. Three steps below us Vic lay in a casket. More than a hundred candles burning; her St Josephs lilies on the casket and a beautiful framed photo of her… I so wish someone has taken a photo…
Like Denise I was surprised by the clarity of my voice. It was as if my voice belonged to someone else. The steadiness of my voice belied the physical pain of my heart.
I said the following:
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.
The photo on the casket
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!
One week before Vic died…
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.
Awoke today to nothingness, and no sense of direction
I looked upon the looking-glass which offered no reflection
Without much aim, I stumbled forth, devoid of my complexion
And set my way in this darkened day, begun in such rejection.
Aimlessly, I persevered, despite my lack of vision
Offered up my hopelessness as an object for derision
Stepped forth into my wandering, so filled with indecision
But felt somehow, that even now, this was the best decision.
Sightless and in full confusion, one foot before another
I wandered forth upon my course, each turn unlike the other
I cried out for a helping hand, I cried out for a brother
With breathless yelp, I screamed, “please help” but my words were quickly smothered.
I turned about and struggled home, afraid and full defeated
And not one time upon the path, ever was I greeted Yet even so in time…
Every day I go to Vic’s Facebook page to see whether someone remembered her… I leave her messages… Today at 14:18 I dialled her mobile number out of habit.
Exactly three months ago I knew my child’s life had been reduced to hours…I knew that her little body could no longer fight whatever infection was raging in it. Her temperature was off the chart… the thermometer only registers temperatures up to 106 °F (41.5 °C) and then goes onto “HI”.
It was this time, three months ago, that Vic’s breathing changed. Three months ago it was Vic’s last night of breathing.
Earlier that day I fell asleep next to Vic – my hand on the pulse in her neck. I was so exhausted I could not think or function. I just needed to be with her every second of her last hours.
The boys came to say their goodbyes…
I no longer allowed visitors.
I remember lying next to her recalling a discussion we had when I had flu and was running a fever. I am a terrible patient. I am such a ninny. I remembered saying to Vic “Sweetie, when I am dying please don’t let people touch me…”
“I won’t” she promised. “My skin also hurts when I am running a fever…”
“Why didn’t you tell me? It must irritate you when I stroke your hand or hair when you are sick?”
“Because I know you need to touch and hold me when I am sick…” she said.
“I will never to it again. So next time you are running a fever know I want to hold your hand and stroke your hair…”
“It’s okay Mommy. You can hold my hand. I don’t mind. It hurts but makes me feel better…”
“That’s an oxymoron if I have ever heard one in my life!” I laughed and Vic joined in
That night, three months ago, there was no idle chatter or laughter in the house. Just the sound of Vic’s breathing.
Tonight, three months later, everyone has gone to bed. There is no sound of laughter or idle chatter in the house. Earlier tonight there was.
I keep imaging that I am hearing Vic’s footsteps shuffling down the passage. The boys have lit extra candles for their mom. I know that they are sad.
I am aware that the dynamics of my grief is changing. I am starting to function, smile and look “alive”. The numbness has gone. The pain is real now. My sadness is constant. I go to sleep with tears in my eyes and wake up with tears running into my hair. My grief has become “mine”. It has become a constant companion. I do not want to share it. I want to embrace it.
I know there is so much to be grateful for, I know I wanted Vic’s suffering to end, I am grateful that she is no longer fracturing vertebrae from vomiting, crying with pain… I KNOW all of this on an intellectual level. I try to tell my heart to be happy or at least grateful, but my heart won’t listen!
I don’t want to sleep tonight. I want to lie awake and remember my beautiful baby girl, her warm smile, her tiny little hands and her pure soul. If I fall asleep I pray that I will dream of my baby girl…
I have sunk to a new low this weekend. I had every intention to attend church this morning. I woke up with tears streaming down my cheeks. I must have had dreamt of Vic. I knew that I could not handle the gentle arms and words of sympathy at church.
Maybe next weekend…
I would like to share this wonderful writing from a Facebook site – The Grieving Parent. It articulates my feeling beautifully.
I had a grief attack yesterday and again this morning….
After my daughter’s death, I learned that the first year’s grief doesn’t flow neatly from one stage to the next; it has multiple patterns, fluctuating cycles, lots of ups and downs. First-year grief will surprise you in many ways, but here are a few things you can expect.Expect sudden “grief attacks.” Practical matters demand attention in early grief when we are the most confused and least interested in things we used to care about. We must decide how to get through each new day. Some days, getting out of bed may take all the energy we have. Trips to everyday places like the grocery store feel so different. In my case, simple things like seeing my daughter’s favorite cereal on the store shelf brought immediate, excruciating pain.I call these unexpected reactions “grief attacks.” And unlike the response we would get if we had a heart attack while shopping, those around us don’t know what to do. We get good at hiding our pain, at postponing grieving for a more appropriate place, a better time.Expect exhaustion and disruption. Early grieving is perhaps the hardest work you will ever do. It is common to have difficulty sleeping, changes in appetite and blood pressure, tense muscles that are susceptible to strains, a weakened immune system.Many bereaved parents return to work, school, or other activities feeling vulnerable, less confident about their capabilities, less able to concentrate, distracted by memories, and flooded with emotions that disrupt thinking. For others, work is the only place they are able to concentrate- focusing on tasks helps take their mind off their loss for awhile.Those around us may have unrealistic expectations as we return to work or school. When one mother whose only child had died returned to work, her supervisor greeted her by saying: “I’m sorry about your loss but I want to talk to you about improving your work performance.” Expect to be stunned by the ineptness, thoughtlessness, and discomfort of some people, and to be thrilled and deeply touched by the kindness and sensitivity of others. Sometimes those you expect to support you the most can’t or won’t meet your needs, while others you weren’t that close to before reach out unexpectedly.Expect ongoing “echoes.” We experience so many emotions after our child dies. We may feel relief that our child is no longer suffering, then feel guilty about being relieved. For a time we may be unable to feel much at all. While learning to live with the hole in our heart and fatigue in our body, other responsibilities beckon. We must file insurance claims, pay bills, write thank-you notes, decide what we want to do with our child’s possessions, and on and on.Just when we think everyone surely has heard of our loss by now, the reality of our child’s death echoes back to us. A call comes from the dentist’s office about scheduling her a checkup, or we run into our child’s old friend who just moved back to town. Once again we must tell our story, respond to someone else’s pain, experience fresh waves of grief. Knowing certain events are coming, such as seeing the grave marker or reading the death certificate or autopsy report, does not prevent us from hurting. These are tangible reminders of the reality of death, while part of us still hopes it’s all been just a bad dream.Our child’s death causes us to re-examine our beliefs about the Universe, God, and how the world works. Your faith and belief system may comfort and sustain you during the first year or you may feel angry and disconnected from it. Remember that it is okay to question. You may be drawn to people who have experienced a loss like yours and can understand some of your feelings and questions. This is one reason many people in early grief find comfort in bereavement support groups. But remember that no one can ever totally understand your grief, your questions, and what your child means to you. Like all relationships, each person’s grief is unique and complex.During early grief, you may want to stay busy all the time, avoiding painful emotions and the exhausting work of grief, hoping time will heal you. There’s no set schedule and no recovery period for grief. But time alone does not heal- it’s what we do with the time that counts. Take the time you need to do your grief work. But also take time away from grieving to do things you enjoy, to rest and replenish yourself.When our child dies, our hoped-for future dies, too. Beginning in this first year, and continuing on from there, living with your loss means taking on new roles, new relationships, a new future- without forgetting your past. Sometimes, life takes surprising turns. Before my daughter’s death, I never would have imagined I would become so involved in grief support. It wasn’t part of my “plan.” Confronted with loss, we can weave the strands of our past into a new, meaningful future we never would have planned to live. Doing so is a conscious choice.Getting through the first year of your grief is like winding a ball of string. You start with an end and wind and wind. Then the ball slips through your fingers and rolls across the floor. Some of the work is undone, but not all. You pick it up and start over again, but never do you have to begin at the end of the string. The ball never completely unwinds; you’ve made some progress.My daughter’s spirit and our continuing bond of love gives me strength each day. May your child be there to help you during this painful first year, and in all the years to come.Jon-Daniel and his brave Mommy – January 2013
I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.
So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”
In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”
When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…
My standard answer to Vic was “I will be okay baby!”
Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”
“I will be fine. I will be grateful that your suffering is over…But I promise I will!”
I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…
So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.
We spoke briefly about the boys, but Alan firmly said that today we would focus on me…
I bravely started talking without waiting to be prompted. After all, that is why I was there.
“I knew that I would miss Vic after her death but nothing could prepare me for this” I said
“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.
I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.
I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…
I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…
I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.
I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.
I saw Alan look at the clock on the wall. I knew our time was almost up.
He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.
“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”
That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind, but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
Vic and I discussed this post… We cried then, and I cry now.
Vic's Final Journey 