Mommy’s dream is coming true…


Jon-Daniel’s BBM status today was “Mommy’s dream coming true” with this photo…

Jon-Daniel

Your dream is coming true my angel child. Your Stepping Stone Hospice is functioning, and we have received a building as a donation!  Next week construction will start and by the end of the month we will move in! 

Behind the building there is a duck pond and a quaint little chapel.  I look forward to planting some roses in the garden!  We anticipate wheeling our day-care patients into the garden so they can feed the ducks.

Of course we do not have furniture yet.  The boys are donating the furniture for the two Dignity Rooms (dying rooms).  It was their decision!  We want to real make the rooms pretty and lively… We will play gentle music and burn candles like we did for you… It will truly be rooms of love…

Yesterday I was at the site and I was looking at the terrain that they were clearing.  All of a sudden there was this perfect white feather…Another message from you Angel.  Thank you.  I needed a sign…

Stepping Stone Hospice is daunting.  This week an article appeared in the Tames Times.  It opened a floodgate of telephone calls…  An elderly man called.  His voice was raw with grief and despair.  His wife is dying from liver cancer and he is going through all those familiar caregiver anguish.  How will he know when it is time?  But she is still working and in total denial…He did not want help and will put my number on speed dial… I experienced what Arlene must have experienced when I phoned her the first time….  Quite a few new patients this week…so much pain and fear…

We have had wonderful offers of help.  A woman phoned today and said that she did not know how to care for a sick person, but she was prepared to go clean a sick person’s home… We have had offers of help from professional councillors, people from all wards of life…Now we can only hope and pray that people will volunteer furniture and make some financial contributions! 

I am amazed at the goodness and generosity of people.  The company that donated the building belongs to a young man, Jaco Schultz.  You would have liked him my angel.  He is really a nice young man with a “white heart”.

 I can hear you asking “Where did you find him Mommy?” 

I did not find him.  He found us!  Long story…here is the short version!

We sell second-hand clothing to raise funds…  El-Marie, Jaco’s sister took 14 bags of clothing to Trix.  Trix (a wonderful woman with a superb sense of humour and a passion for Stepping Stone Hospice) told her what we do with the proceeds of the clothes (we buy medication for the indigent patients).  Two weeks later she dropped off more bags and asked whether we could meet her brother… 

The meeting itself was quite funny.  It was when I had that terrible flu.  The morning of the meeting I hardly had a voice, my head was throbbing and I was certain I would die.  Remember the woman you met, who lives around the corner from us and whose daughter-in-law was paralysed in an accident in December 2012?  She was at the meeting.  I was so scared I would spread my flu germs, and she would contract my flu, that I wore a facemask – I did not want DiL’s death on my conscience.  It must have looked so funny!  Me with this horrible surgical facemask… gasping for oxygen and only breathing in concentrated germs! 

Jaco asked to see the terrain, and we went on a walk-about.  He asked whether a tree could be moved….We had a promise of a building that would have a small day-care centre, two dignity rooms, a treatment room…! As easy as that!

plansWithin weeks the promise is becoming a reality.  Construction starts next week!  I am so excited!  So my Angel Girl, there was a purpose to your suffering after all. I wish it was different but it isn’t. We have been blessed beyond comprehension. 

I believe that God is personally overseeing this project. 

Love and miss you with all my heart Sweetie.

https://tersiaburger.com/2012/11/08/being-prepared-to-die-is-one-of-the-greatest-secrets-of-living-george-lincoln-rockwell/

https://tersiaburger.com/2012/11/16/we-both-laughed-and-the-moment-was-over/

https://tersiaburger.com/2012/12/02/where-to-now/

https://tersiaburger.com/2013/02/13/the-process-of-preparing-for-death/

https://tersiaburger.com/2012/10/15/remission-15-10-2012/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2013/05/27/hospice-patients-live-longer/

https://tersiaburger.com/2013/04/24/stepping-stone-hospice/

https://tersiaburger.com/2013/01/03/tomorrow-may-be-better-than-yesterday/

 

 

1977


Vic as a baby
Vic as a baby

Yesterday Jon-Daniel and I went for a long walk on the beach.  The water was freezing but my feet adjusted to the temperature.  It was great feeling the sand between my toes.  Families were playing in the sand – very few people were brave enough to swim.  There were quite a few surfers braving the cold water.  The sky was clear and for the first time in many, many months I felt totally relaxed.

I thought back to Vic’s birth!  I remembered a beautiful baby girl born with a mob of black hair.  I remembered the rush of love that I experienced when I first saw her.  I fell in love with Vic the second I lay eyes on her.  When she curled her perfect little fingers around mine I was lost in the wonder of her perfection.

Vic was born 3 weeks early.  She weighed in at 5.6 lbs. (2.54kgs).  She was tiny but perfect!  From the first breath that she took she ruled my life.  Her first little outfit was a baby-pink jersey that a cousin knitted for her.  Her clothes were doll-sized.

My Mom bathed her for the first month of her life.  I was too scared!  At 6 weeks Vic had one feed a night only…. She was born an angel.  Vic had her first known fracture at 6 weeks… She started walking at 18 months; Vic built her first puzzle before she could crawl.

I remembered her gurgling and laughing.  The minute she opened her eyes she would have this huge smile on her face.  Her smile reached her eyes even then….

Vic never stopped smiling.  She was a ray of sunshine.  She never complained.

When I think of the cards the poor little poppet was dealt I realize more than ever what an incredibly strong person she was.

We were driving back from the first athletic meeting when she was in Grade 1.

“Mommy I want to ask you something” Vic said

“You know you can ask my anything you want…” I replied very upbeat.  I had won the parents race and felt pretty good about myself.

“I know what you are going to say …” Vic said

I looked into the rearview mirror and saw silent tears running down her little cheeks.

“What’s wrong Angel?” I asked

“Mommy, why can’t I run like the other children?” she replied.

Vic was diagnosed with Osteogenesis Imperfecta at 18 months.

I was in total denial that there was anything wrong with my perfect child.  My Dad was the only one who was brave enough to continuously tell me that there was something with Vic.  The sclera of her eyes was blue and she fractured easily.

The grandparents conspired with Tienie (her father) and took her to the Freestate University.  A professor assessed Vic and diagnosed Osteogenesis Imperfecta.

The family decided that Tienie had to break the news to me.  I went mad with fear.  OI is a very rare disease and in the pre-world wide web days, a library was the only source of information.   I went from doctor to doctor begging for a cure or even a hint of hope that there was a cure in sight.  The doctors told me I should wrap Vic in cotton wool and wait for her to die

Whilst all of this was happening Vic kept fracturing bones.  She would bump her little sandal against the step and fracture her tibia.  Whilst in Plaster-of-Paris she would re-fracture in the Plaster–of-Paris…  We were treated like child-abusers at hospital emergency rooms and our neighbours reported us to Child Welfare.

Every living moment I would talk to Vic about how special she was; how frail her little bones were and how careful she must be.

When Vic was 3 years old a colleague mentioned a homeopath that worked miracles with rare and untreatable disorders…  a Professor Majorkenis.  I immediately made an appointment to see him.  He practiced in Johannesburg, and as a small town girl I was petrified.  Johannesburg was Sodom and Gomorrah!

The Professor was of Greek descent.  He was of a short stature and spoke heavily accented English.  His brown eyes were wrinkled, warm and gentle.  His handshake was firm and reassuring.

He spent a long time examining her, measuring her electronic fields and all sorts of weird and foreign tests.

He made no commitment.  He merely told me that he was on-route to Europe for an International Homeopathic Association conference and would discuss it with his fellow doctors there.  (He was President of the International   Homeopathic Association.)

I received a phone call from France a week later.  It was the professor!  The connection was poor and with his heavy accent I managed to hear that he was prepared to do experimental treatment and wanted to start in two weeks!

Without any discussion with anyone I resigned my job, phoned a colleague who has relocated to Johannesburg a couple of months earlier and asked him whether he knew of any vacancies in the glass industry and went home to break the news to my husband and parents!

The family went into high-energy planning.  Vic and I would travel by train as I was scared of driving on my own and getting lost.  Tienie would drive my car to Johannesburg two weeks later so he could celebrate Vic’s 3rd birthday with us.  I would live with my parents-in-law,  who had recently relocated to Johannesburg, and Tienie would live with my parents.  He was still at University and could not relocate.

We gave up the flat, packed up our furniture and belongings and put everything in storage.  Vic and I said our goodbyes to all our friends and then it was time to leave…

I remember my fear with crystal clear clarity when we boarded the train.  I cried hysterically and clung to my Dad.  My mom sobbed, and my dad wiped tears from his eyes telling me I must be strong and look after the “little one”.  We would speak on the phone every Sunday…

The train slowly pulled out of the station, and I held my sobbing baby girl close to my heart.  Her hair was wet from my tears.  Vic was totally distraught.  My parents, siblings and Tienie faded into the night as we sped towards a cure.

 

I love you Angel Child


100_7810
Vic and her boys on her 38th birthday

I am at a stage where it feels as if it is impossible to recover from the pain of losing Vic.  I am told that the grief will gradually get better and become less intense as time goes by.

The first few days after Vic died was so intense.  Family and friends cried, and we comforted one another.  The house was busy with people coming and going.  The planning that goes into a funeral and the writing of the eulogy took a lot of time.  My grief was raw and incredibly intense.  My heart physically ached.  I experienced feelings of anxiety, panic, sadness, and helplessness. Yet it is actually a surreal feeling… it felt as if we were removed from the world.  It felt as if I looked in from the outside.  I heard myself speaking and reacting mechanically…Old school friends phoned and I rushed to get through their words of condolences so I could ask them about their lives.  I did not want to discuss Vic’s death.   They must have thought I was crazy.

People said “you are so strong…”

When a loved one dies at home I think it is harder afterwards…There is a “mystique” to the room of death.  The smell of death lingers and the room is littered with medication, blood pressure equipment, thermometers and syringe containers.  Bedpans and vomit-dishes are still in the bathroom…

The planning of Vic’s memorial service actually helped me get through the first days after her death.  Friends and family spend time with us talking and sharing memories about Vic.

Many times, people show their emotions during this time of ritual.   Overwhelmed by Vic’s death we actually did not show emotion right away — even though the loss was very hard.   We stood amongst our friends and family at the reception after the memorial service smiling and talking.  To the world it must have appeared as if we were strong and accepting of Vic’s death. Being among other mourners was a comfort; it sort of reminded us that some things will stay the same.

But the time came when the far-away family left, friends went back to their lives and the steady flow of visitors stopped.  In a way it was a relief.  We were forced to stop and come to terms with the reality of the situation….the pain of the loss and the enormity of our grief.

Within a week we were back at work and school.  People were and still are wary of us – they do not know how to handle our grief.  We quickly learnt that other people are not interested in our grieving process…We stopped talking about Vic’s death…But although we no longer continuously talk about our loss, the grieving process not only continues but intensifies.

It’s natural to continue to have feelings and questions for a while after someone dies. It’s also natural to begin to feel somewhat better. A lot depends on how your loss affects your life. It’s OK to feel grief for days, weeks, or even longer, depending on how close you were to the person who died.  I was told yesterday by someone who truly loved Vic that Vic’s death is only a reality when they are in our home.  When they leave it almost becomes a distant memory….

The loss of a child is different to the loss of a parent.  The boys’ grief is different to my grief…   I will go further and say that the grief of a teen is different to the grief of an adult child who lost his aged parent.

Vic’s death has been a devastating, distressing experience in the life of the boys. Although the boys have spent the majority of their lives in our home their sense of security and stability in the world has been turned upside down. Vic’s death has become the defining event in the boys lives. The boys have begun to define their lives into two categories: “before Mom died” or “after Mom died.”

The boys and I have experienced a sense of relief, ambivalence; guilt and regret after Vic’s passing. The boys have categorically expressed their sense of relief that Vic’s intense suffering and pain is over. I prayed for Vic to die.  This sense of relief has however brought on more guilt!

Jon-Daniel was the first of the boys who had to cope with the realization that Vic would not be around to celebrate rites of passage;  Vic slipped into a coma the day Jon-Daniel received his school’s honours award for academic achievement…..

The boys are battling to cope with Vic’s death.  Their grief is intensifying.

On the 8th of April they will meet the Hospice Psychologist.  On the 25th we are flying down to Cape Town for 13 days.  We need a change of scenery.  We need to grieve without being told to “let Vic rest…”

I make a point of telling them that I miss their Mommy too.  They light candles for Vic.  I cry in my pillow.

I know that the boys will eventually move on.  It is the way it is – children bury their parents.  It is normal.  But a parent should never have to bury their child…

For 38 years my beautiful child was the centre of my life.  I lived for her.  Now I merely exist.

I hear her say “Mommy I love you” and I whisper “I love you more than life angel child…”

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…

 

 

Jared gently helping his Mom
Jared gently helping his Mom

 

Jared and Vic having a chat
Jared and Vic having a chat

 

Esther and I with precious Vicky
Esther and I with precious Vicky

 

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

 

 

 

 

 

 

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.

Baby Jared
Baby Jared

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 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”.

Mother and Son
Mother and Son

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/

I don’t want to die


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

Do you think we will be able to do Italy Mommy?” she asked after a long silence

I hope so Baby. I think we must take the boys with us…” I replied

Oh Mommy, can we? We don’t have to go for a long time…” Vic said

We lay quietly for a while. Vic trying to breathe through her nausea and pain and I contemplating how I am going to pull off this Italy thing… Just imagine flying with a caseload of injections and a litre of morphine syrup…

Mommy, I don’t care what you do with my ashes… It was so hard putting my father’s ashes into that wall of remembrance! Are you going to be okay Mommy?” Vic cried

My heart stopped. This was so out of the blue… “You will always be with me. I will not put you into any wall” I said

“I will be your guardian angel.” Vic said

I know but remember I will need some privacy… “I said

Don’t worry Mommy! I will make sure my father doesn’t peep as well” Vic laughed through her tears

“I am scared Mommy…”

I am scared too Vic…”

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/