Posted in A Mother's Grief, Death, Death of a child, Family, Family Life, Terminal Illness

A Mother’s Love for her Sons


A year ago I posted this.  As I said in my previous post – Chaka’s 2012 is a separate story.  I am reposting the separate story…

I have been researching the effect of a mother’s illness on her children.  The boys are two beautiful, well-adjusted, honest and compassionate young men.  Vic’s illness has certainly deprived them of a childhood in the true sense of the word and prematurely matured them into compassionate, caring, young men far too early in life.  At the tender age of thirteen Jared was cooking for the family…  This must certainly have an effect on how the boys perceive relationships with people.

Now according to my research the boys have become what is called ‘parentified’ children. These children solve the problem of sick and inadequate parenting by taking care of their

parents. They in effect become     parents to their parents, giving to the sick parent what they need from the parent. Now the roles are reversed. This seemingly creative solution is unfortunately too self-sacrificing to be healthy in the long run.

“‘Parentified’ sons who take care of their sick mothers in order to cope with their inability to parent, struggle to suppress obvious needs for love and feelings of loss. They learn to work hard taking care of the needs of others and living off of the scraps that come in the form of reinforcements for their competence and reliability. Their needs for love are overlooked and overshadowed by everyone else’s needs.”  The boys, especially Jared, falls into this category 100%.  When his little girlfriend was hit in the eye by a hockey ball, he immediately went into caregiving mode,  At the time I thought it to be extremely unhealthy that he already has this caregiving character trait.  He used to always make the tea and offer to do so much around the house and for his Mom.

I have put a stop to this.  I pray it is not too late for the boys to adjust to a “normal” household…

It is however important for them to realize that death is a part of the circle of life and that it is not something dark and something to be feared but rather, if happening in a timely fashion, something that one can embrace. The boys appreciate and respect Vic as their mother.   Vic has raised her sons to be respectful.

“The power of a mother’s strength comes from her heart, from her unabashed, unconditional, and unwavering love for her child. There is, as J.K. Rowling wrote in her Harry Potter books, a magic in that love. No matter what happens, a mother is always there for her child. A mother’s love is never to be questioned, and – though she may not know it at first – neither is her strength.”

Vic literally rose from her deathbed to be there for Jared with his operation on Wednesday.  When my Mom died I related her final moments to someone jumping from a diving board into a deep pool, reaching the bottom and kicking to rise to the surface of the water for one more breath… only to sink again.  This is what Vic does.

Before Jared was wheeled into theatre he whispered into his mom’s ear.  She took his hand and said “I promise”.

Vic, drip in hand, walking with Jared to theater!

The surgeon said the operation would last two hours.  Vic dutifully went back to bed and rested.  One hour and forty-five minutes later she was, IV drip in hand, standing outside the theatre door, waiting for her son.  I begged her to at least sit on the chair, but she refused.  “Mommy, I promised Jared my face would be the first thing he sees when he comes out of theatre!”

It took a superhuman effort, but Vic’s love for her son drove her to keep her word.  It is true that no mother wants her child to suffer in any way, but life is unfair like that. So, we as mother’s do what we can to provide support, comfort, and protection. And we grow strong enough to bear their hurt as well as our own.  As Vic did.  As I do. Motherhood cuts deeply, brings you to your knees most days; but it also brings a strength that may surprise you.

The vicious cycle of anger truly rose to the occasions on Wednesday.  I got angry with Vic because she was not putting her health first!  I KNOW I would have done the same but it was terrible seeing my child do herself harm to be a Mother.  I want to wrap her in cotton so she would be spared that extra day…

Yesterday Vic said she doubted whether she would see the end of the year.  She is however adamant to be at Jared’s confirmation…one more goal…

Go Girl!!!

Well, Vic is home.  I am so grateful.  She is conceding that she is too sore and ill to go to hospital…Saturday Jared comes home!!

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Posted in Daily Post 2012, Grief, Uncategorized, Vicky Bruce

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!

Vicky Bruce
Vicky Bruce
Posted in Daily Post 2012, Family Life, Grief, Religion in my world, Uncategorized, Vicky Bruce

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 5th 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…”

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Humour, Palliative Care, Terminal Illness, Vicky Bruce

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….

 

 

 

 

 

 

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Jared, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

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/
Posted in Daily Post 2012, Family, Family Life, Grief, Palliative Care, Terminal Illness, Vicky Bruce

Thank you God


I just finished a batch of choc-chip cookies.  The house is quiet and sweet smell of the biscuits has permeated the air.  The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped.  It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning.  She lanced the cellulitis
abscess on Vic’s arm.  My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face.   He cried with pain.  Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated.  She has a kidney infection.  Kidney infections make her tired. I just checked on Vic and she is sleeping so peacefully.  She has a serene expression on her beautiful face and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home.  I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved.  I can now care for my child without having to consider my “position” in her life.  I am able to be her mommy and take care of her. The boys are settled and happy living with us.  We love having them so close to us.  They are such well-behaved, kind and helpful boys!  Before Vic moved home the boys, mainly Jared, had to cook most days.  Now they are able to be children. Life has settled into an easy routine.  We have laughter and fun.  We cry and despair.  We hug.  We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking.  She helped with the preparations for Jared’s 16th birthday party.  Vic passed me the spices when I baked this year’s Christmas cakes.  We laughed when we decided the cake needed another “splash of brandy”.  Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person.  He is my rock and pillar.  He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.      

Posted in Chronic Pain, Daily Post 2012, Family, Family Life, Grief, Jared, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Vic is sleeping peacefully


IMG_4860

It is 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.

“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode.

The situation is getting to Danie.  My poor husband tries so hard to be strong and make life easier for the rest of us.  Jared and Jon-Daniel are deeply conscious of the situation.

“Life will be horrible without Mommy” Jared said today.  “She takes so much of our time, and such a big space in our lives….  Mommy has such a presence Oumie…”

We spoke about his little brother and Jon-Daniel’s inability and aversion to discuss his emotions.

I realised that the boys are already starting to dread the void Vic’s passing will leave.  Anticipatory grief is a killer.  It is unfair that these two beautiful boys have to experience so much pain and hardship in their young lives.  They should be riding their bikes and getting up to mischief.  Now they are stressed out because their mother is dying.

I am too tired to write anything that makes sense.  I just need to record today.  I never want to forget today.

I want to remember how I felt when I lay with my child this afternoon.  I want to remember her tears when she spoke to her sister.  I want to remember the smell of her vomit.  Maybe it will make it easier to accept later on.

Posted in Chronic Pain, Family Life, Grief, Palliative Care, Religion in my world, Terminal Illness, Uncategorized, Vicky Bruce

Hospice counseling….


We met with Alan, the Hospice counselor, today.

On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath.  “I am like you Oumie.  We don’t talk…”

Yeah”  I said.  “But I really think the time has come for us to talk to someone.  Besides it is part of the Hospice thing.  We have to do it!”

The whole day I was thinking of shrink jokes” Jared said.  “Do you think I can ask him ‘how does this make you feel?‘”

We all laughed.

Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned

Alan is a short young man.  I think he is in his early thirty’s.  We shook hands and he asked us how we wanted to “do it?”

The boys went in on their own.  I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death.  Thirty minutes later I was invited in.

The boys tell me they are coping well.  They don’t see the reason for seeing me…..What do you think?  Are you guys coping?”

I was truly taken aback.  “Yes, I think we are coping.

So Tersia, why do you think the boys need to see me?”

I did not speak for a couple of minutes.  I was grappling with my brain as to how much I should tell this stranger.

I think the emotional roller coaster is getting to us.  We have said our goodbyes so many times and Vic always bounces back!” I eventually said.

“Yes, Jon-Daniel said so” Alan replied.

“I worry that the boys live in a home where death lingers.  There is not enough laughter in our home.  It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused

“I get impatient with Vic.  When she has half a breath she will organize a party.  When the pain medication works she will not pace herself.  She will hurt herself and  then I have to pick up the pieces.  Sometimes I am scared that her suffering will not end. ” I continued.

What type of party will she organize?” Alan asked.

The boys and I laughed!

“It is only a figure of speech….” we explained.  “She will try and do things with the boys and hurt herself.”

What type of things?” Alan asked

Drive and take us for a milkshake” Jared replied.

“Mom forgets things and she thinks we are all against her…  Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.

It is not about the final moments.  It is not the final words or even the final disagreement.  It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything.  Life is hard for all of you right now.  It is okay to be scared and to get irritated.  You must tell your Mom how you feel.  I am not saying you must back-chat.  What I am saying is that you must tell your Mom how her actions and illness makes you feel.  The household consists of more than one person…. You all have the right to living…”

The boys asked to see Alan for another session….  Thank you God for another angel!

 

Posted in Chronic Pain, Family Life, Grief, Jared, Terminal Illness, Uncategorized, Vicky Bruce

“We never cry in front of the children …..”


Jared and Vic after the “news” today

Babies are emotional beings right from birth. As parents we know that babies respond to emotional expressions such as smiling within the first few weeks of life. Within three months babies can react to and express joy, interest, anger, sadness and disgust.

Babies and young children express their emotions without reservation.  In time, they however learn to control and even conceal some of their feelings, especially when they are sad, frightened, or angry.

As adults we lose our ability to communicate spontaneously.  We become guarded.  Many of us may still be comfortable expressing positive emotions, such as joy, pride and happiness, but will refrain from sharing feelings that we fear may make others uncomfortable.

The grieving process that walks hand in hand with terminal illness however catapults the bravest of us into a whirlpool of emotions ranging from fear, sadness and anger to irrational hope.

We are what we are.  If you are naturally an introvert it will be very difficult to reach out to others when we or a loved one battles a serious or terminal illness. This makes the grieving process difficult for us.  People who are comfortable in expressing their emotions are usually more able to reach out to others for the support and reassurance that they need.

When I am scared or angry I withdraw within my safe place where no one is welcome or allowed. In fear I will push people away from me.  Anger is different – I will lash out and go for the jugular.  Fear for my family will bring out the most primal instincts in me.  I will do anything to protect them.

To maintain control I hold tightly onto my emotions– I know that if I allow myself to falter even a little, I may collapse into a whimpering heap of tears.  It has taken superhuman efforts to allow Vic to see some of my pain.  Well, I fool myself that she only sees some of it.  Vic knows so well how my life will screech to an end the day her life ends… We have spoken about absolutely anything and everything.  She knows my heart.

Tomorrow morning Jared will have a lymphoma biopsy.

Today, when I saw the tears of fear form in Vic’s eyes, I said “Stop!  We never cry in front of the children”

Tomorrow I will smile, support and encourage.

Tonight I will weep for my beautiful grandson, his mother and his little brother……..I will weep for his grandfather and everyone who loves and admires him.

When I wipe my last tears I will retreat to my safe place…..  Tomorrow I will smile, support and encourage.

Posted in Chronic Pain, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Never Alone


Image

Yesterday I was really angry with Vic and the unfairness of life!!  I know it was because Jared was hurting and I was scared.  I watched nurses put needles and IV’s into my beautiful grandson.  I saw him being wheeled into theater for the second time this year.  I remembered how ill he was as a baby and a toddler.  I felt the same fear strike at my heart as 13 years ago…

I wish I could protect my child and her sons from the pain, fear and uncertainty that they live with every day of their lives.  I wish I could hold them close and ward off all hardship, pain and fear.  I cannot.  I can only promise that I will never desert them.  I will continue looking for brave doctors and cures….

So tonight I dedicate this song sung by Lady Antebellum to Vic, Jared and Jon-Daniel http://www.youtube.com/watch?v=lnNK4Alwbsw

I love you my beautiful Vic.  Your boys are my life.

Posted in Chronic Pain, Family Life, Grief, Terminal Illness, Uncategorized, Vicky Bruce

Kidney stones on the move….


Another Hospital Passage – Different Day

On the 23rd of July, we found out that Jared had kidney stones.  (https://tersiaburger.com/2012/07/23/deje-vu-7/).  At the time the kidney stones were  not obstructing the urinary track so the decision was made, by the Urologist, to leave it and reassess the situation in 6 months.   On Friday night, at a Youth Meeting, Jared’s kidney stones gave notice that they had started to move!

I was petrified that if we took him to Casualty we would end up with a bum Urologist (https://tersiaburger.com/2012/07/27/vic-olympic-champion) so after researching “Kidney Stones” on Google we (I) decided to monitor and control his pain, let him drink lots of water, anti-inflammatory tablets and a urinary track antacid…  In the event of him “vomiting from pain” or “passing blood” we would be forced to be at the mercy of the On Call Urologist!

By Sunday night the poor soul was quite pale and said his pain was at an “8”.  There was no sign of bleeding and an insignificant level of protein in his urine (I kept testing his urine) and the Leucocytes, Nitrate, UrobilinogenpH, Blood, Specific Gravity, Ketone, Bilirubin and Glucose levels were all within the correct limits….

I managed to get an appointment with the Urologist for 10:00 this morning.  He did a scan and low and behold there was this large (6.6mm) kidney stone stuck in the  urethra…. At 15:00 this afternoon Jared was wheeled into the operating theater for the 2nd time this year.  Thirty minutes later the urologist came through and told us that Jared had passed 5 of the original 6 kidney stones – including the one that showed up as causing an obstruction at 10:00 this morning!  The child did not whimper or moan!  He was stoic in his pain!  The 6th kidney stone was dissolved with a  procedure called lithotripsy. In this procedure, shock waves are used to break up a large stone into smaller pieces that can then pass through the urinary system.

In the passage of the hospital Vic said to me “Mommy, I am so grateful.  Jared got through the operation like a real trooper.  ”  I was immediately filled with an all-consuming anger.  The operation went well, Jared did get through it like a trooper but what has started happening in his young body?  Adhesions people!!  Flippen adhesions!!!!

I said nothing but she saw my face.

As soon as we had Jared settled and comfortable I brought Vic home.  She was totally exhausted and in absolute agony!

In the car Vic said to me “Mommy, you seem so angry with me?  What have I done?”

“I am angry that an innocent child is going through the same hell that you went through as a child”

Vic’s father and I were not aware of the Osteogenesis Imperfecta gene on her Dad’s side of the family.  We made the decision not to have more children after Vic was diagnosed.  We were determined to never subject another child to OI.

From a young age, we told Vic that OI was a genetic disorder.  She KNEW that she should not have children.  She fell pregnant TWICE.  I know she was on  the Pill, suffered from SEVERE endometriosis and that she fell pregnant against all odds.  Yet, she chose to carry the babies and risk them being born with the OI gene…. Despite the Dept of Genealogy at Wits University, her gynecologist and doctors strongly advising against it!

I love the boys with every fiber in my body!  I am so grateful that they are in my life.  They have enriched my life in every way.  I cannot imagine my life without them.  I don’t want to live without them.    But, almost every day of my life I counsel at least one of the boys that, only if the OI gene can be isolated, should they consider having children one day…  They see their mother’s suffering.  They live her suffering!  Jared is starting to live his own suffering.

We are seeing Jared regress into Osteogenesis.  It has been obvious for a long time that Jared’s ligaments and tissue are affected.  He has only had a couple of mild fractures but he is always hurting somewhere.

Today Vic said that I have become “hard”.  I suppose I have.   Vic thinks I am hard because I believe in death with dignity.  Because I stopped all aggressive treatment for Alzheimers Pneumonia after my Dad no longer had any control over his body functions and had forgotten how to swallow or walk!  Vic cannot believe that I want to talk to the boys about considering vasectomies when they become sexually active (or earlier).

I cannot do this again.  I am venting.  I am so angry!!  I am angry with a debilitating disease and yes, I am angry with Vicky for allowing this dreadful gene to be passed on to an innocent child.

This vicious cycle has to stop!

Posted in Uncategorized, Vicky Bruce

Vic’s final hospital visit 30.7.2012


Vic's Humerus after Five Weeks

This weekend I saw raw resentment towards me in my little girl’s eyes.

We checked into Hospital on Saturday morning at 08:00.  Vic was seriously peeved that she did not get a private room as per the doctor’s instruction.  Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language.  She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.

Then she started telling us about this wonderful neurosurgeon that she works for.  She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down!  Vic then said that she had decided no more surgeries…wow!  Did this set the neighbour off!  She took the moral high-ground and started telling us that we must have faith and God will heal Vic.  Vic was in hospital because we keep asking God to heal her.  We should only ask once and then have faith…

She laid hands on Vic when I went downstairs for a cup of tea.  I would never have allowed it!!

Please don’t misunderstand me – I have nothing against religion.  Religion is important.  I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child.  Jared said to me today “Oumie, I don’t want to be a Christian like that …”

I do not stand in judgement of anyone.  It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin?  As my friend Marlene used to say “Who died that you think you became God?”  If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians.  If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…

People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made.  They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice.  Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that?  Surely love is unconditional?  Through thick and thin?

I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…

Jared sat at hospital with us all day Saturday.  He is old enough to want to do it!  That young man adores his Mommy.  Jon-Daniel copes in a different way.  He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend.  Jon-Daniel makes Vic laugh.  Jared makes Vic coffee.

Two different boys with two different ways of coping and two different ways of expressing their love.   Yet united in their love and despair for their mother.

Vic ended up going into theatre just before 19:00 Saturday night…she was starving!!  Poor little poppet!  I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre.  HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays.  He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta!  I must add that he too had never had an OI patient as old as Vic.  So Vic had two specialists operating on her little arm.

By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.

History was made Saturday.  A doctor wrote on Vic’s file “Mother of patient to stay with her”!  In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”.  What a bright and intelligent young man he is even if he charged double medical aid rates.

Vic was however extremely angry with me because she was sent to ICU.  Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward.  She cannot be given the amount of opiates that she needs, for pain control, out of ICU.

I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control.  (Thank you Google for the fact sheet).  When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!”  She cried.  I saw the resentment in her dark, sad eyes when she looked at me.

Image
Vic’s Humerus Pinned and Fixed

For once I did not care.  I love my child and I will do anything and everything to spare her pain.

I have to find out which anaesthetic they used.  The last two procedures at the Union resulted in terrible aggression in Vic.  Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister.  She told me exactly what she did and did not think of me.  It was a horrific experience.  I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.

Vic ended up spending 2.5 days in ICU.  I never left her side but to go shower at home and take Jared to the urologist this morning.  The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme.  I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.

Well this is now behind us.  We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm.  That Vicky will get better and enjoy some Jurnista quality of life!

I want to blog on ICU’s and what we subject our loved ones to next.  I am just too tired and emotionally drained to even attempt it today.

Posted in Uncategorized, Vicky Bruce

“I’m tired of living but I do not deserve to die. I am motivated by nothing yet I move on… “


“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.

Muriel posted this message on Vic’s Facebook page.  Today it echo’s my feelings.  I am so tired of living.  I am so tired of this miserable existence that we call life.  Surely, there must be more to life than breathing!

Today was a day out of hell.  I had to leave home early this morning as we were testing some systems that are critical to a contract that we are negotiating.  I got up with great difficulty, showered, and made Kreemy Meal for my family.  Both Jared and Vic need soft foods.  I left on time with strict instructions for Danie as to where and when to collect Vic’s morphine syrup from the Pain Clinic.

Within 5 minutes, I was stuck in terrible traffic.  Five lanes reduced to two…

Once we reached the test site, the subsystem manufacturers arrived 2.5 hours late!!  I phoned Vic to check on her only to be told that she had gotten ill all over herself!  She had to bath and I was not home to help her!  I told her to take anti-nausea tablets, lie down for 15 minutes, and take morphine tablets again.  Once she felt better, she would have to ask Primrose, the helper, to help her bathe.  I could not leave the test site.

Danie phoned to tell me – “No Morphine Syrup – come back next week”.  Some good news was that Esther came to visit and helped Vic bath.  That girl is an absolute saint!  Esther also took Jon-Daniel to the movies.  I am so grateful that he could get out of the house of gloom and illness.

Then the system failed…  The shipment would be delayed by at least another 5 weeks!

Another traffic jam to my next meeting…

An hour and a half later, I left the meeting for home and was stuck in the 17:00 peak hour traffic!  A 20-minute trip became a 1.5-hour trip!  Arghhhhhh

At home, I quickly prepared dinner. Vic has to have dinner by 18:30 as she must take her medication at 19:00.  In my haste I forgot poor Jared is only allowed pureed food so I started cooking (a second meal) some gem squash, potatoes, and carrots for him.  I put it through the strainer and rushed off to his room with a tray and his pureed food.  I do not know what I did but the next thing pureed vegetables and broken Noritake was all over the floor!  I just burst into tears.

I cannot believe that something that I would normally laugh off as an accident set me off.  Poor Jared had to eat soup for dinner.  He is so tired of soup!

Well today, I am fed-up with life.  I am tired to the core of my soul.  I do not want to hear that I am doing a great job or that I am strong.  I do not want to hear anything!  All I want is ONE carefree day in my life!! One day with absolutely NO responsibilities.

Oh dear God, the boys offered to do their Mom’s tablets tonight so I can have a full night’s sleep…What am I doing with my pity party?  I have Vic in tears because she is feeling guilty because of the stress her illness has caused me, the boys feel guilty because I am tired and Danie wants to take me away for a weekend so I can rest and relax…How can I ever relax whilst my child is so ill.  I do know I cannot afford to cry.  It distresses everyone around me.

I need a stronger anti-depressant.

I am going to bed.  I am going to feel sorry for myself in the privacy of my room where I cannot cause more stress in my family’s lives.  Life is already so hard for them.  Tomorrow is another day and we will face whatever life throws at us!

“I’m tired of living but I do not deserve to die.  I am motivated by nothing yet I move on.  I have nothing but I have everything.  I just don’t want to understand.

A lifetime ago…
Posted in Uncategorized, Vicky Bruce

A vicious cycle of nerves


I thought Sunday to Wednesday was a nightmare but boy oh boy come Wednesday morning and my child became a terror!  The “my son really needs me” adrenaline kicked in and Vic was uncontrollable!

She was out of bed, marching into Jared’s ward as if she was the healthiest person in the world!  I was at a total loss.  My dearest friend Gillian wrote me a message: “What a wonderful mom.  Her child comes before her illness. WillVic Accompanying Jared to theater. not let go until her kids are okay. You can be very proud of your daughter”… My reply was: “Yeah – too cross with her to give her any credit at this stage”

Vic cannot pace herself.  Like on Sunday, she will be like a jack-in-the-box and when the moment is over, crash!  In this super human effort to be there for Jared she causes so much stress to everyone around her.  Jared stresses because she fusses around him, I stress because she is overdoing things again and I know there is a severe penalty to be paid for that, Jon-Daniel stresses for both them!  Danie stresses for me… I get irritated with Danie for trying to protect me…. It is a vicious cycle of nerves!

Jared’s operation went very well.  The poor baby was in so much pain but stoically brave!  Not a whimper!!  I am so proud of this beautiful boy.  I was a little concerned for his emotional well being after Sunday.  He cried with fear and frustration for his mother.

Vic was up and down the passages last night checking on her son!  This morning Jared said “Oumie I am so tired.  Mom kept coming in and touching me…”  Vic means so well!  She wants to be there for her children but often does not understand that she is the sick one.  Her actions stress us out.  On the other hand, I must admit, that I was more at ease knowing that Vic was in the same hospital as Jared and able to check on him…

It is such a heart wrenching situation.  Vic wants to be a mother and I want her to be a child!!  When she is okay she can be whatever she wants’ to be.  When she is ill I want her to become my baby again…  Vic is an amazing mother.  She loves her boys with every fiber of her body.  She has fought to stay alive for the boys.  Who am I or anyone to deprive her of this wonderful privilege?  At the end of the day it is her reward for surviving the odds…

On Monday the physician cancelled the bloods he had ordered and agreed that palliative care was the only route to go… I don’t think he thought she would leave the hospital alive… On Wednesday Vic was looking out for her son…What a brave woman my child is.

Vic was discharged from hospital this morning.  It is Thursday.

Vicky is super-human!