Today was a bad day


Vic and her boys Christmas 2011
Christmas 2011

When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.

So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.

Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!

An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.

My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!

As usual I digress.

Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her.  She fears that the boys will abandon her and look to us, the grandparents, for parenting.  She fears losing the only “position” in life that she has left – the position  of “Mother”.  It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.

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!

Today was a bad day – again.

Happy birthday Mommy! 3.8.2012


Until death do us part….

My tiny, petite little mom was born on the 3rd of August. She died on the 3rd of June 1997 from septic shock. My earliest memories of my mother are that she was a career girl. My Mom worked before it was fashionable for women to work. She loved having a career. I remember how proud of her I was as a little girl. My Mom was the “Bookkeeper” at a large German company. I used to love walking to her office after school.

My Mom had the tiniest little feet. She wore a size 3 shoe. But boy, could she put that tiny little foot down!

My Dad was fiercely protective of his wife. They were absolutely united against us kids. When Jared was a couple of weeks old we went to Bloemfontein to show him to my folks. My Mom played in a Bowls competition that Saturday afternoon. When Mom got home she was on such a high. Her team had won and she had a brilliant game. Mom sat on Dad’s lap; their faces were close together when she told him about the game. At one stage she threw her head back and they laughed….. Deeply in love, committed to one another, united in their love.

Mom died 3 months later….. Dad was absolutely devastated!

Today it is my Mom’s birthday. I wish that I could sit and have a cup of tea with her and just chat. I wish I could apologize for thinking it was absolute rubbish that she could not pluck her own eyebrows because she could not see that close….. That she had started losing her hearing in her late 50’s…

Muslims have a saying “Paradise lies at your mother’s feet”. At the feet of my mother I learnt all the values that I hold dear in my life. I wish I could thank her for the example that she set for us children. I wish I could thank her for teaching us the value of family, loyalty and unconditional love. I wish I could thank her for being this absolutely amazing grandmother to Vic. I wish I could thank her for supporting me through all my mistakes, troubled times, heartaches and joys.

I know that Mom held onto life until we as a family, one last time, confirmed her love of us to her….. We were standing around her deathbed and her time was so close! Yet she would not let go. Johan, my baby brother, said to her”Mamma, it is okay to go. You know we all love you. We know you love Daddy, Tes, Lollo and me….” Within seconds her battle against septicemia ended….

My Mom was such a brave warrior. She suffered ill health the last 20 years of her life. Mom had this amazing ability to bounce back after surgery. She too suffered chronic back pain. She adored Vic. Vic spent so much time with my parents. She was the beginning and the end of my mom’s life. I truly believe that Vic got her fighting spirit from my Mom. I often look at Vic and see my Mom. Some many of the little things that my Mom did Vic does….. Where blood does not run it gushes!

My Mom was very close to her Mother. We were very close to my gran. Mom was absolutely heartbroken when my Gran died. I think she never truly came to terms with her mother’s death. It took me 5 years before I could speak of my mom without crying. We have a family legacy of close mother and daughter relationships…

A Mother’s Love – Author unknown

A Mother’s love is something
that no one can explain,
It is made of deep devotion
and of sacrifice and pain,
It is endless and unselfish
and enduring come what may
For nothing can destroy it
or take that love away . . .
It is patient and forgiving
when all others are forsaking,
And it never fails or falters
even though the heart is breaking . . .
It believes beyond believing
when the world around condemns,
And it glows with all the beauty
of the rarest, brightest gems . . .
It is far beyond defining,
it defies all explanation,
And it still remains a secret
like the mysteries of creation . . . 
A many splendored miracle
man cannot understand
And another wondrous evidence
of God’s tender guiding hand.

. Happy birthday my dearest Mommy. I love and miss you! I know when Vic’s time comes; you will be one of her angels guiding her Home!

Dèjè vu


Image

Today at 16:20 we saw the doctor regarding the results of Jared’s blood tests.

When I saw the pain in Vic’s eyes it propelled me back 35 years ago when she was diagnosed.  I saw the same pain in Tienie’s eyes when Vic was diagnosed with Osteogenesis Imperfecta.  Well not exactly that day, but the day his mother told him that his paternal father had died at the age of 35 from an undiagnosed disease that had OI symptoms…

When Vic decided at the age of 21 to get married Tienie and I really weren’t happy.  We felt that she was too young and the way forward with OI would only get more difficult.  I spent a lot of time talking to Vicky and Colin about OI and the fact that they could never have children.  Vic wanted to get married and those of you that know her will know that once she has made up her mind nothing can or will stop her.

The day of the wedding I sobbed my heart out.  She looked so beautiful!!  I had a premonition of impending disaster… but then again most mothers feel that way when their daughters get married… Vic was just so young and had such a poor prognosis.  I had been a child bride and knew how difficult it was.

Vicky fell pregnant six weeks after her wedding.  The Sunday night they came to tell us I sobbed and sobbed!!  I immediately made an appointment for Vicky and Colin to see the Wits Dept. of Genetics on the Wednesday.  I went with and until today remember the feeling of doom descend on me when the genealogist strongly advised Vic to have a legal abortion.  The baby had more than 50% chance of being born with OI or at best would be a carrier or the OI gene.

Vicky refused flat out to have an abortion.  She said the baby was straight from heaven.

We went to see the gynaecologist and I saw the baby’s heartbeat.  Two weeks later Vic was in hospital with a threatening miscarriage.  She fought for her baby through-out her pregnancy.  I fought with her because of her baby…  I was fighting for Vic’s life.

Tienie was so angry because Vic was pregnant that he refused to speak to her for months.  I went and saw him at his office at cried.  I begged him to put aside his anger and support her – we may lose her in childbirth… Tienie looked at me and said: “We all grieve in our own way.  I wish I could cry…)

Throughout the pregnancy I was petrified that Vic would give birth to an OI baby.  On Christmas Day Vic went into labor… On the morning of the 26th Vic had a cesarean section and gave birth to a healthy, albeit ugly, little son.  When they ran down the theatre passage with Jared in an incubator I caught a brief glimpse of him.  A rush of love, like I have never experienced before, overcome me.  I cried from the wave of love.  Colin stood crying next to me and we just hugged and clung to one another…

As a baby Jared was very ill.  He spent a lot of time in hospital.  At one stage the doctors thought he was going to die – he battled viral infections until he was about 5.  At the age of 5 Jared developed a sugar problem whilst Vic was ventilated https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/Osteogenesis Imperfecta … 22.2.2002 to 28.5.2012.  Doctors said it was stress related.

At nursery school Jared started injuring ligaments, twisting ankles.  It got worse as he tried to participate in sport when he started fracturing ankles.  At age 13 he was diagnosed as diabetic.  On 27th of July Jared had a Nissin repair https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/ and https://tersiaburger.com/2012/06/28/a-vicious-cycle-of-nerves-2/.

Last week Jared developed chest pains again.  ECG, CT scan, Blood tests and X-rays…Result of CT showed numerous kidney stones.  Results of the bloods read as follows “Low positive ANA titres are often non-specific and may be seen in elderly individuals, following viral infections or tissue damage, or in patients with malignancies.  It may also be seen in normal individuals, relatives of patients with connective tissue diseases, as an early marker in individuals that may later develop a connective tissue disease and in association with other auto-immune diseases, e.g. rheumatoid arthritis”  We will firstly see a Urologist to resolve the kidney stone issue and then a Physician.  Maybe it is nothing to be worried about.

When I got home today Vic asked me what was wrong.  I tried to lie to her but she saw right through me.  When I showed her the blood test results she just sobbed.  I saw the pain that Tienie felt all the years of her life, the guilt of knowing that a faulty gene has passed from parent to child…

Jared is strong and resilient.  I have faith that he will get through this trying time stronger than before.  I am confident that it will not be too serious.

I wish with every fiber in my body that Jared could have a sterilization operation that this curse can come to an end.  One way or another I am going to break this child’s heart when I have the “Please do not consider procreation until there is a cure or a way of isolating the faulty gene…”  We have touched on it but I am afraid it will have to be a serious chat.

My heart breaks for my child.  I wish she could go through this phase of her journey without this pain and worry… I wish that I had never said to her “I don’t know if I can go through this again…”  I wish I never heard her say “Mommy do you want me to go to a home?”

I hate my life.  I hate the life my poor child has to endure.  I hate the life that Jared may have to live.

For some dying is hard work. 18.7.2012


Jon-Daniel, Jared, Tersia, Vic, Dad
Less than one month before my Dad died.

“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”

The journey of dying has many stages – I have heard it called check-in stations.  I know that some people bypass some of the stages/stations.  Some people take their time and linger.  Some people die quickly and easily, like my beloved Dad and best friend Marlene.

My dad suffered with a terminal illness called Alzheimer’s.  It was dreadful seeing that proud, dignified man’s brain slowly degenerate.  He lived with us for the last 18 months of his life.

After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc.  On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt.  Dad played with the little ones and at the end of the afternoon abruptly got up and walked off.  We let him be – he got tired of people and confused after a while.

An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat.  He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge.  Obviously my Dad’s balance was deteriorating.  I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…

On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day.  He recognized no-one and his legs no longer received the walk commands…  Every time he got out of bed he would fall.  I was sleeping on the second bed in his room so I could hear him get up.  I would put my arm across his chest so I would wake up when he moved.

On the 4th of May 2011 Vic was admitted to hospital for operation number 80.  On the 6th of May Vic spent 6.5 hours in  theatre with her colostomy reversal.  The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic”  However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure.  Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted.  Even the pain of the Elastoplast in her neck is too much post-op.  Apparently it is not a common error but it happens.  With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…

By the 9th of May I was absolutely exhausted.   I had been unable to spend any time with the boys.  And they really needed me.  Between Vic/hospital/work/ Dad and the boys I was absolutely torn.

That night I did not hear my Dad get up during the night.  He fell again.  We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly.  Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU.  Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead.  Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.

My dearest friend was dead.  She had simply had a heart attack and died!  I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!

The next day I met with the medical team.  Dad appeared to be in a coma.  The physician said that Dad had pneumonia.  The Neurologist confirmed that Dad was in the Severe advanced stage of AlzheimersThe Specialist surgeon wanted to operate on my Dad’s aneurysm.

I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia.  There would be no operation.  The Physician agreed with my decision.

On the 13th it was my dearest Marlene’s funeral.  The next day I discharged my Dad from the hospital and brought him home.  We had received the Hospice bed and Hospice had evaluated and accepted dad as a case.  On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously.  Dad battled to swallow and I was pretty distressed about his liquid and food intake.  Dad’s core body temp had dropped to 34.5 degrees C.  Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake.  On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …

I played his favorite classical music and tried to keep him comfortable.  I treasured every moment that I sat and listened to his labored breathing but I was at peace.  There was nothing unsaid between the two of us.  Yet I was so sad…I did not expect it to happen that soon.

On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe.  Twenty three days after his first fall…

Why the detailed timeline in this post?

Some people take their time and linger. Some people get it over with quickly. For some dying is hard work.  But all of us are heading towards the same destination. Passing through our physical stages of dying.  Into death…

For a long time Marlene wanted to die.  She did her best and yet only when it was her time did she go.  Not on her timing, terms or conditions.  But when her time came it was quick and hopefully not too painful.  Marlene wasn’t ill.  She was sick of life!

If I could ask my dad I think he would have been surprised at how quickly he died.  Do I regret my decision to not allow aggressive treatment?  No!  I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!

Vic has lingered for 10 years…  It is really hard work for her…

A Mother’s Love for her Sons


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!!