Relax, it’s just a bend, not the end!


We are seeing a GP tomorrow morning regarding Vic’s arm.  Both her arm and hand are so swollen that I am concerned that she may actually lose her arm.  It has now been more than a month from the day that she fractured her arm.  When I bathed her tonight I removed part of the dressing that is protecting her arm.  Her arm is still black and blue and horrifically swollen.  I am convinced that she has pressure sores under the cast.

Today was a truly exciting day… (Relax, I am being facetious)

We phoned the Orthopod that treated Vic in hospital.  Sorry, he (Dr Y) can only see Vic next week!  We then phoned her original Orthopod (Dr V) with the permission of Dr Y.  Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y.  We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him.  “We will not even allow you into Dr’s rooms without a letter.  Doctor V is too busy to phone.  Get a letter if it is so urgent for you to see Doctor!”

Well!!!  What the hell do you do?  You cannot force a receptionist to allow you to see a doctor.  Even if you force your way into the consulting rooms you cannot force a doctor to see you.

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The fact that Vicky is terminal does not give any doctor permission to wash their hands off her.  It is written into our Constitution that every citizen of this beautiful country has the right to medical care!!  “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.

The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”

I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.

Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms!  Why only tomorrow?  She is too fully booked today to see us today…

Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working.  Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?

I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!” 

Is there hope after all?  I am cautiously optimistic!

Tomorrow afternoon we see the Urologist.  Strangely I am at peace about Jared.  God cannot be that cruel so I trust in a positive outcome!

JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure.  In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle.  She coughs throughout the night and end up sitting upright to breathe easier.  When I get home she is so excited that she has a coughing spell.

JD follows me where ever I go.  If I step back I step on her.  She sleeps in my room.  JD and I have a system worked out.  When I come out of the shower she is already waiting for me.  When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have.  I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!

I do not want JD to suffer any further.  Tomorrow morning she will go to the parlour one final time.  In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven.  Vic and Jared want to go with her.

I am a coward.  I do not have the resilience and strength to take her.

Vic and JD watching a movie

For some dying is hard work. 18.7.2012


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…

via For some dying is hard work. 18.7.2012.

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…

I am dying 9.7.2012


Vic and JD. (JD = Jared’s Dog)

It is 20:00 and Vic has been fed, changed, powdered and medicated.  She screamed in pain when I changed her.  Seeing my child sick and in pain, every day of her life kills me.  I am dying, painfully slowly from my child’s pain.

I don’t know how much longer I can handle this.  The chronic pain I am used to but this new pain is pushing all of us over the edge.

Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic…  How nice is that!!  But I cannot.  I cannot leave Vic now.  Nobody knows her body the way I do.   It is too big a responsibility to hand over to anyone.    She needs lots of personal help.  Vic needs pain meds’ every four hours, day and night.  If she misses med’s she breaks through her pain levels and then it is disastrous.  What if she needs help during the night as she so often does?  What if she vomits and needs me?  No can do!!  I cannot desert Vic.  Until she breathes her last breath I will be by her side.  No matter how long it takes.

Many years ago I promised Vic that I would not let her die alone.

When Jesus was praying in Gethsemane his disciples fell asleep on Him.  I am so scared that I will fall asleep on Vic in her final hour.  I don’t think Vic is near the end.  I have been around dying people enough to know the signs.  But she needs me now.

Who is taking care of the caregiver? 5.7.2012


Who is taking care of the caregiver? 5.7.2012.

“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’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…

Vic regrets not going to Italy


Vic regrets not going to Italy.

Vic regrets not going to Italy 2.7.2012


Nothing in the world can ever prepare a parent for that moment  when the death sentence is pronounced over your beloved child.   I remember it as if it was yesterday.

Thank God Vic was in ICU and heavily sedated at the time.  Brendan told us in the passage of the Donald Gordon.  Colin and I went into shock.  We did not ask a single question.  We just looked at him … Mute for that dreadful, heart wrenching, moment.

Later that day Colin and I went to Brendan’s consulting rooms and spoke with him.  I had so many questions and he had so few answers.  He basically said that with the Osteogenesis Imperfecta Vic’s tissue had been affected very badly.  The intestines were very poor and she had very bad endometriosis and abdominal adhesion’s.  The adhesions were the biggest threat…it would almost certainly cause blockages of the gastrointestinal or urinary tracts.  There would come a stage when they could no longer operate or her little body could not take the strain anymore…

Strange Vic knew…when she eventually came round she knew that life as she knew it was over.

When I broke the news to her she was calm.  See, all her life she knew that eventually this day would come.

The doctor recommended that we get in touch with Hospice.  We did.  We had a family meeting.  Colin parents, Danie and I and Vic and Colin.  Colin went through an anger phase.  He felt let down… he thought they would grow old together.  They had two little boys aged 3 and 5…  So many challenges!  So many emotions.  So many medical bills!  In 2002 Vic’s medical costs were R3.2m.  ICU Pharmacy accounts ran into the hundreds of thousands of rands!

With terminal illness come HUGE medical bills.  As long as there is money the doctors will operate and treat, hospitals will admit and treat…   Colin and Vic eventually lost their home due to medical bills and Danie and I started taking additional bonds against our property.

When faced with the news that a family member has been diagnosed with a terminal illness, many people worry about what they should say and do. They want to help, but often don’t because they are afraid they will say or do something that will further upset the loved one.

Terminally ill persons have the same physical, emotional, and spiritual needs as everyone else. What they need most of all is to be cared about, not just cared for.

Someone said that they do not see Vic anymore as they had already said their goodbyes…they could not handle the emotional trauma of going through the goodbyes time and time again.  In their lives Vic no longer lives….

When the time comes I wish I could have a “by invite only” funeral for Vic.  If you cannot care about Vic whilst she is alive why on earth would you want to attend her funeral?  It has been 10 years and Image

Physical Care is certainly the most difficult part of the dying person’s journey as far as I am concerned.  The control of acute and chronic pain is the biggest challenge that we face.  Medication every four hours is a challenge.  The days are fine but the nights – well that’s a different matter.  It is easier to stay awake until 03:00 and then go to sleep.  Danie or the boys are up by 07:00 so I sleep in.  Getting enough pain medication prescribed is the BIGGEST challenge of all.  Vic’s medical is exhausted within the first two months of the year and thereafter is a nightmare!

The other issues that we have to contend with is constipation, nausea and weakness.   Often Vic is too weak to get out of bed on her own and needs help to get to the bathroom and back.  Showering and shaving her legs is a challenge.  Almost the biggest challenge is Vic’s hair!  Vic has a thick bunch of hair and she will not wash and towel dry it!  Her hair must be blow dried!

Vic went through many stages –  anger, sadness, anxiety, and fear.  It is strange that at first we all go into denial.  Even now I still do.  Vic said earlier this week:  ” Mommy, I am so happy I will be around for Jared’s confirmation.  I know I won’t be at Jon-Daniel’s confirmation”  I immediately retaliated and said “Of course you will be baby.  You just have to keep fighting”   Why did I feel compelled to make an empty promise?

Vic’s emotions are real.  Touch is comforting to her.  She loves being hugged, touched, kissed.  She appreciates the truth.

If it had not been for Vic’s positive attitude towards life and determination to bring up her boys herself, she would have died many years ago.

Vic is now tired and ready to die.

Vic regrets not going to Italy.  She desperately wants to go to Chaka’s Rock one more time.  She wants to see her boys grow up.  She wants to make a speech at their 21st birthdays!

As a family, there is nothing unsaid.  We love Vic and she knows it.  She will continue to live even after she stopped breathing.  We will honor her wishes for the boys and keep her memory alive.  Vic may stop breathing one day but she will always live in our hearts.

Vic’s fears 2.7.2012


Vic’s fears 2.7.2012.

A Mother’s Love for her Sons


A Mother’s Love for her Son’s.

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!!

Vic embraces life 23.6.2012


Today is a glorious, wonderful day!!  Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!

I say “seems” because she is ill.  By her own admission today, she is ill but she has decided to “live a bit”.  And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……

This child of mine is so stubborn!!  She truly does not know the meaning of giving up.  The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die!    In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story.  This is one stubborn lady!

A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…

What makes her strong?

Her Heritage

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Vic, My Dad, My Mom, Jared and I

Vic comes from a long line of stubborn Vikings.  Vic’s maternal grandmother was an amazing person.  She too was ill most of her life.  From her sickbed she “controlled” our family – as Vic now does.  My Mom certainly kept the family together.  Her immediate family was everything to her!  We only truly realized and came to appreciate her strength after her passing.  

My Dad was a wonderful caregiver and provider.  A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul.  He was a true gentleman who never let on that he did not know who you were.  Once, when he was hospitalized, I went to fetch him on his discharge.  When he saw me he exclaimed “My goodness, how wonderful to see you!  Imagine bumping into you here of all places…”  Dad lived with us…

This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up. 

Tienie, Vic’s biological dad, was an amazing person.  He lived life to the fullest – every single second of it!!  He did not ever want to grow old.  He wanted to die young.  He died young… He died living!  He hated sleeping.  Considered it a waste of time.  He was generous even in death.  He was an organ donor.

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 Vic and her father on her first day of school!

Tienie and I separated when Vic was very young.  He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic.  Vic’s paternal grandfather died from OI at the age of 35.  All the other paternal grandchildren are unaffected.  The only affected family member is Vic and now I believe Jared.   The curse of Osteogenesis lives on in my beautiful, innocent grandson!

Vic comes from a long line of people who lived.  It must be so hard for Vic to be trapped in a body that barely allows her to breath.  Imagine a life of pain with absolutely no prospect of recovery…

Vic is the greatest warrior of all!!   Living in the shadow of death has truly made Vic embrace life whilst she is still alive.  She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…

Vic embraces life 23.6.2012


Today is a glorious, wonderful day!!  Vic seems better and even walked down the passage to my TV Lounge and then she made us tea!!

I say “seems” because she is ill.  By her own admission today, she is ill but she has decided to “live a bit”.  And she is sick and tired of people telling her what to do… She concedes that we all mean it well but……

This child of mine is so stubborn!!  She truly does not know the meaning of giving up.  The one minute she is contemplating death and the next she is worried about who will inherit the dinner service when I die!    In a moment of anger Colin once said “Vic is too spiteful to die” – I don’t think she is a spiteful person but hard-headed – now that is another story.  This is one stubborn lady!

A while ago, in the early hours of the morning, I started a PowerPoint Presentation on “What makes her strong” I will share this with you…

What makes her strong?

Her Heritage

 Image

Vic, My Dad, My Mom, Jared and I

Vic comes from a long line of stubborn Vikings.  Vic’s maternal grandmother was an amazing person.  She too was ill most of her life.  From her sickbed she “controlled” our family – as Vic now does.  My Mom certainly kept the family together.  Her immediate family was everything to her!  We only truly realized and came to appreciate her strength after her passing.  

My Dad was a wonderful caregiver and provider.  A man of great wisdom who until the last two weeks of his life fought Alzheimer’s with every fibre of his body, mind and soul.  He was a true gentleman who never let on that he did not know who you were.  Once, when he was hospitalized, I went to fetch him on his discharge.  When he saw me he exclaimed “My goodness, how wonderful to see you!  Imagine bumping into you here of all places…”  Dad lived with us…

This is Vic’s maternal heritage. ..Brave, strong people who do not know how to give up. 

Tienie, Vic’s biological dad, was an amazing person.  He lived life to the fullest – every single second of it!!  He did not ever want to grow old.  He wanted to die young.  He died young… He died living!  He hated sleeping.  Considered it a waste of time.  He was generous even in death.  He was an organ donor.

Image

 Vic and her father on her first day of school!

Tienie and I separated when Vic was very young.  He could not accept the fact that the Osteogenesis gene was passed from his bloodline to Vic.  Vic’s paternal grandfather died from OI at the age of 35.  All the other paternal grandchildren are unaffected.  The only affected family member is Vic and now I believe Jared.   The curse of Osteogenesis lives on in my beautiful, innocent grandson!

Vic comes from a long line of people who lived.  It must be so hard for Vic to be trapped in a body that barely allows her to breath.  Imagine a life of pain with absolutely no prospect of recovery…

Vic is the greatest warrior of all!!   Living in the shadow of death has truly made Vic embrace life whilst she is still alive.  She grabs the good seconds, she does not wait for good minutes… She knows that her fragile health is a ticking timebomb…