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4th of January 2013

4th of January 2013

For a long time after Vic had breathed her last breath I lay next to her.  I touched her face and hugged her close to me.  Something I could not do in life as I may have fractured a bone or two.  Everybody left me alone with Vic.  I was so grateful for that precious time with my angel child.

I washed Vic and dressed her in her favourite pyjamas.  It was so difficult trying to dress her limp body.  Although I knew it did not matter anymore I was scared I would hurt her.  Years of conditioning I suppose.  I was shocked to see that a large part of her body had already discoloured.  Her right hand shoulder, her back and the top of her legs were black and blue.  When I washed her little body at 7am that morning, a mere 3.5 hours earlier, only her little toes had started discolouring… Her back was still so warm from the fever that had racked her body.  Her hands, feet and face were cold to the touch. 

I brushed her beautiful hair. 

Then I realised that the boys could not come home until Vic had been “removed”.  I phoned Siza to pronounce Vic and the undertakers and requested that they send their people to come and fetch my child.  I lay with her for a further 30 minutes.  I held her tight and cried for her.  I just wanted to die.

Siza, the angel of mercy arrived…. She was so matter of fact about Vic’s passing.  She put cotton wool in my child’s mouth because Vic’s jaw had relaxed!  I wish I never saw that!

Just before 1pm the undertakers arrived.  I was torn.  I did not want her to go but I could see that her beautiful soul had left her body.  It was no longer my beautiful baby girl who lay in that bed.  In death Vic looked like a stranger… yet I felt that if Vic left that room she would forever be gone.  Strange…..

The undertakers walked into Vic’s room.  They were so smartly dressed in dark suits, white shirts and red ties. 

They hugged me and said “When you are ready… We can wait”.

I remember thinking “I look so ugly when I cry.  These strangers can see me cry!”.  I nodded and they wheeled in a gurney type “bed”.

They meticulously folded up the outer cover to reveal a plastic sheet.   They lowered the gurney to the same level as Vic’s bed and took her from my arms…

Someone said “Be careful.  She breaks bones easily…”

They lay Vic on this horrible plastic sheet and covered her in it.  I wanted to die.  I still want to die just thinking of it.  My beautiful baby girl, who only deserved Egyptian cotton, wrapped in hard plastic!!  They quickly replaced the cover and zipped it close.  I think my sobs were driving them mad.

Vic looked so tiny on that darn gurney!  Tiny and dead!!

Minutes after one my baby girl left home for the last time.  Never again would she grace us with her presence.  Never again would she shuffle down the passage, never again would we hear her laughter or her cries of pain.

Vic left home – forever.

 


11.1.2012

11.1.2012 The last photo I ever took of Vic

On Thursday night I slept from 12 until 3.30.  I woke up with a start, and it was Danie’s watch…. He was sitting on a chair next to Vic’s bed.  Tears brimming in his eyes. 

“I have been timing her breathing” Danie said.  “Her breathing is shallow – every 5 minutes she takes a deep breath.”

“I read about it” I said.  It is called Cheyne-Stokes breathing”

We sat in complete silence counting the shallow breaths between the deep breaths.   I counted 25 breaths between every deep breath.

“It is changing” I said

My brother came through just before 5.  “Why did you not wake me?  I was supposed to be on duty from 4…” he said

“I could not sleep” I said

The three of us again just sat and listened to Vic’s breathing.  She was motionless and her eyes were slightly open.  Her feet, hands and arms were cold.  The rest of her body was burning up with fever – 40+ degrees C.  Her little toes had started discoloring.

At 7 O clock I washed Vic.  I had started cutting open T Shirts so her little chest was covered.  I was too scared to move her – scared that she would fracture and that it would cause her more pain.  I put deodorant on her and baby powder.  A light spray of Estee Lauder’s “Beautiful” finished off her beauty routine for the morning.

At 10 o’clock Lee had to leave.  She had a meeting that could not be changed.   She cried when she left.

I lay next to my beautiful child.  My hand was on her heart and my head right next hers.  I could hear her breathing becoming more and more shallow.  Leon arrived.  The three men stood at the bottom of her bed.

I whispered words of comfort and love to Vic – non-stop….

“I love you angel child…  There is nothing to be scared off….  It is almost over baby!  I love you so much” I repeated the words over and over again.

I could feel her little heart beating softer and softer under my hand.

“She is going” I said

Her little chest hardly moved.  Her breathing was so shallow!  And then it stopped!  For a couple of seconds there was no movement.   No heartbeat.  No breathing.  And then a tiny little flutter…and then nothing!  Just nothing!!

I heard someone wailing.  It was a terrible sound.  It was me.

Part of me had just died.

 


100_7451

Where do I start?  How do I begin a farewell when I still can’t believe you’re gone?  How do I say goodbye to a part of my soul?

The day you were born I experienced this UNBELIEVABLE rush of love.  I was smitten from the first second I lay eyes on you.

You came into my life and changed me forever.  Over the years people have complimented me for being a good mother but I truly cannot take credit for that.  You were born good, and great and amazing.  You were the one who taught me lessons in life.  I believe you are an angel God sent to teach me.

You taught me love.  You taught me honesty.  You taught me to love unconditionally.  You taught me how to forgive and how to be strong.  You are the strongest person I have ever known.  You gave me strength when I was weak.  When times were sad and tough you reminded me to be grateful for the small things in life.  You taught me how to be myself.  Most of all you taught me about life and how to live.

When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die you taught me it was more important to feel and grow like any other child than to have me hide you under my wing.   It was so important to you to live.  And that you did.  You gave birth to not one beautiful baby but two!  You mothered the boys the way you lived life – with a passion.

You are the bravest person in the world.  You rewrote medical history.  You defied death for so many years… You mocked bad news and a poor prognosis…

 

You made me so proud.  You have always been my greatest pride and joy.  At school you excelled as a pianist.  As a mommy you were an example to all.  As a dying person you were brave beyond words.

I’m not sure how I can live this life without you.  You worried about me just as much as I worried about you.  You told everyone how worried you were that I would not cope without you.  You fought so hard to stay alive.  You fought until you gave your very last breath.  You did not want to leave your boys.  You lived for your boys.

You often said you were scared people would forget you…

No-one will ever forget you.  You made an incredible impact on the world.  You left two monuments of your love and mothering skills.  Your sons will honour you every day of their lives with their actions.

Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come.  It is ironic that you were Stepping Stone’s first death…

Two weeks before your passing you  started seeing angels.  You saw Gramps, Uncle Dries, your father and Auntie Marlene.  Then a week before your passing you said “My whole room is full of angels”  You fought to stay alive every single day of your life.  Eleven months ago you called a family meeting and told us that you had decided enough is enough.  No more surgeries.  No more hospitals.

Over the past 11 months you made your final wishes known.  You planned your memorial service.  You spoke to the boys about what was important.  I personally got a long list of do’s and don’t’s.

Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body.  But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!

The day you were born you filled my entire life.  You were always my first and last thought.  I feel numb and as if I am in a bubble.  You will be happy to know that we have been surrounded by love and support.  But it still feels as if the world should have stopped because you left it.

Vic, I miss you so much already and I don’t know if I can take this pain anymore.  But then I think, how can I be sad when I know you’re in a better place?  How can I be sad when you brought me so much happiness?   How can I be sad when God is already working miracles through you?  How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother?  How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes?  I thank God every day for the time we shared together.

Baby I promise you today we will be the support system for the boys you wanted.  We love them so much.  No-one in the world can ever take your place.  We promise we will keep your memories alive.  We will honour our promises to you.

So now we must bid you farewell.  It is your time to run, free from pain and suffering.  We will always love you.  We will never forget you.

Rest in Peace my Angel Child. 

 

 


Yesterday I posted on “time”.  Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying 

Some of the stages of dying start to be discernible a few months before death occurs.  

 Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm. 

 Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods.  This year she relived every minute of her father’s final journey… Vic has started living in the past.  

 I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.

 Vic no longer eats big meals and I seldom hear her say “I am ravenous”.  Due to the 81 abdominal surgeries and multiple bouts of septicemia  Vic’s absorption is very poor.  (Poor absorption = BIG appetite!)  Vic used to have the appetite of a horse – always nibbling and scrounging for food.  Now it is sheer discipline that keeps her eating.  She knows she cannot have medication without eating first.  Strange thing is that she is not really losing weight.  Hospice says it is due to the high levels of cortisone she takes…  I have been told by Hospice not to worry about her loss of appetite.  Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….

 The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria.  Our bodies actually start relaxing into this stage of dying. 

 Vic still drinks a fair amount of coffee.  She used to drink it warm but now she dozes off before she has finished her cup of coffee.  She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.

Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep.  It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side…. 

 Reduced appetite and increased sleep is called “Signposts for dying”.

 A couple of weeks ago Vic was very emotional.  She would tear up without any reason.  This stage has passed.  It is as if her tears cleansed her soul. 

 Vic is battling with loneliness.  She hates being alone.  If she could she would have one of us around her all the time.  She often complains that we do not spend time with her.  We do spend a lot of time with her.  She just dozes off and then we leave to carry on with our lives…  The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey

 Vic is not in good shape at all.  She is suffering severe cramping and nausea that is not responding to any of the medication.  The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning.  She also suggested that Vic be admitted to Hospice In-Patient’s.  Vic and I firmly declined…

 It is obvious that Vic has one or other infection.  I think it is the abdominal sepsis.  She seems flushed and feels hot and cold.  The thermometer does not reflect her running a fever.  This is obviously something as Ceza mentioned it to the doctor.  She explained that this happens when the auto-immune system is compromised.  I have tried to Google it but without too much success.  I will ask the doctor tomorrow morning.

 Vic is in terrible pain tonight.  I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even.  She whimpered in her drug-induced sleep….

 I know the shutting down process has started.  Not because Hospice told me but because Vic told me. 

 Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!

 

 


A pensive Vic…. 2011

Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz.  This post elicited some comments – mainly from Vic.  Vic has started reading the odd post of my blog.  In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post.  I find that I have become guarded in what I am writing.  I am thinking that I should blog about stuff that may allay Vic’s fears….

Yesterday Vic asked  “Mommy, I know what we believe in but what if there is more pain after I died?”

“You read my blog?” I asked.

“Yes” Vic replied.

“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”

“I know that Mommy but what if I am still in pain… What if the pain does not stop?”

“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind.  That is what the post is about…..”

Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop?  What if your pain does not stop?”

Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.” 

sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”

“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.”  http://thedrsays.org/2011/03/

I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind. http://thedrsays.org/2011/03/25/the-one/

Vic so often tells me how worried she is about the family.  She worries about how the boys, her dad and I will cope.  Whether we will cope…. whether we will be able to get over her eventual passing….  Andrew and sbcallahan write about their fears… for their loved ones.  It is a fear that all terminally ill people appear to have.

My Mom died a bad death!  Two weeks after major surgery she died an agonizing death from septicemia   We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain.  God alone knows what went through her mind because she was ventilated.  When my Mom finally died we were so relieved.  We were relieved that her suffering was over.  We were traumatized by the dying process not her death.

As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years.  For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae.  We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.

So baby, if you read this post, know that we will miss you.  We don’t want you to leave us behind but we want your suffering to end.  We will continue to love you until we are reunited one day.  You have to trust us that you will always be “my baby” and the boys’ mummy.  But know that we will be grateful when your little body is freed from its pain and suffering.  You will be at peace…  You will not suffer more pain after death.  We will mourn you but we will also be at peace…  We will think of you and smile…

It is okay to let go my angel child.


Image

http//www.scientificamerican.com

Today I read heart wrenching posts of bloggers who are in so much pain!  Katie Mitchell’s post filled me with a deep-seated sadness and a horrible, familiar feeling of helplessness.  I am so sad and angry for all the pain out there.

Katie blogs as follows:  Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and three days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell just to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thought and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing.

http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water

I shivered when I read this post and for a while I was blinded by tears.  I do not cry easily. I reread the post…. How is it possible that one young person can suffer so much pain?

It is a basic human right for chronically ill patients to receive palliative care services while they are receiving life-prolonging or curative treatments…. Why is pain treated with so much disregard by the medical profession?  Is it because people on the other side of the prescription pad are inadequately trained or like me they have never experienced pain?

Doctors are taught that pain is a sign of illness.  In their quest to find and treat the cause, they often neglect to treat the pain.

Vic was treated by the pain clinic for the past five years.  The head of the department is a professor of Anesthesiology.  Vic’s surgeon has been operating on her for the past 10 years and performed at least 60 of her 80 operations.  He knows how little of her intestines are left….  So does the professor.  Yet both these doctors chose to ignore this important factor when managing Vic’s pain.

At best her absorption is extremely poor and we constantly battle malnutrition.  We fluctuate between mechanical obstructions and diarrhoea.  400mg of MST twice per day just accumulates above the heavy fecal loading or is literally being flushed from her system within a very short period of time.  Combine this with severe vomiting bouts…. Often we lose tablets, either end, which is still totally intact…. Maybe the Jurnista worked because it is a slow release tablet that absorbs differently to the MST.

“In simple mechanical obstruction, blockage occurs without vascular compromise. Ingested fluid and food, digestive secretions, and gas accumulate above the obstruction. The proximal bowel distends, and the distal segment collapses. The normal secretory and absorptive functions of the mucosa are depressed, and the bowel wall becomes edematous and congested. Severe intestinal distention is self-perpetuating and progressive, intensifying the peristaltic and secretory derangements and increasing the risks of dehydration and progression to strangulating obstruction.” http://www.merckmanuals.com/professional/gastrointestinal_disorders/acute_abdomen_and_surgical_gastroenterology/

intestinal_obstruction.html#v890928

Now with Hospice the team has realized that her tissue is too poor for subcutaneous morphine, tablets don’t absorb, morphine patches cause skin irritation….Now I administer morphine injections into the skin.  At least the Hospice team is looking for a solution and we have had more good days in two weeks than we had in six months!

In my book every single person is entitled to proper pain management.  In the past, management of chronic pain has often produced unsatisfactory results. For approximately 80% of the world’s population, pain relief when needed, is a right yet to be realized.  One of the chief reasons for this stems from misunderstandings about the pharmacological characteristics of morphine and other opiates.  Furthermore, in an attempt to limit the opium trade, barriers were put into place, to prevent people from accessing pain medications.

Morphine is an opioid.  A psychoactive chemical which has been used for centuries to treat acute pain….

A number of medical schools no longer teach opioid prescribing. Doctors inexperienced in the use of opioids do not know how to initiate, titrate, and withdraw the medication. Faced with undesirable outcomes in patients (e.g., respiratory depression after a rapid increase in dose), physicians have become reluctant to prescribe these medicines. Recent studies have proved conclusively that as long as the patient is in pain they would not develop a psychological dependence on the drug.  It is encouraging that the recent increased interest in the clinical pharmacology of symptom control has demonstrated that it is possible to use morphine safely and effectively, even in patients with advanced disease.

I have seen with Vic that freedom from pain actually prolongs life and allows the body to heal or recuperate.  It is virtually impossible for Vic to die of a morphine overdose even if the dosage is increased substantially.

The human suffering due to lack of pain relief is an affront to human dignity!

In South Africa a large portion of our population is HIV positive.  They live in rural areas where there are no doctors or pharmacies.  If they are lucky there may be a clinic with a nurse….  A doctor’s prescription is needed for morphine.  No doctor = no morphine = painful death.  In syrup form it is cheap!

What a cruel world we live in! When a young girl is fearful of seeking medical help in a first-world country it is truly a disgrace.   “I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.”

I am grateful to the Hospice team!  I am grateful that Vic has been spared further suffering.  We cannot prevent death only unnecessary suffering!

“Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.  Then you start thinking who would care…if one day they woke up-and you weren’t there.”   Unknown

I would like to list some of the wonderful blogs on pain that I follow slavishly.

http://fullcircledme.wordpress.com/2012/09/20/myths-about-pain-meds-vs-addiction-or-dependence

http://now.tufts.edu/articles/world-hurt-pain

http://ohwhatapain.wordpress.com/being-treated-like-an-addict

http://ohwhatapain.wordpress.com/2012/09/26/flares

http://walkingthroughpain.wordpress.com/2012/09/28/ahhhhhhh/

http://connectivetissuedisorders.wordpress.com/


“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…


The boys visiting Vic in hospital 28.8.2012

Mommy, I’m not afraid of dying.  It is the pain that scares me…”

The four most common fears of the terminally ill are:

  1. That death will be painful.
  2. Loss of dignity and control.
  3. That loved ones will be damaged and unable to manage
  4. If children are involved that they will not be looked after properly.

Death will be painful

Vic the same physical, emotional, and spiritual needs as everyone else.  Her biggest fear is however the pain that will be involved in her inevitable death.  As distressing as the physical pain, Vic battles constipation, diarrhoea, nausea, vomiting, weakness, loss of dignity and loss of appetite.

The average physician and pharmacist’s concern is addiction!  So what?  Addiction at this stage of the game is the least of my problems.   I do however believe that Vic has become morphine resistant.  In hospital last week Pethidine and Perfalgan worked well.   This is one of the reasons why it would be great to have Hospice involved in her pain management.

The Pain Clinic is great but they see Vic every couple of months.  In the past 10 months I have collected her monthly morphine script on 7 occasions.  Thank God they have enough empathy for Vic and enough realisation of her health situation to give me the script. The problem is how much more than 400mg of MST (morphine) twice a day can they prescribe??  Imagine if I had to drag her to the pain Clinic every 28 days…

I honestly believe that family involvement is imperative with someone as ill as Vic as she or any other terminally ill person simply cannot manage these situations alone.  Family members closely monitor the effectiveness of pain management.  I take Vic’s vitals a minimum of 3 times a day.  Her blood pressure and heart rate are clear indicators of where her pain levels are at.   I know her body better than any other person, nurse or doctor… I cannot imagine a terminally ill person having to fight for pain medication.

Loss of dignity and control.

Vic desperately wants to participate in ordinary daily activities such as being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favourite TV show; to hold her children.

Imagine just for one minute your mother having to help you bath, apply deodorant, dress and undress…  Vic has to endure this indignity every day of her life.

Nights are especially poignant.  Sleep difficulties abound, not only because of physical pain but also because of fear of sleep, fear of not awakening out of that sleep.  One night spent with a dying person could teach all of us, in some measure, the depth of human loneliness, anguish and fear which our own dear ones experience in the brief span of life left to them.  Vic sleeps badly at night.  She wakes every two hours from pain and then she is too scared to go back to sleep.  She refuses to take a sleeping tablet.  At night Vic is at her most vulnerable…  I am so scared that she will fall at night whilst we are sleeping.

What if Vic is nauseous and chokes in her own vomit sleeping?

That loved ones will be damaged and unable to manage

Vic worries about the family’s ability to cope with her illness and eventual death.  When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…

Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”

No amount of reassurance will comfort her…Vic in time will have to let go.  She knows how deeply we love her and what void her passing will leave in all our lives.  If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?

Vic is quite hard on the boys (for their own good I must add).  She always says “I am your Mother not your excuse”

If children are involved that they will not be looked after properly.

Vic believes that no-one can ever love the boys the way she does.  That is true.  I am not a particularly “oochy goochy” person.  At times I believe I failed Vic as she has an emotional neediness that scares me.  I attended 12 different schools in my life and maybe this is why I battle to form emotional attachments.  I don’t have many friends.  My family is everything to me.

Vic however often says that she is happy that she moved back home as she has seen how settled the boys are.  They are truly happy living with us.

Vic knows that I will care for the boys for the rest of my life.  We will guide them and provide for them in every which way.  We love the boys with all our hearts.

The question that remains is whether she trusts us enough to let go of this pain filled life where she has lost all control and dignity?  I pray that she will…


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!!


I WANT MY CHILD BACK!!!.


Yesterday morning I teared up – again.  Danie asked “And now?  What’s wrong?”

“Just missing Vic” I said

“Shame” he said with sadness in his voice.  “I miss her too”

We spoke about how my grief had changed over the past four months.  Today it is exactly four months since my precious child died.  I keep using the words “death and died” and not the gentler “passed”…  I do that because death is harsh.  My child DIED, she is DEAD.  My pain is as real as it was 4 months ago.  My grief is however no longer as transparent as it was to the world.

Four months ago when Vic died my body physically hurt.  My heart was physically aching.  The pain was new.  Now my grief is in me, part of me as if it is a limb or organ…  My grief is hidden from the world. If I did not tell you, you would never know.

To the world – I seem to have adjusted to the loss of my child.  I am “functioning, smiling, carrying on with life”… People are so relieved that they no longer have to cope with my raw grief…

Earlier tonight I read this on Facebook -https://www.facebook.com/TheGrievingParent

“I never knew my mind could be dominated by a single thought every day for years and still not get in the way of the progress of my life. The hands on the clock continue to turn, and the sun rises every morning. 

Even though the grief is not on the surface, the missing is as strong as it ever was. We can’t explain it, but we want to share it. We might not break down, but the strength of the grief never fades.”

We just keep on living with it and do the best we are able to do.”

I miss Vic more today than I did four months ago.  I keep looking at photographs of the past couple of years so I can REMEMBER her suffering; I re-read my blog to REMEMBER her suffering; I keep trying to find solace in the fact that she is pain-free.  It is becoming more difficult to see the positive side of Vic’s death.   My mind is blocking out the horror of her suffering!  I am remembering the good times only.

I hear you say “It is good”  No, It is not good!  If I forget her suffering I will never accept the “need for her to die” element of Vic’s death.

The night that haunts my sister

The night that haunts my sister

My sister shared her heartbreak with me…She said that one night when she slept with Vic she woke up to hear Vic talking to me.  She said Vic was crying and saying “Mommy I am so sore.  I can’t do this anymore”  Lorraine said she kept her eyes shut and pretended to sleep because she could not deal with the moment… Why am I forgetting??????  On the 13th of November I posted “Will my poor baby’s hell ever end?  If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!!  This has come to an end!” http://tersiaburger.com/2012/11/13/signposts-for-dying/

I want my child back with me. I want to hold her, tell her I love her.  I want to hear her footsteps in the passage; I want to hear her voice…

I WANT MY CHILD BACK!


wonderful team member readership award

I admit it openly and honestly – I LOVE getting awards.  I think that deep down we all crave recognition, acceptance and love.  I have found this on Word Press.  I have met WONDERFUL people who have loved and supported me for the past year.   It is a very powerful thing to be recognised by a blogger I find not only incredibly inspirational, but funny and thought-provoking too.

Shaun from Praying for One Day awarded me the Wonderful Team Membership Readership Award,which of course I graciously accepted.  Shaun is one of my favourite bloggers who has become a wonderful friend. The first post of mine that Shaun ever read was http://tersiaburger.com/2013/01/25/vic-has-left-home-for-the-last-time/  Sometime later Shaun wrote me an email or a comment, I am unsure which it was…He wrote that after he read my post he and his partner Dawn cuddled and sat in silence for a long time weeping for Vic.  Shaun always leaves a comment, hug or word of encouragement.  Shaun has been awarded this award 6 or 7 times and with good reason.  He is a Wonderful Team Reader who truly deserves this award!

So here are the rules:

1. Display the logo on your page.

2. Finish the sentence: A great reader is…

A great reader is… someone who takes the time out of his/her busy life to read my ramblings of grief, leave a comment, hug, advice… A great reader is someone who reaches out from cyberspace and cries with me, laughs with me and cares for me.  A great reader is my wonderful WordPress friends!

 

3. Nominate 14 readers I appreciate.

  1. Uma Girish at http://grammarofgrief.wordpress.com/ for her helpful blog on grief and surviving loss
  2. http://wordsfallfrommyeyes.wordpress.com/ is about a mother’s love for her son
  3. http://verbalbanter.wordpress.com a wonderful blog about life and it’s irritations and frustrations.
  4. http://drbillwooten.com/ is a blog filled with good music and wisdom.  Bill you are a kind and gentle friend.  Thank you
  5. http://everyonehasastory.me is a blog of hope and despair, healing and pain.  Excellent read.
  6. http://throughthehealinglens.com  is about a bloggers battle with debilitating, chronic pain. 
  7. http://thedarkest13.wordpress.com/ is an intelligent blog filled with good values, friendships, pain and love. 
  8. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has magical writing skills.  She is an amazing friend.  Thank you BB
  9. http://idealisticrebel.wordpress.com/ – Rebel is amazing and takes on the world! A brave blogger who is a great friend.
  10. http://jmgoyder.com/ – My precious friend Julie who has so much pain and loss to work through. 
  11. http://picturesofsilverbyjanice.wordpress.com/category/sculptures-silver-art-jewelry/  Janice is the kindest person.  She makes beautiful jewellery and my Christmas Gifts will come out of her innovative jewellery pieces.  I am gifting the boys their Mommy’s fingerprint to wear around their necks – close to their hearts.
  12. http://valeriedavies.com/  A gutsy, wise lady who is a friend and an amazing writer. 
  13. http://walkingthroughpain.com/ writes about “invisible illness” such as RA/Lupus/ Fibromyalgia.  This is a brave blogger who knows and lives with chronic pain!  Please support and encourage her on this lonely journey. 
  14. Tracy Rydzy – http://ohwhatapain.wordpress.com is another brave warrior battling chronic pain.

4. Inform the readers with either comments or pingbacks.

These are just 14 of a long list of treasured blogger friends who are truly worthy of this award.  There are many, many other bloggers whom I treasure and who inspires and supports me in my grief journey.

Thank you to each and every one of my blogger friends!!

Reblogged from The Blurred Line:

High five it girls! Tis is for every woman whose ever given birth naturally.

This is the funniest video I have ever seen!!  Thank you Victoria Bruce.

I had a total meltdown today. Maybe because I heard last night that a couple are adopting baby Izak. Izak is the beautiful 8 month old foster son of Lani and Tom’s. The poor little angel was abandoned as a day-old baby at a taxi-rank.

This precious baby boy stole my heart and proved to me that one little boy can truly change peoples hearts.

But, the time has come for him to be blessed with loving parents in a permanent home. He is one of the lucky few.

We live in a country with hundreds of thousands of orphans and abandoned children. We do not have enough orphanages to accommodate all our orphans and abandoned children. The children continue to live in their shacks or homes after the death of their parents and often the head of the family could be as young as 11 years…

DIscipline is one of the few problems that arises from the situation. Children grow up with no social skills, no education and often suffer brain damage and poor physical development due to malnutrition.

One way or another the communities take care of their own. We seldom hear of a child starving to death or dying from exposure.

Baby Izak was one of the lucky ones to end up in a loving foster home. He looks at his “mommy” with absolute adoration in his soulful eyes. He loves touching my face and is a great hugger!

He is an intelligent, happy baby. He is ahead on all his milestones. His biological mom has AIDS, but thanks to the ARV program of our government Izak is healthy and not HIV positive!

I am sad that he is leaving our family. I am devastated that for the 2nd time this year I have to say goodbye to someone that I love dearly. I pray that he will be loved and be allowed to develop to his full potential. I pray that his new parents will protect him.
On Friday we have to say goodbye to this precious baby. I won’t go! Last Saturday he fell asleep on my lap. I want to remember that. I cannot bear to hold him even one more time just to have to let him go too.

So baby boy, I hope that you will know that I love you. I will always carry the memory of you in my heart. I am grateful that you enriched my life. I will never forget you. I hope you will continue to change peoples lives and perceptions. I know you have the potential to become the president of our beautiful country.

In my heart you are my grandson and will always be.

I love you so much!

nPosted from WordPress for BlackBerry.

pampering


I am blessed to be able to spend 4 days at a Spa with my little sister. I will be absent until Thursday. I look forward to the pampering, fresh air and mindless relaxation.

nPosted from WordPress for BlackBerry.


Today, the 12th of May 2013, is my first Mother’s Day in 38 years without my precious Vicky.

I attended my sister’s birthday party.  I smiled and participated in her birthday and Mother’s Day celebrations.  I know that worldwide millions of other mothers joined me today in quietly reflecting on our grief and sadness.

I know that the family and especially Danie were worried about how I will handle Mother’s Day.  On Friday morning Danie asked whether he could get me flowers for Mother’s Day as he has done for the past 22 years.  I declined.

I know that even though today is dedicated to mothers, entire families will be affected.  Fathers too experience grief and yet the world seems to forget about them.  Maybe it is because men are so stoic in their grief.

I saw this on a Facebook site – Grieving Mothers, and it really shook me…

552833_515481991830996_736572417_n FB GRIEVING MOTHERS

I know that Danie is grieving for Vic.  He is grieving with the boys and me.  He is grieving for us.  I know he fears that he lost part of me…. 

Today I share Mother’s Day with my fellow club members – the grieving mothers of the world.  Tonight I will reread 30 odd Mother’s Day Cards and drawings that I received from my precious child over the years.  I will cry on my own.  I will burn candles for my child and for the moms of Henry, Tommy, Raymond, Phillip, Klysta,Jason, Alex, Matthew, Caitlyn, Morgan, “B”, Jason David, James, Jesse, Steven, Graham, … I will weep for my beautiful grandsons who did not have a mommy to wish a “Happy Mother’s Day” today… I will mourn my Mom – a woman of great strength, beauty and love.

Yet I am filled with gratitude and love for my stepchildren and grandchildren; the messages of love and support that started coming through from friends, family, Vic’s friends and even the boys friends mothers…

My phone started pinging early this morning.  I ignored the pings.  Danie sneaked into my TV lounge where I was sleeping on the sofa.  I closed my eyes and pretended to be asleep.  Then my phone rang, and I could not ignore the call… It was Lee-Ann.  She said “HI T, I am just phoning to tell you I love you…”  I burst into hysterical tears.  Poor lee!

Danie brought me letters that the boys had written me… Jared wrote ”Dear Oumie, I know we don’t have a reason to celebrate mothers day, other than to remember Mom and all she meant to us.  So I have decided that we are changing the name to Oumie’s Day.  We got you a sign that says “HOME” .  That is because this is OUR home, and it always will be.”

Jon-Daniel wrote: “Happy Mothers Day Oumie” It may not be the happiest time of the year for you.  Although your very own child is up in Heaven, you have GRANDchildren.  Nothing will ever fill the gap – Mommy’s gap!  This is the first year you will be celebrating Mother’s Day without the One who made you a Mommy.  It is difficult,you must know I am always here.  After all you are our grandmother.  The word says it all, “grand” – great, awesome, amazing.  And “Mother” – well, no need to describe that.  Everybody knows how special a mommy is.”

Henk, second eldest grandson wrote “Ouma, it was a difficult year but you are always here to help and love.  You always have a smile no matter how bad things are for you.  We are grateful for it, and that is why we love you so much and always will do.”

Yesterday little Simone put her arms around me and said “Thank you for being my Ouma.  Thank you for spoiling us.  I love you very much.  My words are your Mothers Day present.”

I have had beautiful messages of love and caring from all my stepchildren.  It has truly filled me with joy.

I also read a card that Vic gave me in 2000 “We have all changed a lot through the years Mommy but one thing will never change – and that is the love between us.  It is a special bond that keeps us close no matter where we are.  I love you more than words can say.”

I know that today my precious child and Mom are celebrating Mother’s Day together.  I am grateful for all the years we were able to celebrate together.  I love you and honour you both today.  Two amazing mommy’s…

Thank you God that today is over!!!!!

Mother's Day 2008

Mother’s Day 2008

Mother's Day 2012

Mother’s Day 2012

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In honour of Mother’s Day I would like to share some of my favorite Mother quotes.

Pilgrim Peace  “Pure love is a willingness to give without a thought of receiving anything in return.”

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No language can express the power, and beauty, and heroism, and majesty of a MOTHER’s love.  It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star. ~Edwin Hubbell Chapin.

Vic and her boys 1999

Vic and her boys 1999

A MOTHER is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.~Washington Irving.

A man loves his sweetheart the most, his wife the best, but his mother the longest. — Irish Proverb.

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The natural state of motherhood is unselfishness. When you become a mother, you are no longer the center of your own universe. You relinquish that position to your children.  Jessica Lange.

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MOTHER’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.   Agatha Christie.

A mother_s love

All women become like their mothers. That is their tragedy. No man does. That’s his. -Oscar Wilde,The Importance of Being Earnest

When your mother asks, “Do you want a piece of advice?” it is a mere formality. It doesn’t matter if you answer yes or no. You’re going to get it anyway. -Erma Bombeck

i-am-a-parent

Motherhood is neither a duty nor a privilege, but simply the way that humanity can satisfy the desire for physical immortality and triumph over the fear of death. -Rebecca West

A mother’s love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking. -Helen Rice

A mother’s arms are more comforting than anyone else’s. -Diana, Princess of Wales

Vic and I in healthier days

Vic and I in healthier days

The hand that rocks the cradle Is the hand that rules the world. -W. R. Wallace

Vic and her boys on the beach.

Vic and her boys on the beach.

Mother’s Love for Her Very Sick Child

I know that I would do all things for you.

My spirit would always take care of you.

And when I die and leave this world behind.

You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.

You have always remained right here in my heart.

I will forever whisper in the wind

Unconditional love that’ll forever stay within.

If only I could go wherever you go

So I could do things I need to do for you.

Since I can’t, the best sacrifice I can give

is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart

‘Cause I know that you don’t know where to start.

I’m transferring all the pain inside of you

Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear

This greatest pain to let you go, I swear.

Know in your heart that my love will forever stay

Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you

Of all the pain and tears inside of you.

No need to worry for all your pain will be gone.

It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.

If you only knew how I fought for you each night.

Just remember that there are signs everywhere.

So look around and acknowledge that they are there.

God said to me that love will always prevail.

And each day there is a tale for you to tell.

If you could already see the signs before your eyes.

Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two

When you least expect it, it is said to you.

It may also be the people that you have met.

Places, names, or things that you kept.

God told me to tell all these things to you

So happiness would set in and peacefulness, too.

I’m always here, and I’ll always love you.

I never wanted you to be in pain. It’s OK for you to go.

Read more: http://authspot.com/poetry/a-poem-about-a-mothers-love-for-her-very-sick-child/#ixzz1zxfdNb9o

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Today, two years ago my best friend died.  On the one hand it feels as if a life time has passed and yet it is as if it was yesterday…

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There are only a handful of people who come into your world, and touch your life in a dramatic fashion.  Some of the people are just flickers of light during a long life, while others are a consistent glow for years.  For me, Marlene was my consistent glow.

I met Marlene 27 years ago.  We immediately started chatting and never stopped!  For 25 years Marlene and I were inseparable.  We would be in one another’s company for hours and within 10 minutes of leaving one another, one of us would remember something else that we forgot to mention and call the other.  Our first words would be “Hi  Poepies, I forgot to tell you…….. “

Marlene was one of the most beautiful people I have ever known.  Nobody looked good next to her.  At most we merely enhanced her beauty…  Marlene was totally unaware of the effect her beauty had on people.  She was very, very hard on herself.  I miss that beautiful laughter of hers – nobody could laugh (or cry) like my friend.

25 years of friendship!

25 years of friendship!

Marlene was a human SPCA.  It is ironic that her heart, that was so big, eventually let her down. 

I was privileged to deliver her eulogy.  At her memorial service I saw a sea of faces.  Old friends, new friends, school friends, work colleagues, family.  Marlene had compassion that was scary… always wanting to help – to do… The word “Love” is a verb; not an adjective…Marlene knew that.  She lived that knowledge.

She always made her friends and loved ones designer gifts.

Marlene and I agreed many years ago that we would “make” gifts…I thought we would bake biscuits or something… My birthday was the first “homemade” gift event…my dear friend made me a porcelain doll with photos of Vic, the boys and Danie in a necklace….  How could I ever compete with that???

My poceline doll

My porcelain doll

Marlene’s personal best friend had to be the phone…She LOVED speaking on her cell regardless of whether she was driving or not…she spoke on the phone every spare minute she had.  Marlene and Sonja spoke from the crack of dawn… I am a late starter, but we spoke until late at night.  On the Tuesday of her death I spoke to her at 10:45am – I started phoning her just after 3pm because I was in Marlene chat withdrawal…Needless to say I think Marlene was already chatting to angel Gabriel and boy did she have a lot that she wanted to tell him…

Christmas was Marlene’s favourite time of the year.  For decades our families celebrated Christmas together.  Her home looked like SANTALAND..  Marlene was an amazing cook.  She had a standing rule – everyone had to have two helpings of food to qualify for dessert!  She was an amazing hostess.

Marlene helping me "get married"

Marlene helping me “get married”

Marlene had a relationship with God that was a very personal relationship.  I don’t know anyone who worked so hard at herself – Marlene strove for perfection…The day she died Marlene was at peace with her God.  Marlene is exactly where she has wanted to be for so many years – at the feet of her Heavenly Father.

Marlene was so happy the last couple of weeks of her life – the business had picked up, she had forged beautiful friendships with some of her clients and that was a source of great joy to her;  Marlene was at peace in her friendships and was on the brink of a new life with an old friend.

The perfect hostess, the life and soul of a party!

The perfect hostess, the life and soul of a party!

Marlena, I love and miss you.  I still feel lost without you.  Thank you for a lifetime of chats, unconditional love, all Vic’s school concerts you sat through.  Thank you for your loving support with Vic over the years; the times you kept me company when Vic was in hospital.  Thank you for “tolerating” my busy house.  I KNOW my house drove you crazy with all the grandchildren.   Thank you for allowing me to believe that I made better pancakes and fudge than you did…I still don’t trust those statements, but I will give you the benefit of the doubt!

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Vic's Kitchen Tea...

Vic’s Kitchen Tea…

My dearest friend, I hope you are resting at the feet of your Heavenly Father; I hope that you are experiencing the peace that you craved on earth.  I hope you and Vic have organized a wonderful anniversary party in Heaven celebrating the Ultimate Event in your life.

Thank you for being here when Vic passed.  She told me before she lapsed into a coma that her Gramps and you were in her room; that you were there to guide her on her final journey…

Marlene and Vic at Marlene's 50th birthday Party

Marlene and Vic at Marlene’s 50th birthday Party

I am selfish when I say “I wish you were here”.  I miss you little sister and best friend!

Most precious friend

Most precious friend


I come from a long line of exceptional mothers.

My Mom died 15 years and 11 months ago.  She was tiny and petite.  I remember my school friends telling me that my Mom reminded them of a fairy princess.  My Mom dressed beautifully, had perfectly manicured nails and hair…. She taught us the finer things in life.

My parents

My parents

My Mom always worked…she was bright and diligent in her profession as a bookkeeper.  She was proud to be a career girl.  Mom knitted beautifully and made glorious tapestries!

The surprising thing is that we did not ever feel deprived because Mom worked.  I was proud of my mom.  As a family, we went on wonderful holidays every single year of our childhoods.  We were always the well-dressed kids on the block…We got new bicycles, and we had a beautiful home.

As a child, I thought we were rich.  Of course, I knew that many of my parent’s friends lived in seriously nice homes, but somehow I never thought those people were wealthier than we were.  Today I realize that I grew up in a middle-class home.  As a child, I felt protected and RICH!  How amazing is that?

My mother was a remarkable lady.  She brought us up to be compassionate, honest people; to never let the sun set on an argument; to love unconditionally, to protect our own… We learnt from her strength, her respect for others, her courage, faithfulness and her love for God.  Mom was around for the happy and sad times.

My mom as a young woman

My mom as a young woman

“As mothers and daughters, we are connected with one another. My mother is the bones of my spine, keeping me straight and true. She is my blood, making sure it runs rich and strong. She is the beating of my heart. I cannot now imagine a life without her.”
― Kristin HannahSummer Island  http://denacronholm.com/

My Mom died after she developed septicaemia post-operatively.  It was two agonizing weeks!  We sat next to her bed willing her to fight, get well…. To die…

When my Mom died I thought my life was over.  The grief was overwhelming.  It was my first “real” death.  My gran had passed many years ago, but that was my mom’s grief… I was young, ambitious and climbing the corporate ladder.  My life went on.  I remember my Mom crying at silly times because she was missing her mom.  I remember thinking “surely it can’t be that bad?  Old people die…”

After my mom died I read these words, A daughter without her mother is a woman broken. It is a loss that turns to arthritis and settles deep into her bones. ” ― Kristin HannahSummer Island.  My mom grieved for her mom until the day she died.

I must add that my father was an amazing gentleman.  He supported my mom on every level.  He treated her like a queen and tolerated no less from us children.  I adored my dad!  But today’s post is about my mom and motherhood.

I only understood my mom’s love for us after I gave birth to Vic.  It was an all-consuming love.  I held my tiny baby girl in my arms and knew that she needed me for every one of her needs; she could not survive without me…  My mom and I were so close after Vic’s birth.  We shared a selfless love that only mothers can understand.  As mothers, our children come first; nothing is more important than our child’s comfort, happiness and safety.

Mom, my siblings and I

Mom, my siblings and I

“Womanhood is a wonderful thing. In womankind we find the mothers of the race.  There is no man so great, nor none sunk so low, but once he lay a helpless, innocent babe in a woman’s arms and was dependent on her love and care for his existence. It is woman who rocks the cradle of the world and holds the first affections of mankind. She possesses a power beyond that of a king on his throne.
…Womanhood stands for all that is pure and clean and noble. She who does not make the world better for having lived in it has failed to be all that a woman should be.”
― Mabel HaleBeautiful Girlhood: A Timeless Guide for Christian Adolescence

I know there are mothers out there that really suck…  I know because I have been told by friends that they were never protected or defended by their moms.  I am so sad for people who do not have a good relationship with their mothers.  I was blessed with an amazing mother and that enabled me to be a good mother to my child.  My child was an amazing mother to her sons.  She loved her boys with every fibre in her body.  She suffered excruciating pain and indignity to stay alive… Vic could have given up much earlier in her life.  She fought to live right until the end…why???  It is easy – to bring up her beloved boys herself!

Vic reading to her boys

Vic reading to her boys

I am so proud of the mother Vic was.  She packed a lifetime of parenting into the little time that she had with her boys.  Jon-Daniel’s (14 years) BBM message this morning read “I really do miss you Mommy.  I miss the laughs we had and the time we spent together, and I miss talking to you.  Love you Mommy.”

A moment in the sun in the Hospital courtyard

A moment in the sun in the Hospital courtyard

The boys are level-headed, clean-living boys.  They have taken their mother’s words to heart “I am your mother not your excuse”.  Academically they are doing well.  Emotionally they are coping.  They are beautiful boys and truly do Vic’s memory honour.

I am the last mother alive…there will be no next generation mother to carry forward this miracle of motherhood.  The boys may become fathers, but I am the last of a long line of great mothers.

I will think of it on Sunday when millions celebrate Mother’s Day all over the world.

 

 

 

 


WordPress Family AwardI am so honoured to receive this WordPress Family Award from not one blogger but two!!  How blessed can I be?

Thank you dear Jane @ http://johannisthinking.com and Shaun @ http://prayingforoneday.wordpress.com/    Both Jane and |Shaun are great bloggers, and their follower figures reflect it.  Jane has 375 followers and Shaun 696……I think the reason why they have such great stats is because they care!!  They comment, email, care and share.  Their blogs are filled with real-world life, happiness, sadness, pain, compassion and laughter… They share their joys and sorrows.

So this award is about being part of the Word press Family!

I started blogging almost a year ago.  It was just after my BFF and Dad’s one year anniversary and Vic had made the decision to let nature take its course.  It was a difficult time for the family.  We were helplessly watching Vic die – little by little every day.  Her pain was unbearable.

My blog started off cautiously focussing on Vic’s pain.  Tracy @ http://ohwhatapain.wordpress.com/ opened my eyes Vic’s pain – I could “feel” Vic’s pain after I met Tracy; Katie Mitchell @http://connectivetissuedisorders.wordpress.com/ – an incredibly brave young woman who encouraged me when she is in so much pain of her own…  I could “see” life through an ill person’s eyes…”feel” her pain through the eyes and words of other Chronic Pain Sufferers.

I grew more comfortable sharing and started blogging more about my fears and emotions… Ultimately about Vic’s death and our grief as a family.

Today I have 210 followers.  Many of them have become my cyber family!  They love and care for me, my family and my precious Vic.  They offer hugs, love, compassion, sympathy and advise.  They care unconditionally.  They do not criticize my writing, punctuation, spelling or grammar…

I have found friendships and love in cyberspace that I did not know existed.  It has also opened my eyes to the fact that there are good people in the world.  People who care….  It enabled me to open my heart and life to real life friends too…

I love my blogging family!  Love you guys.

I know there are slightly more than 10 nominations.  I PRAY I did not omit a precious friend’s blog.  If I did, please do not be offended.  Blame it on the flu.

Now for a description of the award in the words of the Creator Of The Award:

This is an award for everyone who is part of the “WordPress Family” I started this award on the basis that the WordPress family has taken me in, and showed me love and a caring side only WordPress can show. The way people take a second to be nice, to answer a question and not make things a competition amazes me here. I know I have been given many awards, but I wanted to leave my own legacy on here by creating my own award, as many have done before. This represents “Family” we never meet, but are there for us as family. It is my honor to start this award.” from Shaun @ http://prayingforoneday.wordpress.com/

 The Rules:

1. Display the award logo on your blog.
2. Link back to the person who nominated you.
3. Nominate 10 others you see as having an impact on your WordPress experience and family.
4. Let your 10 Family members know you have awarded them. There is a real problem here since this award spread like wildfire but I think I can find ten who should be recognized
5. That is it. Just please pick 10 people who have taken you as a friend, and spread the love.

My blogging friends and family as follows…

  1. http://jmgoyder.com/ Julie
  2. http://thedrsays.org/ - Dear Sandra
  3. http://myownheart.me Len
  4. http://valeriedavies.com/  Valerie
  5. http://prayingforoneday.wordpress.com/ – Shaun
  6. http://johannisthinking.com – Jane
  7. http://justiceforraymond.wordpress.com/
  8. http://grannyscolorful.wordpress.com/ – Gloria
  9. http://myjourneysinsight.com/  Judy Unger
  10. http://behindthemaskofabuse.com/

10. http://hopethebean.wordpress.com/ - Mel Lefebvre

11. http://maryrussell12.wordpress.com/ – Journey through Grief

12. http://deaconfamilyblog.wordpress.com/ Wendie Deacon

13. http://talktodiana.wordpress.com/

14. http://janevanwyk.wordpress.com  -  chdmum

15. http://mymomsmemoirs.wordpress.com

16. http://doilooksick.wordpress.com/

17. http://furrynuff.wordpress.com/ Victoria Bruce

18. http://grammarofgrief.wordpress.com/ – Uma Girish

19. http://drbillwooten.com/ – Bill Wooten

20. http://jesussavingmefromme.wordpress.com/ – Michelle

21. http://sophieandemile.wordpress.com/ – Lucinda Elliot

22. http://barefootbaroness.org/ BB

23. http://picturesofsilverbyjanice.wordpress.com/  Janice

24. http://connectivetissuedisorders.wordpress.com/ Brave Katie Mitchell

  1.  http://ramblinsofagrievingmom.wordpress.com/

27. http://smilescavenger.wordpress.com/

28. http://whatcherylsaid.wordpress.com/

29. http://dlmchale.com/

30. http://missmorgansmom.wordpress.com/

31. http://idealisticrebel.wordpress.com/

32. http://lymphomajourney.wordpress.com/

33. http://poemattic.wordpress.com/

34. http://wordsfallfrommyeyes.wordpress.com

35. http://ohwhatapain.wordpress.com/

Thank you to all my friends and followers for their support, comments and awesome posts!

You have made my journey bearable.  Thank you for allowing Vic and I into your lives! Thank you for restoring my faith in mankind…

 


                          "The pain passes, but the beauty remains".                                --Pierre-Auguste Renoir (1841-1919)

“The pain passes, but the beauty remains”.
Pierre-Auguste Renoir (1841-1919)

I have flu.  I get ill once in 5 years and I am a ninny.  I do not handle pain and discomfort well… I whinge, moan and groan until I am better…

This time I have embraced my flu.  I can stay in bed and there is no pressure for me to get up…. I can just lie in bed with my eyes closed and it is okay!  For the first time since my precious child died I don’t have to communicate, talk or pretend.  I can just be sick!!!!  I have spent four days in bed not having to talk, smile or pretend….

I am sick to the core of my soul – not only from the flu but from heartbreak.  I was able to feel the loneliness and emptiness that permeates my life since Vic died.  For four days I have not had to smile or live – I could lie in bed and hope to die.

There are days that I really do cope.  There are days that I am able to smile and laugh.  Most of the time I live a lie…

I have made peace with the fact that my precious child’s suffering is over.  I know that never again will she fracture vertebrae from vomiting, scream from pain, whimper because she does not have the strength to scream… But all I have done is learnt to accept that Vic was amputated from my life.  I still have to learn to live without the amputated part of my body; the pain of the missing part of me continues to taunt me…

I miss my child so much!  I want to love and hold her.  I wish I could have protected her from the ravages of Osteogenesis Imperfecta and doctor error!  No, I don’t have guilt…I did everything I possibly could for my baby girl. I just desperately miss her!  I miss her company.

I am hoping that the pain will pass…I do remember the beauty of my precious Vic all the time.  The wonderful mother and daughter that she was; kind and gentle; incapable of malice…Her beauty will remain with us for ever.

Tomorrow I will get out of bed and carry on living.

The Thank You Award


Thank you to my dear friend Shaun (and his beloved Dawn) at  http://prayingforoneday.wordpress.com/2013/04/07/the-thank-you-award-3/ for this beautiful award. 

Thank You Award

During Vic’s brave journey I have had phenomenal support from Cyber Space.   I want to use this opportunity to thank each and every one of my 209 followers for caring, leaving hugs and encouraging comments.  I know that Vic’s journey had an effect on many people’s lives.  Some found it difficult to follow our journey and others persevered.

 

Some people wrote me emails, many left encouraging comments, others prayed for us, some wrote beautiful poetry tributes to Vic, some dedicated songs to her…..Many just left “hugs” …. Some of you lit candles for my child, cried with me…

I need you to know how much I appreciated your support, advice and love.

So, contrary to the rules of the award I am not awarding the award to six bloggers.  I am awarding it to all my blogger friends.  Thank you for your love, compassion, advice, kindness, love and support.  I could never have gotten through this terrible time without your love and support.  From the bottom of my heart “THANK YOU!”

I would be remiss in thanking my beautiful Vic for the honour and privilege of being your Mom.  I love you with all my heart and always will.

RULES :

1. As usual a big thank you and a link back to the person who nominated you.

2. Mention 5 things you would like to do with your life, no matter how mad or tame.

3. Nominate six bloggers and say why they have left their mark on you. Hence the name “The Thank You Award”

4. Let them know.

5. Say a big THANK YOU TO EVERYONE ON WORDPRESS!!

 

5  Things about me that are Mad or Tame 

1. I got a motorbike for my 50th birthday

2. I would rather travel to a war-torn country like Afghanistan than any European country

3. I want to be the oldest person ever to parachute

4. I love travelling and exploring on my own

5. I will eat oleander leaves if I am I ever diagnosed with Alzheimer’s.

 I thank each and every one of you.  If you are reading this PLEASE accept the award and pass it forward.

I now nominate all my Blogger Friends for the THANK YOU AWARD… I thank you all! 

With love from my blog to yours…..

 

Reality Blog Award


Reality Blog Award

http://doilooksick.wordpress.com/2013/01/06/the-reality-blog-award/

Rachel Meeks is a respected professional writer and filmmaker. She was diagnosed with endometriosis three years ago.  Her goal for this site is to raise awareness for all invisible illness, and to provide support, answers, and smiles to her readers.  Vic suffered from severe endometriosis and I know how painful the condition is.  Rachel has become a good friend.  Thank you for this award Rachel.  You are great!

I dedicate this wonderful award to my precious child.  Vic, you were so real, amazing, lovely, inspiring, touching and your energy was contagious.  Half a breath of oxygen in your little lungs and you would be organising a party!  Love you Angel Child!

The rules that accompany this award are:

1) Show appreciation of the blogger who nominated you and link back to them in your post.

2) Add the award logo to your blog

3) Share 7 things about yourself

4) Nominate 5 – 10 or more bloggers you admire.

5) Contact your nominees to let them know!

Seven Things About Me:

1. I am a wannabee blogger who needs to publish a book on Vic’s journey

2. I have a horrible singing voice – it runs in the family.

3. I have decided to reach out to people – I have closed people out of my life long enough

4. I find knitting very relaxing.  I can only knit squares but it is cool.

5. I am considering starting a blog on weight loss – I need to lose 15 kgs and a blog may keep me motivated

6. I am a gypsy at heart – I was born with wings on my feet.  I love travelling!

7. I have more cyber friends and support than “real life” friends and support.

The Nominees:

  1. http://mommyoftwinangels.wordpress.com
  2. http://zyoshiko.wordpress.com
  3. http://poolsidemusings.wordpress.com
  4. http://barefootbaroness.org – wonderful friend and blogger!
  5. http://allinthedayofme.com
  6. http://joanekaufman.com
  7. http://thedarkest13.wordpress.com/
  8. http://lifethegoodthebadtheugly.wordpress.com/
  9. http://melancholicallymanic.wordpress.com/

10. http://sophieandemile.wordpress.com/ – hope you accept dear Lucinda!

11. http://picturesofsilverbyjanice.wordpress.com/ – Janice is a brilliant artist – go check her blog.

Please check these blogs out.  They are really cool.  Thank you all for your continued support and friendship!

Interesting Blog Award


Interesting Blogger award

Big thank you to Shaun, you are a great friend and I happen to be Chairperson of your Fan Club!  Shaun at  http://prayingforoneday.wordpress.com/2013/04/25/interesting-blogger-award/  thank you for this amazing award.  It is my first too!

Award rules.

  1. Thank the person who nominated you
  2. List 5 random facts about yourself
  3. Nominate a minimum of 5 blogs for the award
  4. Ask the nominees 5 questions of your choice
  5. And finally, let them know you have nominated them

5 things about myself

1. I would like to be my friend if I could not be myself

2. I would love to visit Russia – mid winter.

3. I hope to retire in 4 years time

4. My favourite song is “Never Alone” by Jim Brickman and Lady Annabelle -

5. I love reality TV shows and Word Games

I now nominate 5 or more bloggers for this award 

1.    Uma Girish at http://grammarofgrief.wordpress.com/ for her helpful blog on grief and surviving loss

3.    http://verbalbanter.wordpress.com a wonderful blog about life and it’s irritations and frustrations.

4.    http://drbillwooten.com/ is a blog filled with good music and wisdom.  Bill you are a kind and gentle friend.  Thank you

 

6.    http://throughthehealinglens.com  is about a bloggers battle with debilitating, chronic pain. 

 

 

 

8.     http://untraveledroads.wordpress.com/a personal journal of coping with and transcending pain

 

  • 9.    http://geeton1.wordpress.com/ is an amazing blog  of two people, Toni and Gerry, who share a passion to stop Child Exploitation and to bring Missing Kids and Adults, back home safely.

 

10. http://barefootbaroness.org is one of my favourite blogs. BB is a charming, gentle woman who has been an amazing friend.  Thank you BB.

 5 questions for you all

1. Who would you like to be, if you could not be yourself.?

2. If you could visit ANY place on Earth, where would it be?

3. What is your favourite Movie?

4. What is your favourite Song?

5. Why did you start blogging?

Thank you once again Shaun.  You are a wonderful friend and blogger!!

 

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