Tag: Mother’s Love

Signposts for Dying


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 Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm.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

 

 

And Hospice says “Go!”


 

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South Africa is advertised as “Sunny South Africa” with beautiful white shores and blue skies.  Barbeque is our national pastime.  Today is an overcast day.  It is as if Mother Nature is preparing me for England’s grey skies, drizzling cold and wet weather.

By now I assume everyone has concluded that I got the go-ahead from Hospice to travel!

I am hopping, skipping and jumping with excitement.  I cannot wait to see my UK babies.  Not only see them but hug, kiss and hold them.

Vic is insisting that I go.  We are both fearful but I also realise that I desperately need a break.  There is never a perfect time.  Vic is very swollen and not well at the moment.  She is partially obstructed but we will clear it by Thursday.  The Hospice Sister will pop in every day to evaluate and monitor her and report back to me.

In the words of the Hospice Sister Ceza:  “Things are slowly going downhill.  Go now.  You need your strength for what lies ahead”.

Timing, as always, is an issue.  Vic is well enough for me to travel but on Monday it is little Yuri (youngest grandson’s) school concert, Simone (2nd eldest granddaughter) birthday and Lani’s (2nd eldest stepdaughter) 40th birthday in the week that I will be away.  I have still not seen Liza and Adrian…. On the other hand I will get to see the girls “trick or treat”, Chloe is on a week’s school holidays and I will watch the extravagant Guy Fawkes fireworks displays and bonfires being lit… I feel so selfish and caught between two fires.

I am scared for Vic, worried about the boys, guilty for Yuri, Simone and Lani and excited as can be about seeing Danie, Michaela and the girls.    On the one hand I feel so selfish.  On the other hand I realise that I need a break.  It has been a year out of hell!  On a daily basis the demands on me are increasing.  It sounds as if I am having a pity party and/or trying to justify my decision to go to the UK….Yes I am!

The Hospice Nurse will start on Wednesday evening.  I must shop for groceries and ensure all meds are in stock.  I must write up a medication schedule for the nurse….

Got to run!  Lots to do!  I will make it up to everyone….I hope!

I will only be 14 hours away from Vic….

 

Vic’s Roller Coaster….


 

 The Voyage
Located at Holiday World in Santa Claus, Indiana, this roller coaster is a wooden hybrid consisting of a steel structure and wood tract. The lift goes up 163 feet, before falling 154 feet, then up and down 107 feet, and once more up and down 100 feet. Not only that, it goes through five tunnels, and it is the second longest wooden roller coaster in the world with a run of 6,442 feet. The top speed for the roller coaster is 67.4 miles per hour, third fastest in the world among wooden roller coasters. If the drops and trips through the tunnels was not enough to make you cringe, there are three 90-degree bank turns. http://roadtickle.com/worlds-scariest-roller-coasters

The life of someone who is chronically ill can be equated to being on a roller coaster ride.  Physically (and emotionally), you can be up and hopeful one minute and down and despairing the very next. The illness inevitably takes unexpected and unpredictable turns. One disease can dispose you to or give rise to another. Cortisone suppresses the immune system and is used to treat inflammation.  Cortisone weakens Vic’s bones further and has resulted in her developing Addison’s….This is frightening.

Every chemical that enters your body has a side effect.  Correct and adequate pain control, a healthy diet, balanced lifestyle is needed to minimize the effect of the illness on your daily life.  Living with illness affects every part of your life and every significant relationship you have.

There have been times in the past couple of months that all Vic can do is lie in bed and breathe.  Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement.  There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milkshake.  She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused.  She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives.  Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.

Danie and I planned to go to dinner on Friday night.  Vic was not well so we decided we would go on Saturday.  On Saturday Vic had another lousy day.  She fluctuated between being confused and weepy.  She was up and down like a little jack in the box.  By Saturday night she was asleep on her feet.  The intestinal cramping kept her awake.  She was weeping from pain and frustration.

Last night Vic cried “Mommy, I am such a burden.  You don’t have a life because of me.”

“Sweetie you are not a burden.”

“I am” Vic sobbed.  ”You can’t even go to dinner with your husband because you don’t want to leave me alone.”

“Sweetie, it was our choice to stay home”  I said

“But I have ruined your life” Vic cried….

Jared spent the weekend with a friend.  The child never goes out.  The two of us are too scared to leave.  I suppose we have become overprotective control freaks.

I have come to realize that I must take a break. It is not only for my own sanity but for Vic and Jared’s sake’s too.  My protective behavior is a bad example to Jared and is causing Vic distress.  My entire family is concerned that I will “crack” under the pressure.

I hope to fly to England for just over a week to spend some time with my UK children.  I have so much to arrange.  I must sort out the toy cupboard in the girls’ bedroom to make space for a nurse; I must appoint a nurse; get adequate medication in; get Hospice to okay the trip; buy groceries to see the family through and cook a couple of emergency frozen meals..

Vic’s symptoms wax and wane on this roller coaster ride of hers. Her illness is slowly depleting her energy reserve. A cold or infection can overwhelm her ability to fight it and her overall health and functioning can change dramatically – very suddenly. There will come the day that we will not be able to clear the partial obstruction or to contain the infection…..

I hope that it will not happen whilst I am away.

 

When A Daughter Cries


http://halfmanhalfgreek.files.wordpress.com/2010/07/sad-woman.jpg

when a mother cries
her tears stab at her daughter’s heart
as they plummet to the floor

when a mother cries
he daughter cries too
because her heroine is wounded and she doesn’t know how or why
she cries because she cannot rid her mother of the pain
she cries most of all because she loves her mother

when a daughter cries because her mother cries,
her mother cries more
because her weakness has hurt her child
she cries because it hurts to know she’s the cause of her daughter’s tears.
she cries most of all because she loves her daughter

once the tears have ceased however
love remains
the love forever shared between a mother and her daughter

Portia Lane http://www.poemhunter.com/poem/a-daughter-cries/


	


	
	






	
	

		
Is there pain after death – post 2
	


	

		

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.

	


	
	






	
	

		
It did not hurt at all….
	


	

		

Vic and her boys on the beach.


He eased his body onto the mattress while pulling up the covers and rested his head on the pillow.  There are far too many memories of his selfishness, but he will not deny them; he will learn from them. That is both his prayer and his hope.  Mercifully, the memories were not all bad. He smiled as another one surfaced. http://thresholdofheaven.com/2012/09/27/now-i-lay-me-down-to-sleep/


This is an extract from a blog of a father’s journey after the death of his young son.  Like all parents he is wracked by feelings of guilt and inadequacy.


Shortly after her third birthday Vic developed a bad cold.  Her nose was running and I asked her to go wipe her it.  She looked at me and in her most defiant tone of voice said “No!  I won’t”.  I gave her a light smack on her bum.  She moved her little arm in front of her bum in an attempt to stop me … three of my fingers struck her arm.  She screamed!  I immediately knew I had broken her arm…


The x-rays showed that the ulna was broken in three places…. Imagine my horror, guilt, feelings of inadequacy and self-doubt!


I worked hard as a young mother.  I was young, divorced, a single parent climbing the corporate ladder.  My child had been diagnosed with Osteogenesis Imperfecta (brittle bone disease) and I needed a lot of money to keep Vicky alive and living a fair life.  She attended a private school.  Did I neglect her at times as a child?  Yes, I am sure I did.  Not because I wanted too but because I had to work extra hard for that bonus or the next promotion!


Did I abuse her as a child?  Absolutely not!  My neighbors and some emergency rooms did however think I did…  By her 3rd birthday she had had 40 fractures…


When Vic was a little girl there was no internet and Osteogenesis Imperfecta was a “new and extremely rare” disease.  I spend many hours, days, weeks even months researching OI in libraries.  I went from doctor to doctor.  I tried alternative medicine, physiotherapy and hormone treatment!    I have spent thousands of hours on the internet researching every single medical report, diagnoses, blood test result that Vic has ever received.  I have bullied doctors, nurses and anyone who ever dared cross our path.  An ICU sister once told me I am a control freak and that I feed off Vic’s illness!


I can however honestly say that I did my best.  I cannot apologize for the mistakes I made as a mother as, at the time, whatever decision I made, I thought it was in Vic’s best interest.


Am I special?  Absolutely not!  I only do what any other mother would do under the same circumstances.  I cringe when people say “oh you are so brave” or “Oh you are so special” or “What an exceptional mother you are.  Vicky is lucky to have you as a mother”.  Nothing could be further removed from the truth…  I am the one blessed with an incredibly brave, compassionate, brilliant child!  Vic has enriched my life so much!  If I could choose a life with a healthy (different) child where I could have a life of my own, I would not.  Vic is part of my journey.


I come from a long line of very good mothers…My Mom taught us the values of being a “family”, honesty, unconditional love, caring and nurturing… I am surrounded by good mothers.  Vic is a good mother to her sons.  Esther, Lelani and Michaela are good mothers to their children!  All my grandchildren have good mothers.


Mothers love the way love is needed.  If the child needs caring they get caring, if they need nursing they are nursed.  A mother’s love is love in its purest form.


When Vic was 10 years old she lied to me about a school test.  It was not the first time she had fibbed and I knew I had to punish her.  Lying is an unforgivable transgression!  I always told Vicky that it is better to face my wrath for 5 minutes than to lie to me and destroy the trust that we had forever.  If she lied I would ALWAYS doubt her…Remembering the broken arm episode and knowing that she knew that I was a pacifist at heart, I decided the worst punishment I could give her would be a smack on her bottom.  I made her lie on her bed, on top of her arms, and gave her three smacks with my slipper.  (It sounds so barbaric!)


She smirked “It did not hurt at all” and I sobbed….


I phoned my Mom and sobbed “I am such a failure.  I am such a lousy Mother!  My child is lying to me.  I failed as a mother AND I GAVE HER A HIDING!”


Mom quietly asked me “What can you do to be a better Mom?”


I replied “Nothing!  I don’t know what else to do! That is why I am phoning you!  I need guidance and advice!  Please tell me what to do!”


My Mom gently replied “You can never do better than your best!”


These wise words have remained with me all my life.


Good decisions or bad decisions…I did my best….


Right or wrong…I did my best…


 


 


 


 


 


 

	


	
	






	
	

		
Danie – the “Wind Beneath My Wings”!
	


	

		

Today my beloved Danie turned 74.  He is an absolutely amazing person.  He has the wonderful ability to love and to be loved.


I met this amazing man through mutual friends 24 years ago.  It was two weeks before his 50th birthday.  I casually asked whether he was going to have a big party and he said “no”.  He was newly divorced and did not feel up to a party.  In a moment of pity I said “Well, nobody should be alone on his birthday.  If you are not doing anything pop around for a glass of wine…”


He duly popped around for a glass of wine.  After a couple of glasses of wine I asked him if he had dinner.  He said “No” and I said I would see if I could throw together a tuna salad…  I opened my fridge and it was pretty empty.  Some salad stuff, milk, apples and a couple of bottles of wine…


I managed to put a salad together but I could see the birthday boy was not overly impressed.  I was not concerned at all.  He was far too good looking and newly divorced so I did not want to get involved with him.  I had been divorced for many years and Vic was used to it just being the two of us.


I dodged all Danie’s advances for more than a year.  On the 8th of December 1989 I accompanied Danie to a black tie event.  At the function I could not help but notice the reverence his colleagues had for him.  He danced like a dream and remembered that it was my birthday at 12 O Clock….  It was truly a fairy tale night and I fell hopelessly in love.


Vic immediately sensed that there was danger!  She referred to him as “that man”…. She cried a lot and wanted to come home from boarding school.  Vic made a 360 degree turn around.   She went from wanting to go to boarding school to wanting to move home… from independent to needy… from being a difficult teenager to being an impossible teenager.


I met Danie’s children.  I was terrified!  I did not know or like children.  My life was structured, neat, organized and perfect.  I was totally committed to my career.  I had property, a business, lots of friends, a healthy bank balance and my own toolbox.  I did not need any complications in my life!!


I prayed so hard so direction… I explained to God that I was so scared of making a mistake that would affect so many people’s lives.  I asked for a clear scripture!


I opened my Bible and the scripture that jumped up at me was Ecclesiastes 4:9-12 “9 Two are better than one, because they have a good reward for their toil. 10 For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up! 11 Again, if two lie together, they keep warm, but how can one keep warm alone? 12 And though a man might prevail against one who is alone, two will withstand him—a threefold cord is not quickly broken.”


I immediately went back on my knees and prayed again.  “God, thank you for the scripture you gave me but what about all the children?”


I opened my Bible and it fell open on page 793 of the Old Testament.  Isaiah 54:1-17 “Sing, O barren one, who did not bear; break forth into singing and cry aloud, you who have not been in labor! For the children of the desolate one will be more than the children of her who is married,” says the Lord. “Enlarge the place of your tent, and let the curtains of your habitations be stretched out; do not hold back; lengthen your cords and strengthen your stakes. For you will spread abroad to the right and to the left, and your offspring will possess the nations and will people the desolate cities. “Fear not, for you will not be ashamed; be not confounded, for you will not be disgraced; for you will forget the shame of your youth, and the reproach of your widowhood you will remember no more. “


Barren? That was me…  The day after Danie’s 52nd birthday we were married.


So tomorrow this wonderful man and I will celebrate our 22ND Anniversary.  We have managed to create a “home” for our five children.  The children, I feared, I now love as my own.  Two of the four call me “Mom”.  Their children are MY grandchildren.  They allow us to be part of the children’s lives and do not discriminate between the grandmothers.  From the day we were married Vic has called Danie “Daddy”.  Danie’s four children are her siblings.  They are our infrastructure.


Danie has been so absolutely amazing with Vic and her illness.  When my dad moved in with us Danie just accepted it as part of our journey.  He was incredibly patient with my Dad who suffered from Alzheimers.  He is my back-up system.  His selfless, caring nature has allowed me to pursue my career.  I am able to travel internationally for my work as he is home…..he is my back-up.  He fetches and carries the boys.  He checks on Vic and loves her and the boys unconditionally.  He shops and manages the home in my absence.  He thinks I am beautiful and smart.


This beautiful man is more than I deserve.  I love him with every fiber of my body.  I am grateful to him for the gift of his children and grandchildren every day of my life.  I am grateful that he taught me the biggest commandment of all – love!


So tonight I salute a wonderful man, husband, father and grandfather.  He is my best friend.  He is an amazing father to Vic.  Thank you God!


He is truly “The wind beneath my wings”  http://www.youtube.com/watch?v=c9ZMDPf9hZw&feature=colike

	


	
	






	
	

		
Mommy, I thought I had more time….
	


	

		

Jared and his proud mommy


“You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die.”  –Dame Cicely Saunders


The Hospice doctor that called to see and evaluate Vic was a tall, slim young woman.  She has a gentle voice and long fingers with short nails.  She drives a Jeep and keeps large dogs.  She looks like a naturalist.


“I am Dr Sue Walters from Hospice.  The Pain Clinic asked us to see you.  Is it okay for me to examine you?” she asked Vic in her gentle voice.


Vic’s abdomen was severely distended and very tender.  She was running a fever and her resting heart rate of 103 indicating severe pain despite the fact that she had already taken her pain medication.  Vicky’s vitals were poor.


Sue administered a strong morphine injection.


“Vicky, you appear to have an abscess on the right-hand side of your abdomen.  The skin is hot to the touch and distended.  I think you have a partial obstruction.” Dr Sue said to Vic.


“I am here to see if Hospice can help you.  Do you realize that you are very ill my love?”  Dr Sue asked Vic.


“Hospice will not hasten your death my love.  It would be our aim and purpose to provide you with pain relief and quality of life.  We will treat you and not the disease.  It is exclusively your decision whether you want us to help you and how you want us to help you.”  She explained to Vic


Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to help patients live their last days as alert and pain-free as possible. Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions. http://www.cancer.org/Treatment/FindingandPayingforTreatment/ChoosingYourTreatmentTeam/HospiceCare/hospice-care-what-is-hospice-care


Vic was in so much pain that she was barely able to speak.  Tears welled up in her eyes and she softly said “Please doctor”.


“My love, you need to tell us how you want us to treat your symptoms such as obstructions?” Dr Sue asked


“I want no life extending treatment.  I am so tired doctor” Vic whispered.  “I can’t do this anymore…..”


“That’s fine my love.  We will try and relieve your pain and give you some quality of life.”


“Mommy I thought I had more time…” Vic said with tears silently running down her cheeks…… Then the injection kicked in and she drifted off to sleep.


Dr Sue said that the responsible sister would collect the morphine from the Hospice pharmacy and she would set up a  subcutaneous morphine syringe system by that afternoon.  Hospice would arrange for counseling for the boys.


She hugged me and left.  All of a sudden I felt so alone again!


Subcutaneous, or under-the-skin, injections use a needle to deliver medications into tissue just under the skin. An infusion of morphine, anti-nausea medication and Dormicum is now administered 24/7.


The first couple of days Vic slept a lot.  She was tired but there was immediate pain relief.


The nausea subsided and the partial obstruction cleared two days later!


The first infusion site was in her leg.  Within a day and a half the area “tissued”.   A common side effect associated with subcutaneous injections is injection-site reaction such as swelling, redness, and pain.  We phoned Hospice and the Nurse promptly came and the needle was reinserted into the arm.  Within two hours the needle came out again and the morphine was running onto the skin.  It was too late for the Hospice Nurse to return and to re-insert the needle so Vic went to the doctor and he relocated the needle into the abdominal area.


Last night the tissue in the abdominal area had tissued again.  It was also bloody and the morphine was running onto the skin and not into the tissue.  Vic was nauseous with pain.  I had no option but to remove the needle and re-inserting it into a different site.


“I think we should put it into the other side of your tummy” I said


“Mommy, I will insert the needle if you help me…” Vic replied


“No sweetie” I said.  “I will do it”


My heart was in my throat.  I removed the needle and cleaned the injection site.  I disinfected the new site that I had identified.  I took the needle in my hand and lifted the skin.  I pushed the needle against the skin.  I assumed that the needle would just slide in… It did not just slide in!  There was resistance!! I let go of the skin and changed my position.  I could hear and feel my heart pounding in my ears! I again took my child’s skin between my fingers and pulled it upward.


“Maybe I should relax my hold onto the skin…maybe the skin must more relaxed?…..” I thought.


I exerted pressure on the needle and it slid in…  Sweet success!!!!


“Oh Mommy you are such a star!  Thank you.  That did not hurt at all!” Vic gushed.


I do not believe her.  I had felt her little body tense up as the needle went in.  It hurt!


My entire body shook.  The bile rose in my throat and I slowly let out my breath.


We have all come such a far way.  Until last night I could not watch anyone stick a needle into my child.  Now I have stuck a needle into my child’s flesh.  I fear that Vicky’s tissue is too poor for us to continue on the subcutaneous route…… If we do I will have to do this many more times in my life.


The good news is that I was actually able to work the whole week.  It was the annual African Air and Defense Show and we exhibited.  Normally I would be absolutely frantic about Vic.  But I was okay with the fact that she is relatively pain free and the nursing sister visits every two days.


Vic is far more active.  She is truly so much better.  The partial obstruction appears to have cleared!  She spends time chatting to the boys.  On Saturday she took Jared shopping for a new shirt and shoes!


On Sunday morning Jared lit candles “For those we have loved and lost but will forever be in our memories♥..Gramps, Oupa Tienie, Ouma, Nan and Oupes♡”  Vic handed him his baptism candle that she received 15.5 years ago at his christening.  He lit his candle as he took responsibility for his own walk with God.  Vic and I laid hands on him and prayed for him.  It was so touching.


Joyous day!


Vic attended Jared’s confirmation service.  I have never seen a more radiant and proud mother in my entire life.


Vic has reached another milestone in her life.

	


	
	






	
	

		
Whispered secrets
	


	

		




Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011




 


	


	
	






	
	

		
Whispered secrets
	


	

		

Jared and Jon-Daniel taking Vic for a walk during one of her hospital visits 28.8.2011


It is Monday the 3rd of September 2012.  Vic had a horrible night and looked absolutely terrible this morning.  Jared’s kidney hurt like hell and I got an appointment for him to see the urologist at 13:00.


Vic wanted to go with but Jared held her little body in his arms and said: “Mommy please stay in bed.  Oumie will take me to the doctor.  I promise I will phone you if I am scared or need you.”  


Vic sobbed uncontrollably.


“Please Mommy, you are just going to be more sore and sick if you go with now…”


Jared and Jon-Daniel are strong and terribly protective of their Mommy.  It stresses and scares them when Vic tries to do too much.  The boys are continually stressing that Vic, in her endeavors to mother, overdoes things and then pays the price.  They feel guilty…they assume responsibility for Vicky’s actions.


“Mom picked me up from school and is now very tired….”


” Mom came to watch me play cricket and is now sick in bed for a week again…”


” Mom broke another vertebra taking me to school….  “


Whilst friends and family “ooh and aahh” about how mature and responsible the boys are, their lives are lonely lives.  They are missing out on their own childhood experiences.  Most of the children in Jared’s class are having “Sweet Sixteen” parties.  Jared is invited but chooses to stay home.  He says it is because the kids smoke and drink…  But I know he does not want to leave his mother.


Until earlier this year, when Vic spoke to the boys, there were whispered secrets, secret tears when we thought they were not looking and false bravado when they were looking.  You see, although we know death is inevitable, the timing is uncertain.  It is like running a marathon without knowing any details about the timing or the course. The boys also experience guilt because they too pray that Vic’s suffering will end.


Yet Vic struggles with dying.  It is impossibly painful to leave her sons.  To let go….. To allow them to be grandmothered….


So, today I again, experienced the unbelievable selflessness of a parentified child when Jared said “Please Mommy, you are just going to be more sore and sick if you go with now…”  https://tersiaburger.com/2012/06/30/a-mothers-love-for-her-sons/


Tomorrow morning Jared will return to the operating theater for the 3rd time since the 27th of June 2012.  The sonars show at least two more kidney stones.  Obviously last week’s lithotripsy, or shock wave therapy (EWSL), (to break the stone up into smaller fragments to allow those small pieces to pass more easily into the bladder), was not the solution.  The urologist will perform ureteroscopy.  Instruments are threaded into the ureter that will allow the urologist to place a stent (a thin hollow tube) through the urethra, past the bladder, and into the ureter to bypass the obstructing stone. This stent will be left for two weeks when  Jared will once again go back to theater and the urologist will use instruments to “grab the stone” and remove it.


Tomorrow morning Jon-Daniel will go to school – fearful for both his mother and brother.  He will bravely write a maths test and excel at it.  Success and high marks are his coping mechanism.


How unfair is life.

	


	
	






	
	

		
Happy birthday my angel child!
	


	

		

Vic and all the men in her life admiring her PC tablet


Friday morning the boys woke Vic with breakfast and coffee.  They sang “Happy Birthday” and gave her beautiful gold earrings that they had chosen and paid for themselves.


Vic went to breakfast with Leeann at 08:00 and set off for the Beauty Parlour with Esther at 10:00.  She was home with beautiful nails at 11:30. Poor little poppet!  She was so exhausted.  She got into bed and slept for the rest of the day.


We woke her at 18:00 to get ready for dinner.  She was in too much pain.  She sobbed.


The boys spoke to her and told her “We will have takeaways and have dinner in your room Mom…like we did on Mother’s Day.  It will be fun!” Vic had spare ribs and the boys and I had wonderful hamburgers!  Danie is so health conscious he had the fish!  It was a lovely evening.  We were sprawled all over her bed, laughing and joking. I sat there and my heart filled with joy.  My beautiful little girl, her sons and my wonderful husband once again celebrating her birthday.


When Danie and I gave her a Tablet Vic was over the moon.  She loves gadgets and has wanted a PC Tablet for a long time.  Vic said “Mommy I can’t believe I got a Tablet that I don’t have to drink!”  We laughed until our tummy’s hurt.


Vic and I


We had arranged a barbeque for Saturday afternoon to celebrate not only Vic’s birthday but also Tom (son-in-law married to Lani) who has a birthday on Tuesday – 4.9.2012, Henk (grandson – birthday 2.9.2012)and Francois (Tom and Lani’s friend – birthday Monday 3.9.2012).  We hoped that Vic would have recovered enough to be able to enjoy the afternoon.  She rested until 14:00 and got dressed just in time to meet the first guests. We planned to sit under the trees but the weather turned.  A cold wind blew and we moved the party to the house.


Lani’s magical tables!


Children were running around and laughing.  Lani had prepared party packs for the kids and they had a ball!  The table settings were beautiful.  Lani is a magician!  Clusters of people were standing around chatting and laughing.  For a short while our household would appear to the world as a perfectly happy and normal household.


Vic looked so beautiful.  To the untrained eye she looked just like a normal, healthy young woman.  That is until she moved…she shuffles like an old lady!  She insisted on having photos taken with everyone as they arrived!


By 19:00 Vic was exhausted!  She conceded defeat and changed into her pyjamas on and slippers.  She came back to the table and tried so hard to hang-in.  Poor little poppet!  She cried from pain


Vic had a very bad night.  “What else can I take for pain Mommy?” became a refrain!


Last night Jared developed kidney pains again.  He said it was the same as last weekend’s kidney stone pains but worse.  This morning we decided to take him to the casualty department (ER).  Vic very bravely got dressed.  It was however very clear that she would not be able to go with.  She was just in too much pain.  She was heartbroken and sobs racked her little body.  “I am letting my son down….”


Jared had lots of pain meds and tomorrow morning we will see his urologist.


Our household is back to normal.  The laughter has subsided…..


It was a happy birthday………


Henk Birthday Boy 2.9.2012


Francois 3.9.2012 with Lani and Tom  4.9.2012 in the background








Fun was had by all!