Vic’s angel


Wednesday I found another white feather floating in the sea…

Thursday we went to a famous wine farm, Spier.   Spier has bird and cheetah sanctuaries.  We wandered around and decided against the rather sophisticated meals served.  We decided to find a coffee shop or boutique restaurant – something quainter than the rather commercial option available.

We were fascinated by a beautiful falcon and even more magnificent looking owls.  Spier is a wonderful place to visit.

Tame falcon flying around at Spier
Tame falcon flying around at Spier

We left and decided to be adventurous and ignore the GPS.  We drove in an unknown direction on the lookout for something quaint.  We drove for two kilometres when we found an interesting sign…Aspidistra Nursery and Tea Garden.

We decided it sounded quaint enough.

It was the most amazing Tea Garden.  I expected fairies to jump out from the beautiful flowers.  Chimes merrily tinkled and chimed in the gentle breeze…

Fairy Garden
Fairy Garden
A bit of Heaven
A bit of Heaven

We had a delightful meal.  It was so peaceful we just sat and chatted.  WE spoke about how much Vic would have enjoyed the garden and how much we miss her.  We exchanged funny stories about Vic and decided to have desert.  I ordered the scones (Vic and my favourite).  The presentation of the scones was amazing!

My scones!
My scones!

“Mom would have loved this!” I said

A white feather floated down onto the table…

“You got your white feather Oumie!” Jared said.

I must be honest that when I started looking there were white feathers everywhere.  There were white pigeons sitting in the trees.

After our leisurely lunch we walked through the nursery part of Aspidistra and my wildest expectations were surpassed!  It was beautiful.  Plants and flowers were displayed in beautiful handcrafted containers; ribbons were swaying in the breeze.

Stellenbosch-20130404-01794 (2)

Then I saw it!  The perfect angel for Vic’s garden of remembrance!

It is a handmade, one of a kind, angel – just like my angel child.  Perfect – just like Vic!

Vic's angel...
Vic’s angel…

The angel is being couriered to our home next week.

I desperately miss my little girl.  I don’t want to be planning her Garden of Remembrance – I want to be planning our trip to Italy.  I want to be having a cup of coffee with my child not putting an almost empty bottle of coffee in a memory box.

I walked back into our home after a wonderful 12 day vacation in Cape Town and the grief overwhelmed me again.  The emptiness of the house truly got to me again today…

Will I ever feel happy again?  As I am typing I can hardly see the screen of my laptop.  I cannot stop the tears.

I cannot believe I ever thought it would be better for Vic to die… I cannot believe I have to face the rest of my life with this empty hole in my heart.  I cannot bear the sorrow.  I want to hold my little girl and hear her say “I love you Mommy”.

I want to see her smile when I say “I love you with all my heart Angel”

 

I read in the Bible that Heaven is a great place…”


Dr Sue putting up the drip. "If we knew you were going to take a photo we would of had our hair done..."
Dr Sue putting up the drip.  “If we knew you were going to take photos we would have our hair done…”

Sue came in this morning and managed to find a vein.  The vein held for the Perfalgan and she also managed to get a bag of saline into Vic.  This will hopefully rehydrate her.  It has been a rough 24 hours with so much vomiting.  The poor child…

We hooked the saline onto a hanger and it now hangs from her ceiling.  Leon, SiL, put a hook into her ceiling and we have suspended the drip from it.  I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan.  Tomorrow Sue will try to find another vein.

I suggested that Vic is mainlined or a stent is fitted.  Sue agreed that it would certainly make life a lot easier.  It would be easier to administer all Vic’s IV medication.  Vic said “Sorry Mommy, no hospitals…”

Vic's drip suspended from the ceiling
Vic’s drip suspended from the ceiling

Her heart rate, even whilst she is sleeping, is constantly above 110.

The IV medication immediately helped.  Vic’s breathing is better.  Vic has not vomited since 11 am this morning!  She even managed to have a bit to eat tonight.

When Sue left today she asked me what is holding Vic back.  Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…

Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed.  That is what the blood tests show.

What is holding Vic back?  Sue says death happens when one relaxes completely and deeply!  Vic’s adrenaline levels are preventing her from relaxing and dying.

All I want is for my little girl to find peace and her suffering to end.

Esther and Leon brought dinner tonight and just visited.  Vic even got out of bed for a while and had a laugh.  It was great being surrounded by the love of the family.

I wish I knew what to do to make Vic accept the inevitable.  I wish with every fibre of my body Vic will find peace.   That she will find the strength to let go…

Vic has been ill for such a long time.  Maybe she just thinks this is how life is.  Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain.  To play with her kids, go out for drinks or a movie with a friend.

On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….

Here On Earth …, There In Heaven…

Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours 

Obed Akuma
vicbaby

 Baby Girl it is time for Heaven…   You have to let go!

Sweet 16


On the 26th of December 1996 Jared Colin Sadie was born. He was a beautiful, healthy baby boy.  I cried with joy when I first saw him and that first “rush of love” hit me.

Baby Jared
Baby Jared

Vic fell pregnant 6 weeks after she got married.  When the kids asked us whether they could get married I had a LONG talk to them about NOT having babies.  They both said “We know…”  I explained the dangers of passing the Osteogenesis gene onto a next generation of innocent children.

I will never forget that dreadful Sunday night when they told us that Vic was pregnant.  My heart stopped.  I sobbed in the shower.  For the first time in her life I feared for Vic’s life.

Vicky refused flat out to have an abortion.  She said the baby a gift from God.  And so he was….

Jared is an amazing young man.  According to our government he is now old enough to vote, get his learners licence for a motor bike and work…  I look at him and I see a little boy who was going to be a stuntman;  a young child helping his Mommy cook;  get out of bed; walk down stairs…

Both Jared and Jon-Daniel are loving, compassionate monuments of Vic love and mothering.

Jared is a “computer nerd” with a wonderful personality.  He has a keen sense of humour and wise beyond his years.  He is fiercely protective of his mother.  A very dear Saudi friend of mine says Jared has a “white heart”.  (Albak Abyad” an Egyptian expression that indicates a person with a good heart. It’s literal translation to English is “You have a white heart” as opposed to being a bad person with a black heart).

Vic, once again, managed to get out of bed.  She was falling asleep in her chair, but managed to visit with most of the guests who came, ate something and left.  Laughter and joy reverberated through the house.  Vic was the proud mother. It was a happy home for the day…

The boys have a hard time coming to terms with the stage that Vic’s illness is at.  Jared’s first words when he comes back into the house after Siza leaves is “What did Hospice say?”.  He researches every symptom and sends me links on liver and renal failure.  He is an expert on Osteogenesis Imperfecta and was 9 years old when he spoke about his Mommy at a Public Speaking lesson at school.  The subject was “My Hero“.  We all expected him to speak of Nelson Mandela, but he chose to speak about his Mom.  (His brother followed suit two years later)

He said that his mom is his hero because despite the fact that she is so ill she still looks after them…

Jared and his Mommy
Jared and his Mommy

Jared had a wonderful 16th birthday.  He was absolutely thrilled with the Docking Station Vic had bought for him. As soon as he gets his license we will buy him a motorbike.

She ain't heavy - she is my mother
She ain’t heavy – she is my mother

Yesterday was a milestone in Vic’s life.  I fear it may be the last she will reach.  It is clear that Italy will not be possible.

I was so tired last night that I slept through Vic’s 23:31 and 03:00 “Vomiting” text messages…. Vic refuses to use the intercom!  She feels it is “disrespectful”.

Mother and Son
Mother and Son

As much as Vic resents the fact I may have to bring in a night nurse.

I remember Vic’s 16th as if it was yesterday.  Now she is a grown woman with two teenage sons – nearing the end of her tenure on earth

https://tersiaburger.com/2012/08/27/kidney-stones-on-the-move/

https://tersiaburger.com/2012/10/10/i-am-taking-a-break-from-your-blog/
https://tersiaburger.com/2012/07/07/chronic-illness-versus-terminal-illness/
https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/
https://tersiaburger.com/2012/06/09/9-6-2012/
https://tersiaburger.com/2012/10/16/and-the-winner-is/

I don’t want to die


Today has been a very, very bad day. Sr Siza was here when Vic had a violent vomiting spell. Yesterday Vic fractured a vertebra again. Her pain is out of control. Her breathing was shallow.

“I don’t want Jon-Daniel to see me now Mommy. It freaks him out when I can’t breathe” Vic pleaded

I lay behind her back, gently holding her whilst the tears wracked through her little body.

I don’t want to die Mommy. If only I can live for another year….. But I am so tired!” Vic softly cried

Do you think we will be able to do Italy Mommy?” she asked after a long silence

I hope so Baby. I think we must take the boys with us…” I replied

Oh Mommy, can we? We don’t have to go for a long time…” Vic said

We lay quietly for a while. Vic trying to breathe through her nausea and pain and I contemplating how I am going to pull off this Italy thing… Just imagine flying with a caseload of injections and a litre of morphine syrup…

Mommy, I don’t care what you do with my ashes… It was so hard putting my father’s ashes into that wall of remembrance! Are you going to be okay Mommy?” Vic cried

My heart stopped. This was so out of the blue… “You will always be with me. I will not put you into any wall” I said

“I will be your guardian angel.” Vic said

I know but remember I will need some privacy… “I said

Don’t worry Mommy! I will make sure my father doesn’t peep as well” Vic laughed through her tears

“I am scared Mommy…”

I am scared too Vic…”

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

“Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.”


“Worrying is carrying tomorrow’s load with today’s strength carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn’t empty tomorrow of its sorrow, it empties today of its strength.” ~ Corrie Ten Boom – I read this on Dr Bill Wooten’s blog http://drbillwooten.com/2012/11/17/todays-strength/

This is so true.  I have been so worried about Vic’s latest symptoms   The body is such a complex intertwined mechanism…. I am absolutely fascinated at how everything links in… I just have to discover the function of the appendix and it’s interwoven functions…

Vic is having a lousy day.  She is exhausted and very swollen.  Despite the injections she has been nauseous all day.  This evening she had another vomiting bout.  Tomorrow we will see Dr Sue again.  Just maybe there is a 3rd anti-nausea type injection available

Vic also complained of a terrible “acidic” feeling.

I Googled her symptoms and found something that matches her new symptoms and blood test results.

 Metabolic acidosis

From Wikipedia, the free encyclopedia

In medicine, metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3) in the kidney. Its causes are diverse, and its consequences can be serious, including coma and death. Together with respiratory acidosis, it is one of the two general causes of acidemia.

Other causes of metabolic acidosis include:

 Dr Sue said that Vic’s sodium levels are very low.  So I Googled “Low sodium Levels”

Abnormal sodium levels can be due to many different conditions.

A lower than normal sodium level is called hyponatremia. This may be due to:

  •  Addison’s disease – CHECK
  • Dehydration, vomiting, diarrhea  – CHECK
  • An increase in total body water seen in those with heart failure, certain kidney diseases, or cirrhosis of the liver – CHECK
  • Ketonuria – NEGATIVE
  • SIADH – POSSIBLE
  • Too much of the hormone vasopressin – VERY POSSIBLE
  • Use of medications such as diuretics (water pills), morphine, and SSRI antidepressantsCHECK

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001397/

This truly scares me.

Earlier tonight Vic and I chatted over a cup of tea and I said to her “Baby, I am a little worried about what is happening in your little body”

“Do you think I am in trouble Mommy?  Please be honest!” she pleaded.

*Sweetie, I think you are in more trouble than you realize” I answered

“Mommy I can feel it in my body.  I am just so tired.”

“Sweetie, if Dr Sue says you must go onto oxygen tomorrow you MUST”

“I don’t think so Mommy.” Vic replied

“You have to make it to Christmas Baby…”

“Do you think it is that close Mommy?” Vic asked

“It could be Vic….” I answered

“Do you think we will get to Italy?” Vic asked.

“We will go in January” I promised

“I will stay in bed and rest for a whole month if it enables me to go to Italy….” Vic promised

I have increased Vic’s Addison’s medication.  Prevention is better than cure and Italy awaits!

 

 

 

 

Vic is going to Italy


I sometimes think Vic will live forever.

Vic has been doing so well. Ever since the arm surgery she has coped well with the arm and the pain. The Jurnista is truly a miracle drug!

On Thursday Vic went out for coffee. She drove her own little car… it was less than 2 kilometers but she drove! She was exhausted when she got home but she did not “crash”! She fractured another vertebrae on the 12th of August (http://wp.me/p2rPrS-bA ) but she is coping with the pain! She handled an emotional crisis well on Saturday and today she dished up her own lunch! It is remarkable that she is doing so well. Two months ago I was at my wits end. Vic was totally reliant upon me for everything! Due to the Jurnmista she has started taking back her life… Slowly but surely!

We have started planning our December vacation. Danie and I will take the boys and Henk to Germany for a two week vacation. Vic want’s to spend a week on her own and I want her to go to a Spa for the 2nd week… In the European Spring Vic and I are going to Italy!!!!

Life is great!