Posted in A Mother's Grief, Angels, Family, Grief, Osteogenesis Imperfecta

A mother’s love….. Day 5 of 48


A mother’s love is like God’s love;                                                                                                    He loves us not because we are loveable,                                                                                      but because it is in His nature to love,                                                                                          and because we are his children.  
Earl Riney
16
72
 
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. 

 

Posted in A Mother's Grief, Angels, Bereavement, Death, Death of a child, Grief, Terminal Illness, Vicky Bruce

Extra tablets for your birthday…


A year ago I posted this…

Tomorrow, on the 31st of August, we will once again celebrate Vic’s life!  Every year, for the past 10 years, we expected it to be Vic’s last birthday.  Today I know that Vic will live forever.  She will continue to fight for another day, week, month, year…. Tomorrow we celebrate life!!

Tonight I sat doing Vic’s medication for the next 24 hours, and I popped an extra Jurnista into tomorrow morning’s tablets.    Janis Ian sings “and in the winter extra blankets for the cold…” and I sing ” and on your birthday extra tablets for the pain…..  My gift to Vic an extra tablet so she can a better day.

So, on the eve of my child’s birthday I am sitting thinking of what my prayer for Vic would be if I still knew how to pray.

I would pray for adequate pain relief.  I would pray for some quality of life time for Vic with her boys.  I would pray for Vic to have financial independence.   I would pray for Vic to have peace of mind.  I would pray that Vic would have enough faith in her dad and I to know it is okay to let go…the boys will be safe with us.

I do thank God that Vic is still alive.  I thank God for Dr Jabber Hussain and Jurnista.  I thank God for Vic’s incredible boys.  I thank God for the brave decision that Vic made not to have further surgery.  Above all, I thank God that Vic is home.

Tomorrow Vic will have a busy day.  She has a 08:00 breakfast appointment with Lee, a 10:00 manicure booked by Estherafternoon tea (at home) with Robbie Cramp and then dinner at a restaurant of her choice with the boys and us.   I know it will take a superhuman effort but I have “rests” scheduled for the birthday girl in between events.

What is a relatively quiet day for us is a marathon for anyone as ill as Vic.  I know that she will try so hard to survive the  birthday and the party day.  Somehow I don’t think she will manage it all.  I just hope that she has a good day so she can spend some constructive time with her boys.  They will need to remember this as a good birthday in years to come…..

On Saturday we will celebrate all the August/September birthdays.  Vic on the 31st of August, Henk on the 2nd of September and Tom on the 4th of September….  I hope Vic will be able to handle two busy days in a row.  Maybe the birthday high will carry her through it!

We have a family tradition of doing “birthday eulogies”.  Everyone present gets to say something nice about the birthday person.  Over the years I have told Vic how brave she is, what a fighter she is, how beautiful she is.  This year I will I will merely thank her for being here!

Everything else has been said.

082813_1847_15.jpg

Posted in A Mother's Grief, Angels, Bereavement, Death, Death of a child, Grief

We whisper your name…


Some days I sense Vic’s closeness. I sometimes smell her. But I cannot touch her. I cannot hear her voice.

The boys and I light candles for you my precious baby…

We whisper your name

The boys write your name in the sand…

You send us feathers from Heaven….

How we miss your brave smile…

How I miss reaching out and being able to touch you

Holding you my precious child…

Yesterday, today, forever……

I love you Angel Child!

Posted in A Mother's Grief, Bereavement, Death of a child, Grief

“Time takes us farther away…”


I have battled to blog. I feel that my words are rehashed from one post to the next. My emotions are the same.

My DiL and the three girls have spent 3 weeks in South Africa. It has been amazing hearing the patter of little feet down the passages, shrieks of laughter and anger… I will always cherish the little arms around my neck, the warm little bodies in my bed. I cherish the time I got to spend with my DiL; the chats into the early hours of the morning and the countless cups of tea. It reminded me of when Vic was still alive. I dread leaving England on Monday to return to my solitude and grief.

I feel guilty about posting my same tearful stories of grief and I feel guilty that I have become embarrassed by exposing my soul to the world – friend and foe alike.

The past four weeks life has been easier. I have laughed and smiled. I have had fun.

In 8 days’ time it is Vic’s birthday. I am filled with trepidation as to how I will cope. The second I think of Vic, tears well up in my eyes and there is this stabbing pain in my heart. I have decided that I will not move Vic’s ashes into the garden. Vic will remain on the sideboard where I can see her and run my hand over her little casket. Vic will not be exiled into the garden. She is part of our lives and she will remain exactly where she is.

I am wondering whether I should bake Vic favourite chocolate cake… The boys want to send up Chinese Lanterns we actually wrote messages on, on New Year’s Eve 2010. Vic was desperately ill in hospital and moved into ICU on the 1st of January 2010. She was devastated. The staff allowed us to spend the evening with her.

Vic being moved to ICU on New Years Day 1

At 12 O Clock we went outside to send up the Chinese lanterns. It rained and we undertook to do it when Vic was home again. Somehow we never did. When we returned to the ward, the staff had assembled in the visitors lounge. Someone had conducted a Mid-Night service. The staff sang beautifully and prayed for the patients. Many of them laid hands on Vic. Vic cried. Jon-Daniel was inconsolable. We all cried.

One of my blogger friend’s sent me this email “Oh, Tersia. You are held tight in the grip of horrific grief. Simply knowing that someday you will wrench free from such a suffocating grasp brings no relief at this moment. You already know you cannot fight it. Flow with the “ocean of tears.” A great deal of the horror is behind you, but you are reliving it. I distinctly remember that the WORST time in my grief came at six months and followed me until the end of the first year. Like an amputation without anaesthesia – you are deeply suffering and so many people feel your pain. Keep writing, crying and feeling. The ocean of tears will take you to a new shore. Time takes us farther away from our loved one. That is the agony and the anaesthesia. Such conflict that creates! Feel my hug because I’m with you.” http://judyunger.wordpress.com/

Another one of my blogger friends, Julie, is taking a sabbatical from blogging. She wrote “Just until my heart catches up with my voice. So much is happening, and so much is not happening – argh!”

I wonder whether my heart will ever catch up with my voice…

Posted in A Mother's Grief, Angels, Death, Death of a child, Grief, Terminal Illness, Vicky Bruce

From the diary of my precious child…


I found these words in Vic’s diary. It was an entry towards the end of her life. I believe it is a message from my precious angel child – not only to me but to her friends and family.

I found a web source when I did the plagiarism check. The poem was written by Karen Vervaet. Vic changed some words by never finished writing what she started.

These are the words my beautiful child wanted to share with her friends and family…

Goodbye
I turn my head and look towards death now.
Feeling my way through the tunnel with the space of
emptiness and quiet.
The shimmering silence that awaits me.
This is my direction now; inward to the green pastures…
The cares of the world concern me no longer.
I have completed this life. My work is done, my 
children grown.

My loved ones are well on their hero’s journey. (original text – My husband is well on his…)
I have loved much and well…
Those I leave behind, I love.
I hope I will remain in their hearts as they will
in mine…
Thank you for taking such good care of me…
And all of you who have been my friends, thank you
for teaching me about love.

Karen Vervaet

Posted in A Mother's Grief, Angels, Death, Death of a child, Grief, Vicky Bruce

My funeral


http://www.toms-travels.net/wp-content/uploads/2012/12/3candles.jpg
http://www.toms-travels.net/wp-content/uploads/2012/12/3candles.jpg

I am writing this through my tears. A dear cyber friend of mine is dying from congenital heart failure. She is a wise and terribly brave person. She posted this today…

“so here it is and then i am off to sleep.  when my sister was here we started talking about cremation.  of course she is the only person in my family that i would have this discussion with.  may i add we laughed although not all would find this humorous.  when cremated how do they separate the human remains from the ashes of the container used?  if no container is used why do they charge for it?  i have looked online for the answer and didn’t find it.”

This post jerked me back to Vic’s death bed. The memory of Vic sitting in her bed with an open file on her lap was burnt into my mind…. The folder – “My Funeral”

“Mommy, these are the hymns I want for my funeral…”

“Amazing Grace” and “How great thou art” were Vic’s hymns of choice…

“Mommy, do you think I can have candles? Lots of candles?” Vic asked.

In May 2012 Vic asked whether I would deliver her eulogy… She asked me to thank Jared for taking care of her and Jon-Daniel for making her laugh.

“Remember to make a list of everyone that we need to thank Mommy. I would hate for us to leave out anyone… “

On the 2nd of January, 16 days before she died, Vic double checked with me whether I remembered which hymns had to be sung at her memorial service.  She cried when she (again) named her pallbearers; she requested that her minister be called to administer communion.

“Please don’t let me lie in a refrigerator for a long time Mommy…Let them cremate me as quickly as possible”

I still feel the despair I felt then knowing that death was on the forefront of my child’s mind. I felt her fear of death; her terror of the unknown. I felt her desperate sadness and her reluctance to say goodbye… On the one hand her pain filled, little body was so diseased and weak. On the other hand,her will to live was so strong!

I was helpless. I was praying that Vic would die – that her suffering would end. I was bargaining with God to spare her. I tried negotiating with Him – my life for hers.

I still feel the madness that I felt then.

My dear friend is going through the same fears and emotions that my precious child did. She is making the same decisions. I wish I could reach out and hug her. I wish I could grab her from the claws of death.

I am thinking of you tonight my dear friend. In my thoughts you are well and safe. I wish I could spare you this journey. Lots of love and hugs.

https://tersiaburger.com/2013/02/13/the-process-of-preparing-for-death/

https://tersiaburger.com/2013/04/28/seasons-and-reasons/

https://tersiaburger.com/2013/04/25/it-is-okay-to-let-go-my-angel-child/

https://tersiaburger.com/2013/01/02/sisters-by-heart/

https://tersiaburger.com/2012/12/20/i-dont-want-to-die/

http://thedrsays.org/2013/07/16/quick-question/

Posted in A Mother's Grief, Death of a child, Grief, Religion in my world

I think God hates me?


http://risenetworks.org/2013/04/19/lovin 1

Over the years I have been deeply hurt by people of faith and religious institutions’ i.e. churches. I have spent many years of my life researching religion, seeking answers to my questions; to life’s twists and turns.

I believe in God. I believe in life hereafter. I believe that what we are living is hell and that heaven awaits us. I believe we are on earth to learn lessons, perfect our souls. I believe that we will return to earth until we have perfected our souls.

The “mind switch” was Passion of the Christ. I cried for three days. It was the most barbaric thing I had ever seen. I could not and cannot equate that to love. The other “mind switch” was the lovelessness of most “deeply” religious people. So I look at religion and this is the conclusion I have come to…

“Love” is The Big Commandment…. Matthew 22:36-40 NIV Love the Lord thy God with all your heart, and with all your soul and with all your mind. This is the first and greatest commandment. And the second is like it. Love your neighbour like yourself. All the Law and Prophets hand on these two Commandments@ Love God Thy Father and the second commandment that is equal to it “Love Thy neighbour”…

Love Thy Neighbour is quite a mouthful. Who is my neighbour – the person who lives next door to me in his multi million rand house or his domestic worker living in a room the size of a stamp on his premises? Maybe “my neighbour” could extend to the socio economic group that I equate to in my suburb or city? Hells bells, if I am generous the rich in my country may qualify…. But the people with different pigmentation and less money? No, no no!

Now let me spell it out. The way I see it

If God is a God of Love would He truly condemn people to eternal hell for not believing a particular version of religion? I know so many wonderful Muslim people who have “white souls”, who are kind, compassionate and generous. They would never deliberately harm a fellow human being. I know many beautiful Christians who are kind and compassionate and generous. I know that in a country like Saudi no money will exchange hands whilst it is Salah (prayer time). Restaurants and shops CLOSE for prayer 5 times a day and if you are not praying you will stand around in the passages of the shopping centre. You will not even be allowed to remain in the restaurant.

In my country and everywhere else in the world people of other religious groups will drink too much and talk about Muslims in a derogatory manner. They will call them heathens… They will lie and steal but take the religious high ground because they are “Christian”. And by the way, please do not inconvenience them and their social life by getting ill….If you are so inconsiderate – please die quickly so their lives can move along at it’s comfortable, fun filled pace.

Worldwide racism is alive and well. Where there is no racism it is tribalism, elitism that keeps hate flowing through the world.

For many years I did so-called “charity” and evangelism work in the poor rural areas in South Africa. Today I admit I am ashamed that I was so sanctimonious to think that I was needed to evangelize the poor. What do you say to a child who is freezing and hungry when they accept the Lord? “God is going to make your life better!”…That would imply that all of a sudden that child would have at least 3 meals a day, a bed and blanket, medical care and a good education…

Let me tell you, so-called evangelists hit and run. They convert and leave. There is no sustainability in what they offer. Most of their efforts are self-serving. Tomorrow that child is going to be cold and hungry and think “that woman of God said God would bless me…Why has He not done so? He must hate me…”

So, I ask the question…who is the “woman of God”? The self-appointed evangelist or the impoverished next door neighbour who shares her last crust of bread with the hungry child?

I don’t believe that there is a single religion that is “right.” There is good and bad in all religions. There is good and bad in every person!

The Catholic’s decided which books were to be in the Bible. The Qur’an is a modified version of the Old Testament. The Torah is another modified version of the Old Testament.

I know there will be a reaction to this post. I know many people will “unfollow” me after this post. That is fine. It is your right to decide what to read. It is my right to write what I believe and have experienced.

Vic often asked me “Mommy, why do you think God hates me?”

The Church deserted Vic. Christians deserted Vic. Family deserted Vic. Friends deserted Vic. Even the most religious of religious did not have enough compassion for my child to lift a phone and ask “How is your child doing?” or “I am sorry to hear about her passing”. Family, yes you read correctly, did not even sympathise. What a cold God they must serve? Yet these righteous self-serving stone-Christians point fingers at others for not being “obedient” to God’s Word. Surely not the Word that says “Love thy neighbour”………

Posted in A Mother's Grief, Angels, Family, Family Life, Vicky Bruce

I wish you peace…


Peace is not the absence of trouble; it is the presence of God



You are strong… when you take your grief and teach it to smile.






You are brave… when you overcome your fear and help others to do the same.






You are happy… when you see a flower and are thankful for the blessing.





You love… when your own pain does not blind you to the pain of others.






You are wise… when you know the limits of your wisdom.






You are true… when you admit there are times you fool yourself.





You are alive… when tomorrows hope means more to you than yesterday’s mistake.






You are growing… when you know that you are but not what you are becoming.






You are free… when you are in control of yourself but do not wish to control others.







You are honourable… when you find your honour is to honour others.





You are generous… when you can give as sweetly as you take.






You are humble… when you do not know how humble you are.






You are beautiful… when you don’t need a mirror to tell you.






You are rich… when you never need more than you have.







You are you… when you are at peace with who you are not.





I wish you peace, today, tomorrow and forever


Posted in A Mother's Grief, Angels, Death, Death of a child, Family, Grief, Terminal Illness, Vicky Bruce

I am a Shidu… I am a Shidu…


When a parent dies, you lose your past; when a child dies, you lose your future.

 

http://www.sinous.com
http://www.sinous.com

There are more than 100 million single (only) children in China, Xinhua, the state-run news agency, reported in February. That translates into more than 200 million parents of single children.

Until 2012, there were “at least” one million families in China that had lost their only child, Xinhua wrote in a separate report carried by the Jinghua Times. About 76,000 families are added to the sad roster each year, it said.

There is a special term for the parents that has lost their only child….”shidu” family.

In the rest of the world the average woman gives birth to 2.75 children.

I gave birth to one.  My only birth child has died. I am a “shidu”

Today I am (again) desperately missing my child.  I feel as if I have lost my future.  I only have my past.  But I know that is not true.  I have Vic’s two amazing son’s to care for; 4 precious stepchildren; 9 step grandchildren that I love like my own…

Many years ago when Danie proposed I asked God for a clear sign.  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. “

My answer was a prophesy…  Not only is my life filled with these precious people but I now also have Izak, Reuben, Nonthanthle and Shekinah to love.  I am blessed.

Does this however fill the void that Vic’s death has left?

I feel ungrateful for being in this well of despair whilst I am not alone.  I am motherless not childless.  The fact remains that I desperately miss my child.  My life is empty.  I have lost my future.

I am a Shidu

https://tersiaburger.com/2012/10/05/danie-the-wind-beneath-my-wings/

 

 

Posted in A Mother's Grief, Death, Death of a child, Family, Grief, Hospice, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

Mommy’s dream is coming true…


Jon-Daniel’s BBM status today was “Mommy’s dream coming true” with this photo…

Jon-Daniel

Your dream is coming true my angel child. Your Stepping Stone Hospice is functioning, and we have received a building as a donation!  Next week construction will start and by the end of the month we will move in! 

Behind the building there is a duck pond and a quaint little chapel.  I look forward to planting some roses in the garden!  We anticipate wheeling our day-care patients into the garden so they can feed the ducks.

Of course we do not have furniture yet.  The boys are donating the furniture for the two Dignity Rooms (dying rooms).  It was their decision!  We want to real make the rooms pretty and lively… We will play gentle music and burn candles like we did for you… It will truly be rooms of love…

Yesterday I was at the site and I was looking at the terrain that they were clearing.  All of a sudden there was this perfect white feather…Another message from you Angel.  Thank you.  I needed a sign…

Stepping Stone Hospice is daunting.  This week an article appeared in the Tames Times.  It opened a floodgate of telephone calls…  An elderly man called.  His voice was raw with grief and despair.  His wife is dying from liver cancer and he is going through all those familiar caregiver anguish.  How will he know when it is time?  But she is still working and in total denial…He did not want help and will put my number on speed dial… I experienced what Arlene must have experienced when I phoned her the first time….  Quite a few new patients this week…so much pain and fear…

We have had wonderful offers of help.  A woman phoned today and said that she did not know how to care for a sick person, but she was prepared to go clean a sick person’s home… We have had offers of help from professional councillors, people from all wards of life…Now we can only hope and pray that people will volunteer furniture and make some financial contributions! 

I am amazed at the goodness and generosity of people.  The company that donated the building belongs to a young man, Jaco Schultz.  You would have liked him my angel.  He is really a nice young man with a “white heart”.

 I can hear you asking “Where did you find him Mommy?” 

I did not find him.  He found us!  Long story…here is the short version!

We sell second-hand clothing to raise funds…  El-Marie, Jaco’s sister took 14 bags of clothing to Trix.  Trix (a wonderful woman with a superb sense of humour and a passion for Stepping Stone Hospice) told her what we do with the proceeds of the clothes (we buy medication for the indigent patients).  Two weeks later she dropped off more bags and asked whether we could meet her brother… 

The meeting itself was quite funny.  It was when I had that terrible flu.  The morning of the meeting I hardly had a voice, my head was throbbing and I was certain I would die.  Remember the woman you met, who lives around the corner from us and whose daughter-in-law was paralysed in an accident in December 2012?  She was at the meeting.  I was so scared I would spread my flu germs, and she would contract my flu, that I wore a facemask – I did not want DiL’s death on my conscience.  It must have looked so funny!  Me with this horrible surgical facemask… gasping for oxygen and only breathing in concentrated germs! 

Jaco asked to see the terrain, and we went on a walk-about.  He asked whether a tree could be moved….We had a promise of a building that would have a small day-care centre, two dignity rooms, a treatment room…! As easy as that!

plansWithin weeks the promise is becoming a reality.  Construction starts next week!  I am so excited!  So my Angel Girl, there was a purpose to your suffering after all. I wish it was different but it isn’t. We have been blessed beyond comprehension. 

I believe that God is personally overseeing this project. 

Love and miss you with all my heart Sweetie.

https://tersiaburger.com/2012/11/08/being-prepared-to-die-is-one-of-the-greatest-secrets-of-living-george-lincoln-rockwell/

https://tersiaburger.com/2012/11/16/we-both-laughed-and-the-moment-was-over/

https://tersiaburger.com/2012/12/02/where-to-now/

https://tersiaburger.com/2013/02/13/the-process-of-preparing-for-death/

https://tersiaburger.com/2012/10/15/remission-15-10-2012/

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/2013/05/27/hospice-patients-live-longer/

https://tersiaburger.com/2013/04/24/stepping-stone-hospice/

https://tersiaburger.com/2013/01/03/tomorrow-may-be-better-than-yesterday/

 

 

Posted in Death, Death of a child, Family, Grief, Terminal Illness, Vicky Bruce

TWENTY …


Vic as a 20 year old with Danie and I
Vic as a 20 year old with Danie and I

Properties of the number 20


Symbolism

  • Represent the God solar for the Mayas.
  • The number 20 is considered as ominous for saint Jerome because it indicates the universal fight, but it also represents the source of all energy of the world.
  • This number is represented in Hebrew by the letter caph, in form of opened hand, to seize and hold. The eleventh mystery of the Tarot, which corresponds to this letter, and consequently with this number, is “the Force” which expresses energy, the activity, the work, according to R. Allendy.
  • Number associated to the resurrection or to the reincarnation, according to Creusot.

Bible

  • Samson had judged Israel for twenty years. (Jg 16,31)
  • Under the commandment of Elisha, twenty barley loaves are enough to feed hundred persons. (2 K 4,42-44)
  • God asked Moses to make the census of all the community of Israelis being twenty years old and more. (Nb 1,3)
  • Jacob spent twenty years at Laban before to escape. (Gn 31,38)

General

  • One month in the religious calendar Maya contained twenty days.
  • Magic square of 20:

8 6 4 2

4 2 8 6

2 4 6 8

6 8 2 4

  • Number of characters of the alphabet of bards.
  • Anniversary of marriage: weddings of porcelain of China.

Occurrence

  • The number 20 is used 117 times in the Bible.
  • The number 24 is used 20 times in the Bible.
  • The number 20 is used only once in the Koran. (Koran VIII, 66)
  • The names of Cain and Rome are used 20 times in the Bible.

 

It is Friday again.  Twenty weeks ago my beautiful Vic died.  Twenty sounds too “little”.  It feels too “much”.  Twenty was always such a magical figure…Twenty had an allure of its own.  Twenty always felt like the “almost adult” number.  I remember when I was twenty years old I was so excited about turning 21…coming of age!

Now twenty represents the number of weeks that we have wept and longed for the presence of Vic.

A year ago I posted “Life aka Vicky” versus Death.  https://tersiaburger.com/2012/06/07/6-6-2012-3-2/

 I wrote “Mommy, I am sick” Every time Vic opens her eyes she utters these words. 

Will she win what we believe to be the final round?  Life aka Vicky vs. Death… Ten long, long years she has fought with every fibre in her little body.  I sense that she is tired.  Ready to concede defeat…  She says she isn’t scared.  I am!  I am scared of facing life without my baby. 

Now I have already faced 20 weeks of living without my baby.

 

Posted in A Mother's Grief, Chronic Pain, Death, Death of a child, Family, Grief, Terminal Illness, Vicky Bruce

Bittersweet


100_9077I often wondered exactly what went through Vic’s mind in the final months of her life when she felt death sneaking up on her.  I know she was scared and lonely; she was heartbroken knowing that her boys would grow up without her….I am not stupid.  I know that Vic did not share all her fears and thoughts with me.  She was trying to protect me.

Today I read a bittersweet post.  I wept when I read the words.  It was as if I heard Vic’s voice…felt her fear…

Bittersweet
June 4, 2013 by sugarmagzz        | 6 Comments
 
It happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified.  This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface…
 
The look on Owen’s face when he sees Disney World for the first time.
 
The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood.
 
Owen’s high school and college graduation ceremonies, his wedding.
Ashlei’s wedding, the birth of her children, becoming an Aunt.
 
Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still.
 
Grandchildren.
I will not see these momentous occasions, they will occur without my physical presence.
 
I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.

Tonight I am doubting myself again.  I wonder – did I comfort my child enough?  Why was this precious child of mine condemned to a life of horrible pain and suffering?  She never truly lived!  Why did she die and bad people continue to live and prosper?  Why was she deprived of a future???  She was such a good person!!!!!

I want to hold her and protect her.  I want to tell her how much I love her.  That she is the best thing that ever happened to me.  That my life is empty without her.  That I understood her fears.  

I WANT MY CHILD BACK!!!

 

Posted in Angels, Death, Death of a child, Hospice, Palliative Care, Religion in my world, Terminal Illness, Vicky Bruce

When the soul leaves the body


http://www.youtube.com/watch?v=auoJV4re3nU
http://www.youtube.com/watch?v=auoJV4re3nU

When a child is born we laugh, cry with joy and celebrate; when a loved one dies we cry with heartbreak and mourn.  We spend a lifetime celebrating life.  Grief too deserves time, attention, honour and embracing.

Grief is painful, yet it gives us a glimpse of Heaven – afterlife… Life after death…

I have seen a quite a few people die.  Mostly very close family… my mom, my mother-in-law, my dad and my precious child.  I have seen strangers die – patients in TB hospitals, AIDS patients in hospital; a young man burning to death after a car accident…

My Mom died when she developed septicaemia from surgery.  She was confused from the raging fever and the infection ravaging her little body.  Mom knew that it would be her last surgery.  She said that she would not survive the operation and was prepared for death.  Mom died with my dad and us kids standing around her bed – taking turns to pray for her.  Like Vic she fought for life until death won the battle.

The day my mom-in-law died I sat next to her bed.  It was just the two of us.  I asked her whether she was scared.  She smiled and shook her head.  I know that she looked forward to death…to the afterlife.  Hours later when this gracious lady just stopped breathing her children and I were standing around her bed.  We were singing her favourite hymn.  Her death was gentle and dignified.

My Dad was not aware of the fact that he was dying… He developed Alzheimer’s pneumonia and gently lapsed into a coma.  My dad just forgot how to breathe.  If he was aware of the fact that he was dying I think he would have been surprised.  He did not “know” he was dying.  I know he would have been grateful that he had been spared that final indignity of Alzheimer’s.  He died the way he lived – with dignity and gentleness…

My precious child died fighting.  She had so much left to do.  She had children to raise.  Vic, like my mom, did not know how to not fight to live another day…

I suppose we all have pre-conceived ideas of how people should handle death emotionally and spiritually.  For years I would ask Vic whether she had asked God for forgiveness and mercy before she went into theatre for more surgery…Later in life I thought how stupid of me.  Vic lived a life, obedient to the greatest commandment – To love God with mind, body and soul….and her neighbour… I knew that Vic had made peace with God.  In death Vic requested Last Communion…  Her spiritual rituals were taken care off.

Vic said her goodbyes.  It was heart-breaking for everyone who loved her.  She needed to hear that we would honour her memory, not forget what she represented in life.  She needed to hear that her sons would remember her as their Mother and not use her as an excuse.  She thanked people over and over for their friendship and love; their caring and loyalty…

Nothing was left unsaid.    I read somewhere “something said or not said, something you wish you had done differently, can stick inside you like a splinter.”

The scenes of death that I have witnessed and lived through were sacred.  I saw souls depart from the bodies of my loved ones… I saw that there is more than life-sustaining organs to a body.  There is a soul…There is no comparison to the appearance of the body after the soul has left the body.

I saw Vic’s father’s soul leave his body five days before he was declared brain-dead.  I was standing next to his hospital bed asking him for forgiveness.  I realised standing there that I was not the only one who suffered from our divorce.  I realised that I too had caused him pain.  I spoke to him about God and Heaven – I prayed for him.  One bloody tear ran down his check.  He continued to breathe on the ventilator, but I felt his soul leave his body.

The willingness to sit at death’s bedside – to embrace the loss experiences in our lives – opens a window into Heaven.  I do not fear death.  I know when my time comes I will embrace death knowing that I will be reunited with my child, my parents, loved ones, friends…the ones I leave behind will eventually follow and join us.   When something leaves it goes somewhere.  It is a displacement of energy.

Now I am between birth and death.  Heaven awaits.

Some of my related posts and other great reads:

https://tersiaburger.com/2012/10/29/one-bloody-tear/
https://tersiaburger.com/2012/08/03/happy-birthday-mommy-3-8-2012/
https://tersiaburger.com/2012/07/18/487/
http://humansarefree.com/2011/03/russian-scientist-consciousness.html
http://www.youtube.com/watch?v=auoJV4re3nU
http://jimmyakin.com/when-the-soul-leaves-the-body
http://www.arachimusa.org/Index.asp?ArticleID=61&CategoryID=359&Page=1

 

Posted in Angels, Chronic Pain, Death, Hospice, Palliative Care, Terminal Illness

Hospice patients live longer


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This post is all about pain and the myths and realities in hospice care

Palliative care usually starts too late.  We see it on a daily basis at Stepping Stone Hospice…  Most patients die within days of becoming patients.  Doctors continue to treat the patients until days before their death.  Referring a patient to Hospice means “conceding defeat”.

If patients were timorously referred to Hospice they would enjoy far greater quality of life than they do without.  It is a total fallacy that Hospice patients die sooner than non-hospice patients.

Research published in the Journal of Pain and Symptom Management found that terminally ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life.  Source: National Hospice and Palliative Care Organization

Survival Periods
For the entire sample of all disease cohorts, the mean number of survival days was eight days longer for hospice patients than for non hospice patients (337 vs. 329 days, P ¼ 0.00079).
This difference includes the effects of many factors including demographics and sample sizes of the two cohorts. When we normalized these other factors, the difference in days increases to 29 days, as we show later in the regression.  The survival period was significantly longer for the hospice cohort than for the non hospice cohort for the following diseases: CHF (402 vs. 321 days, P ¼ 0.0540), lung cancer (279 vs. 240 days, P < 0.0001), and pancreatic cancer (210 vs. 189 days, P ¼ 0.0102). The survival period was longer for the hospice cohort than non hospice cohort for colon cancer, and the difference approached but did not reach statistical significance (414 vs. 381 days, P ¼.0792).  http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf     

World Health Organization (WHO) definition of Palliative Care   Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

I reposted this amazing article/post By Terre Mirsch on the myths surrounding Hospice

Unmanaged pain is one of the greatest fears of those facing serious illness and is the reason that many choose hospice care. Uncontrolled pain causes suffering and significantly impacts quality of life and total wellbeing. Pain may also lead to other problems including difficulty sleeping, fatigue, poor appetite, and a compromised immune system. Persistent pain can also lead to social isolation, depression, anger, and anxiety. Spiritually, one may begin to question the meaning of the pain and wonder “Why is God doing this to me?”

The good news is that living with advanced illness does not mean that one has to live with uncontrolled pain. The majority of time, pain can be controlled by relatively simple means using easy to administer medications. But caregivers often worry that they do not have the knowledge and skills, or the confidence to administer the proper medications or treatments prescribed for their loved ones.

Misconceptions about pain and commonly used medications may create barriers to controlling pain effectively. Understanding what pain is, how it can be effectively managed, and alleviating common misconceptions is the first step towards reducing these barriers.

Myth:  “My loved one doesn’t look like he is in pain. That must mean that the pain is not that bad.”

Reality:  In 1984, pain research expert, Margo McCafferty defined pain as “whatever the experiencing person says it is, existing whenever he says it does.” We cannot tell if a person is having pain by looking at them. Only the person having pain knows how it feels so it is important that we ask the person if they are having pain and how it feels and we need to listen to their answer.

MythIt is best to wait until the pain is severe before taking pain medications.”

Reality:  It is best to stay ahead of the pain by taking medications around the clock when treating persistent pain. The longer pain goes untreated, the harder it is to ease. If the prescription says to take the medicine at certain times or at certain time intervals (for example, every four hours), make sure this is done.

Myth:  “People who take strong narcotic pain medication become addicted.”

Reality:  Opioid analgesics (also referred to as narcotics) are highly effective for many types of pain and can be given safely. Addiction is defined by a compulsive craving and use of a drug, which results in physical, psychological, and social harm to the user. Addiction is NOT a problem for people who take opioid medications for persistent uncontrolled pain.

Myth:  “When people with chronic pain are treated with strong pain medications, they will have to take more and more medication as time goes by to get the same pain relief.”

Reality:  Most patients take stable dosages of medication. Increases in medication dosage may result from worsening physical status. Sometimes tolerance develops and more medication is needed. It is important to understand that there is no highest dose for the amount of opioid medication that can be prescribed – there will always be something more that can be given to achieve comfort.

Myth “The side effects of strong pain medications make people too sleepy.”

Reality The goal of pain management is to achieve comfort while maintaining optimal alertness. Side effects of drowsiness will reduce or disappear within a few days. The most common side effect is constipation which can be controlled with a regular routine of medications aimed at keeping bowels regular.

Myth:  “Once you start taking morphine, the end is always near.”

Reality:  Morphine does not initiate the final phase of life or lead directly to death. Morphine provides relief of severe, chronic pain, promotes relaxation and comfort, and can also help to make breathing easier. Morphine does not lead to death. Morphine does not kill.

Good pain management improves quality of life and may even extend life. Palliative care and hospice professionals can provide you and your loved one with expert help that can help to manage the physical and emotional pain of life limiting illness. Caring for a loved one in pain can be difficult but with the right guidance and understanding, both you and your loved one can experience the comfort and support you deserve.

 http://www.careconfidently.com/2012/05/14/all-about-pain-myths-and-realities-in-hospice-care/

I know that Hospice provided my child with life.  I believe that Vic would have died months earlier if she had not been treated by Hospice.  It is a basic human right to die with dignity.  I am grateful that Vic had the privilege of dying with dignity.

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Posted in A Mother's Grief, Angels, Chronic Pain, Death, Death of a child, Family, Grief, Terminal Illness, Vicky Bruce

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!” https://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!