Gramps was here…..

Monday 7.1.2013 was a crazy day. Vic was not in a good space.

Angela, Vic’s BFF came to visit. She is not only beautiful but also a calm and serene person. She radiates goodness. Angela being here gives me some time because I really trust her. I am able to get some essential chores done knowing that she is keeping an eye on Vic.

“Gramps was here” Vic said.

“How is he?” I asked

“I don’t know. He just came to tell me how much he loves us all…” Vic replied

My Dad forgot how to breathe on the 15^th of May 2011. He died in our home (in the very same room as Vic) surrounded by his beloved family. At times he was a stranger in the world. Some days he woke up in a room he could not remember from one nap to the next, lived with “strangers” and thought I was my Mom. Despite the advanced Alzheimer’s, he never forgot who Vic was and that she was ill. At times he forgot whether she was in hospital or out but he never forgot her or that she was ill.

“He has come to take you by your hand Sweetie…” I said

“I KNOW Mommy” she said impatiently.

Lee, Jared’s BFF mom popped around with a huge basket of exquisite flowers. Of course, Vic immediately got a bee in her bonnet and had to get out of bed. Always the social animal!

Esther arrived and Vic burst into tears when she saw her sister.

“I am so scared Sis” Vic cried in her sisters arms.

Esther has become Vic’s “coach”. She has the love for Vic to ask her what is holding her back; she tells Vic to run towards the light; to let go – the boys are safe are cared for. She holds Vic and dries her tears….

Danie took the boys for a haircut and new school uniforms.

In the afternoon Joanna, one the Jon-Daniel’s primary school friends’ Mom, popped in for a visit. It was touching when she spoke with Vic and apologized for coming to visit too late. Vic was sleeping and not aware of the visit. Joanna left with tears streaming down her cheeks. She left a little gift for Vic

“I wrote your name in the sand

But the waves blew it away

Then I wrote it in the sky

But the wind blew it away

So I wrote it in my heart

And that’s where it will stay.”

Siza arrived and told me that Sue would be in tomorrow morning to assess Vic. She said Vic’s colour is very poor and the circulation in her legs bad. Siza is of the opinion that the most humane thing to do for Vic would be to sedate her… Her body is building up so much adrenalin fighting death that it is preventing her from dying – despite the organ failure.

I am torn. My poor child’s anguish and pain sears through every nerve ending in my body. Not only mine but also the rest of the family’s…..I want the emotional side of her journey to end. But when I think that I will never hear her voice again, that I will never hear her cry and plead again… I want to die. Sedation can end her emotional anguish, but deprive us of last words.

When I walked into Vic’s room after Sr Siza left Vic said “I just saw Dries. He came to visit. I have thought of him the whole day….”

Dries is a dear family friend who died last year…

In the evening Judy (Dries’ widow) popped around for a visit. When I told her that Vic had seen Dries she burst into tears. She said, her sister Lida, a deeply religious woman, told her earlier in the day that she had dreamt of Dries and that Dries was going to come and “fetch” Vic…

I pointed out to Judy that Dries, who was a tour guide by profession, would take Vic on the scenic route…

We laughed.

Later in the evening Bella, one of the ministers in my Church, and James, the senior elder, came to visit. Bella, a dear friend over the years, spoke to the boys with so much compassion. He grew up in a home with a mother who was ill. He said that the congregation has never stopped praying for us as a family. He said the congregation carries us in their hearts. (One day I will still blog about Bella and his amazing ability to “pray Vic out of the claws of death”…)

We all stood holding hands around Vic’s bed whilst Bella said a beautiful prayer for Vic and the family. Someone stifled a little sob. There was absolute peace and a Godly presence in Vic’s room.

Rest in peace dear friend https://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/

For some dying is hard work https://tersiaburger.com/2012/07/18/487/

Valley of Death

January 2013. Today was a special day.

Boys lying with Vic before Chris' arrival — Boys lying with Vic before Chris’ arrival

Yesterday Vic asked me to contact her minister. Chris arrived at our home at 9.30am. We all sat in Vic’s room whilst Chris read Psalm 23 and prayed for Vic who was walking through the “valley of death.” She prayed for Vic to find peace and acceptance of her situation.

Chris then served Holy Communion. Vic, at first, did not want Jon-Daniel to partake in the Communion. Chris explained that a child having to be confirmed before they are allowed to partake in Communion is a man-made rule. I pointed out to Vic that it would be very special if Jon-Daniel could have his first Communion with her… Vic agreed.

It was so special.

I was filled with deep gratitude that we as a family have the opportunity of making memories every day. Today I am particularly grateful that Jon-Daniel will always carry the memory of his first Holy Communion with him. Even if his mom does not attend his confirmation he will remember that he took his first Holy Communion with her.

Vic and Jon-Daniel after taking Communion

For the first time in a long time I was grateful for Vic lingering death. I am grateful that Jared had the opportunity to tell her that she is a legend and that she will always live on in so many people’s minds and hearts. That Stepping Stone Hospice is her legacy….

Dying isn’t a science. There is no methodical process of coming to terms with death. The reality of what is busy happening to Vic is frightening and overwhelming. Earlier this week, when I gave one of the boys permission to go out, Vic said “See Mommy, this is why I cannot die. I don’t know if you will be strict enough with the boys…”

Vic is desperately clinging to life. Vic is afraid of losing control of her bodily functions and becoming a burden to us. Vic is afraid of the act of dying.

The rest of us are scared because we want her suffering to end. We know we will experience terrible guilt afterwards… Even as I am typing I KNOW I will second guess everything I did for Vic and every decision I ever made regarding her medical care. This is just the way it is…

Angela and Tracey visited today. The visits are so exhausting for Vic and yet she did not want them to leave. Every time they say “I must go…” Vic will pout and say “just stay a little longer…”

The weight is just falling off Vic. She managed to keep in a mug of diet “Cup of Soup”. Small mercies!

Lelani picked up the new morphine script from Dr Sue. She made imprints of the boys’ hands for Vic… She massaged Vic’s little feet. Jon-Daniel and I swam and Jared went with his girlfriend and her parents to a day resort. Danie picked up the script from the pharmacy and washed his own motorbike. (First time in 15 years….he always has it done!)

A normal day in the life of a family walking through the valley of death…I don’t want to forget any part of it.

Tomorrow may be better than yesterday

Photo credit: http://nwwes.deviantart.com/art/Stepping-Stones-of-Memory-216271485

Vic is rapidly deteriorating. Last night the nausea was absolutely relentless. With no food in her stomach Vic vomited blood. Old blood and new blood….. Her vitals are very unstable and I thought that she would not survive the night. I cried and slept in her bed with her.

Today Sr Siza tried to put up an IV drip. Vic has absolutely no veins left that are suitable for a drip. The sub-cutaneous driver is back up. At this stage of the game the risk of cellulitis is less than the need for pain and symptom control. We will reposition the subcutaneous driver as and when we need to.

Dr Sue has prescribed Cyklokapron. “Tranexamic acid (commonly marketed in tablet form as Lysteda and in IV form as Cyklokapron in the U.S. and Australia and asTransamin,Transcam in Asia, and Espercil in South America. Also marketed as TRAXYL (Nuvista Pharma) in Bangladesh,Cyclo-F and Femstrual in UK.) is a synthetic derivative of the amino acid lysine. It is used to treat or prevent excessive blood loss during surgery and in various other medical conditions. It is an antifibrinolytic that competitively inhibits the activation of plasminogen to plasmin, by binding to specific sites of both plasminogen and plasmin, a molecule responsible for the degradation of fibrin. Fibrin is a protein that forms the framework of blood clots. It has roughly eight times the antifibrinolytic activity of an older analogue, ε-aminocaproic acid.” http://en.wikipedia.org/wiki/Tranexamic_acid

She suggested that Vic be admitted to hospital. Vic refused.

On the 1^st of January 2013 Stepping Stone Hospice and Palliative Care started operating. It is pretty ironic that Vic may well be our first death.

But then again, tomorrow may be better than yesterday….Today was better than last night.

“Sisters by Heart”

Vic lost the Christmas gift she bought Esther. It is not the first time this has happened – Vic previously bought Esther a “Sister” fridge magnet and mislaid it somewhere…

Vic has spent a lot of time sorting out some last things – double checking her insurance policies, photo albums, writing cards for the boys to be read on the first Christmas, first anniversary, final school exam… She has been going tick, tick, tick…Oops Outstanding item: Esther’s gift!

I have searched the house and not found the sentimental nick-nacks Vic bought Esther for Christmas. I have driven around and looked for replacement gifts, but to no avail. So yesterday Vic said to Esther “Sis, I have to replace your Christmas gift… I cannot move on before I do that…Mommy is taking me to Eastgate tomorrow. I know I will find it there.”

Esther, who has a superb sense of humour, said “I won’t let you die before I get my present…What time are we leaving tomorrow?”

Early this morning Vic was dressed and ready for the excursion. At about 11am we set off shopping (after a hefty pain and nausea injection…) At the second shop we struck gold! (I actually found the gift she was looking for.) Vic had the salesperson wrap it with Christmas gift wrap. She is a stickler for “attention to detail”

Mission accomplished we went to a restaurant for lunch. As usual Vic agonised over the menu. She wanted a salmon dish with cream cheese – No salmon…. Arghhh! She settled for a sandwich and coffee.

The gift Vic bought was a Willow Tree figurine set of two girls holding hands. “Just like we lay and chatted last night Sis…”

Sisters by Heart

Celebrating a treasured friendship of sharing and understanding

“I’m very close to my sisters, and the friendship and support of other women has always enriched my life. I also realize that there are friends or other relatives that may not be blood sisters, but share this same type of closeness.”

Vic and Esther are step sisters. There is no blood bond, but they are bound by their deep love for one another. Esther has been an absolute pillar of strength to Vic and the rest of the family. Daily Esther sends Vic beautiful text messages. She brings Vic flowers from her garden. She lies next to Vic and listens to her babbling. Esther is the sister Vic never had.

Needless to say, Vic did not handle her lunch well and after a visit to the toilet we left. I could see her heart beating like crazy in her neck. People looked at us as far as we walked. I realized with a shock that it is because Vic obviously looks ill and shuffles like an old person. I look at her and I only see a beautiful young woman; my baby girl and the mother of my grandsons.

Vic is having a strange day… Her blood pressure is all over; her heart races and then slows down.

“Something is wrong mommy.”

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

Vic asked that I get her minister to come and administer Holy Communion to her this week.

The whole situation is so surreal. I find it impossible to believe that Vic may actually be dying. She is so beautiful and her mind is crystal clear! I think Vic is just caught up in the Hospice talk. Maybe I am in denial. She has not vomited blood for two days. That is a good sign. Google says her heart rate can go up to 250 and Vic’s HR is only at 120 and occasionally at 155.

Oh dear God please grant my child peace. Please grant us all peace.

Celebrating a treasured friendship of sharing and understanding

Happy birthday to you…

I hardly received any 2013 New Year’s wishes. Normally I would receive so many beautiful wishes but this year I received messages for a” peaceful New Year’s Eve filled with laughter and good memories…”

Last night my sister said in a text message “what tears do 2013 hold for you? Maybe it should stay 2012”…

Jared went a friend’s home; Danie went to bed early – he is coming down with flu; Vic was asleep so that left Jon-Daniel and I. We watched Comedy Central and had some good laughs waiting for 2012 to end.

Jon-Daniel loves making his Mommy laugh. In a way I suppose he uses humour as a coping mechanism.

“I think we should wake Mom up at 12” I said

“Okay…Let’s sing Happy Birthday to Mom….” He said with a twinkle in his eyes.

As the hooters and sirens started going Jon-Daniel and I sneaked into Vic’s room and sang “Happy Birthday to you…” Vic opened her eyes and said “What is happening?” and immediately fell asleep again.

The joke was on us.

Today was a quiet day. The boys spend some wonderful quality time with their Mom. Danie remained in bed until almost 4pm as he is feeling lousy from the flu. We all drifted in and out Vic’s room. In the afternoon Jared went for a swim. Vic went outside and spoke to him.

Jared had some questions and she patiently explained to him what an “Executor’s” duties are. She explained why Leon and I were the Executors of her will and the Trustees of their Trust. (I got some lovely photos of Vic chatting to the boys!) Vic tried to show Jared that she could whistle through an acorn… Jon-Daniel taught her! As much as she tried she could not get a sound out of the acorn. To everybody’s laughter she said “But I can do it!”

We convinced her that she should get onto the inflated lilo. The cold water would reduce her body temperature and the sun would be good for the jaundice. Very reluctantly she got onto the “non- life-saving inflatable device”. I got into the pool with Vic.

Esther and Yuri arrived and she made a dash for her camera… later Leon and Henk arrived. The boys swam and laughed and played…

It was a wonderful day filled with glorious memories. We laughed and joked and eventually ate. Esther lay with Vic and they spoke about where Vic was in her journey.

It was a special day.

I think friends and family don’t know what to wish us…How do you say “Happy New Year” to a household where death is knocking on the door? I would not know what to say to us if I wasn’t me…

But from our home to yours: We wish you a great 2013. We hope that 2013 is filled with laughter, good health, abundance and time to do some good every day. We thank you for your love and support. Thank you for your prayers and words of encouragement. You have been such an amazing source of comfort to us.

Thank you Hospice for giving us the means to have these special memories! Thank you to the manufacturers of Morphine, Pethidine, Stemitil and Buscopan…

Jon-Daniel teaching his Mom to whistle through an acorn... — Jon-Daniel teaching his Mom to whistle through an acorn…

Vic trying to whistle through an acorn... — Vic trying to whistle through an acorn…

Hi Sis, you know I love you.... — Hi Sis, you know I love you….

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.

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 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”.

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/

Written on Christmas Eve 1513

I rebloggend this from Dr Bill Wooten http://drbillwooten.com/2012/12/24/written-on-christmas-eve-1513/ Thank you so much Bill!

Written on Christmas Eve, 1513

December 24, 2012 by Dr Bill

“I salute you. I am your friend, and my love for you goes deep.
There is nothing I can give you which you have not. But there is much,
very much, that, while I cannot give it, you can take. No heaven can
come to us unless our hearts find rest in it today. Take heaven!
No peace lies in the future which is not hidden in this present little instant.
Take peace! The gloom of the world is but a shadow. Behind it, yet within
our reach, is joy. There is radiance and glory in darkness, could we but see.
And to see, we have only to look. I beseech you to look!

Life is so generous a giver. But we, judging its gifts by their covering,
cast them away as ugly or heavy or hard. Remove the covering, and you
will find beneath it a living splendor, woven of love by wisdom, with power.
Welcome it, grasp it, and you touch the angel’s hand that brings it to you.
Everything we call a trial, a sorrow or a duty, believe me, that angel’s hand is there.
The gift is there and the wonder of an overshadowing presence. Your joys, too,
be not content with them as joys. They, too, conceal diviner gifts.

Life is so full of meaning and purpose, so full of beauty beneath its covering,
that you will find earth but cloaks your heaven. Courage then to claim it; that is all!
But courage you have, and the knowledge that we are pilgrims together,
wending through unknown country home.

And so, at this time, I greet you, not quite as the world sends greetings,
but with profound esteem and with the prayer that for you, now and
forever, the day breaks and shadows flee away.”

~ Fra Giovanni

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…”

Christmas’ Past…

Many years ago we started a project, where on Christmas Day, we would feed the under privileged. The first year we fed approximately 300 people. The last year (2008) that we ran the project, we fed 1500 people on Christmas Day. We had three feeding points in different squatter camps and we also handed out little gifts of face cloths, soap, toothpaste and tooth brushes at a TB Clinic.

My late father, who suffered from Alzheimers, came to live with us in 2009, and since then I have not had the time, energy or finances to continue running the project. The community has however started running a similar project, and they now fundraise themselves. For many years I cooked up to 50 turkeys, made salad and cooked rice… (I cannot handle the smell of turkey and my husband becomes nauseous when he has to carve turkey…) I suppose we are all turkeyed out….

One of the feeding points. The children are so patient and well-behaved!

Vic and her friend Lee and a community member sharing a happy moment!

“You can give without loving, but you cannot love without giving.” ― Amy Wilson-Carmichael

We also visited the TB Clinic and gave the children in the Pediatric Section gifts. Young Elizabeth, an 11 year old girl, died two weeks later. She never let go of her Christmas Teddy Bear…

“Presents are made for the pleasure of who gives them, not the merits of who receives them.”
― Carlos Ruiz Zafón, The Shadow of the Wind

A rare treat - a piece of cake for a TB patient on Christmas Day — A rare treat – a piece of cake for a TB patient on Christmas Day

“Give yourself entirely to those around you. Be generous with your blessings. A kind gesture can reach a wound that only compassion can heal.”
― Steve Maraboli, Life, the Truth, and Being Free

When my dad came to live with us I had to stop many of my community projects. It broke my heart but I knew that it was my “family’s time” In the words of Mother THeresa – “Let us make one point, that we meet each other with a smile, when it is difficult to smile. Smile at each other, make time for each other in your family.”

2012 will be a Christmas of making time for my family.

A couple of days ago Vic wistfully said “This is my last Christmas Mommy” I hope she is well enough to have a Christmas that her boys will treasure and remember for the rest of their lives. This may well be our last Christmas.

Christmas Eve 2009 - (L to R) Lee, Vic, My Dad and I — Christmas Eve 2009 – (L to R) Lee, Vic, My Dad and I

“It’s not how much we give but how much love we put into giving.” ― Mother Teresa

The right to live with dignity

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/

Thank you God

I just finished a batch of choc-chip cookies. The house is quiet and sweet smell of the biscuits has permeated the air. The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped. It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning. She lanced the cellulitis
abscess on Vic’s arm. My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face. He cried with pain. Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated. She has a kidney infection. Kidney infections make her tired. I just checked on Vic and she is sleeping so peacefully. She has a serene expression on her beautiful face and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home. I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved. I can now care for my child without having to consider my “position” in her life. I am able to be her mommy and take care of her. The boys are settled and happy living with us. We love having them so close to us. They are such well-behaved, kind and helpful boys! Before Vic moved home the boys, mainly Jared, had to cook most days. Now they are able to be children. Life has settled into an easy routine. We have laughter and fun. We cry and despair. We hug. We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking. She helped with the preparations for Jared’s 16^th birthday party. Vic passed me the spices when I baked this year’s Christmas cakes. We laughed when we decided the cake needed another “splash of brandy”. Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person. He is my rock and pillar. He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.

Tears and prayers…

I started wrapping Christmas gifts today. It is such a fun part of Christmas. Vic came and sat with me. Her face incredibly sad… “What’s wrong Baby?”

“My heart is hurting Mommy.”

“Vic there is nothing wrong with your heart? Do you have pain? What’s wrong?” I panicked.

Vic laughed …”No Mommy, my heart is sad. I think it is my last Christmas…”

“Baby, the doctors said you would not live to be 12 and you are still alive. You will beat this again….”

My little angel girl looked at me with so much sadness in her eyes…It broke my heart. In my heart I know she is right.

“Mom I am so lonely…”

“I know Baby.”

“Everybody has somebody – I miss having a partner, a soul mate…”

“I know Angel. I was on my own for a long time – remember?”

“Yes but now you have Dad. I will never have someone in my life again….” Vic said

I have no words for my child. Only tears and prayers….

Vic’s sacred tears

There is a Sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief and unspeakable Love. ~Washington Irving

I have been quite busy album-making for Christmas. Over the past month I have gone through thousands of photos!

One of the most touching photos I came across, was a photo of Vic where she is crying. She was not crying from pain or fear. She was crying from pride and happiness…

tears of pride and joy........ — tears of pride and joy……..

Then I saw this “Status” of an old schoolfriend and I knew I had to post about the sacredness of tears. I posted the quote earlier but after going through the photographs I decided to actually write about Vic’s tears.

Vic was a little girl of about 7 years of age. We were driving home from the school sports day. I looked in the mirror and saw the tears running down her cheeks….

What’s wrong angel? I asked

“I also want to run Mommy….” She said

I have seen tears of pain in her eyes more times than I wish to remember.

I have seen tears of fear shimmering in her eyes many, many times.

I have seen tears of sadness roll down her cheeks…tears of despair…

I have seen tears of resignation

I have also seen tears in the eyes of her Gastrointestinal Surgeon when he said “No More”

But the tears that I will always want to remember are the tears of pride that Vic has cried. She has cried at Jon-Daniel’s Prize Giving’s, school concerts and when Jared plays guitar in Church and at recitals, Jared’s confirmation…

Vic’s tears are sacred. They are like rain on the windows to her soul. In the words of Eileen Mayhew” “Let your tears come. Let them water your soul.”

I love you angel child! Maybe you will cry tears of happiness again one day…

10 days to Christmas Eve…

It has been a crazy week. Between Vic, final 2012 business meetings, a brochure photo shoot, visiting grandchildren, Jared’s birthday party and Hospice meetings I have run around in circles. I have not had time to blog or read all the blogs I am following.

Vic has had a reasonable week. I can see her getting weaker every day. At night I give Vic a Pethidine, Zantac and Buscopan injection. The Pethidine makes her sleepy. During the day she is able to tell me she needs an anti-nausea injection. At night the drug-induced sleep does not allow her the luxury of early warning. Vic projectile vomits every day of her life!

Vic has also had a couple of uncontrolled sneezing attacks and lots of hiccups. I fear she will fracture ribs and vertebrae if we are not able to control this quickly. I have started giving her antihistamine tablets. Hospice tells me it is a symptom of the kidney and liver failure and will get much worse.

Her arm is still very inflamed and painful. We are now on the 3^rd round of antibiotics. The tissue in her derriere is very poor. It is lumpy and bruised. It is becoming more and more difficult finding good tissue where I can inject her.

Emotionally it is really a difficult time. Vic is spending as much time with the boys as possible. She is doing a lot of what appears to be “lasts”….

It is 11 days to Christmas, and we are looking forward to a quiet Christmas Eve with the family. Our gifts are not as extravagant as other years. Our priorities are simply different this year. This year Christmas will be a time of love and togetherness.

It is 10 days to Christmas Eve…

SET YOU FREE

A dear blogger friend of mine, Judy Unger, http://myjourneysinsight.com/ has generously mailed me a parcel with some of her songs. She also wrote me a very touching email and appended a beautiful song sung by her. The song, SET YOU FREE, http://judyunger.files.wordpress.com/2010/10/set-you-free-9_26_12-copyright-2012-by-judy-unger.mp3 was written by Judy when she faced losing her father and is hauntingly beautiful!

SET YOU FREE

You’re hanging on as night turns to dawn

I know you can’t stay and soon you’ll be gone

we both know it’s hard to let go; wherever you are my love won’t be far

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

There is no fear and your leaving is clear

we’ll still have our love it remains with each tear

I cry as you leave but I truly believe; as you leave my sight we’ll both be all right

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

though you have flown to somewhere unknown

we’re never apart ‘cause you’re here in my heart

your smile, your touch, your voice, your face; your essence I will never replace

though I long for you to hold me; I need to set you free

Vic is not having a good day. She is so brave, but it is clear to all that she is slowly losing the battle.

The cellulitis in her arm is slowly clearing, the pain and nausea is under control but Vic is weaker. She looks old and drawn – the pain clearly etched on her little face. My heart physically aches when I look at her, and I know that my love will follow her, wherever she may go..

I know I must set Vic free. I need to release her from the hell she lives. I echo Judy’s words “You’re hanging on as night turns to dawn; I know you can’t stay and soon you’ll be gone; we both know it’s hard to let go; wherever you are my love won’t be far”

Thank you Judy for your compassion and sharing your beautiful songs with me.

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Written on Christmas Eve, 1513

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