Tag Archive: child death
Today was an amazing day. I desperately miss my beautiful child.
I woke up early this morning remembering that I had a 8am meeting with the Hospice Bereavement Councillor or psychiatrist, whatever you prefer to call Alan. I looked at the time on my cell phone (can’t read my watch without my glasses) and thought to myself
“Hmmm, I need 45 minutes travelling time, 30 minutes to shower, dress, do my make-up and 15 minutes for breakfast and tea…”
I lay there in my war bed and decided I would be very rude and I would LIE – I would let Alan know I am stuck in the traffic… Writing this I am so ashamed for blatantly lying to this good man but it is done! I cannot undo the lie or my decision not to go… I will however confess if I see him again.
My first business appointment of the day was at 11am so I decided to lie in and check my emails in bed. There was a comment on one of my first posts…I reread the post and the next and the next and the next… I reread every one of the 335 posts I had written.
Other times, when I reread any of my journal entries or blog posts, I teared up. Today I did not. I was filled with relief.
I reread my baby girl’s journey filled with unbearable pain, suffering, discomfort, loneliness and indignity. The more I read the more I realised how selfish I was being. I took cognisance of the fact that in the early days of my blog I was careful with my words… Today I realised how much was never written. I was shocked at how little I had actually written of Vic’s pain… I remembered my child’s screams of pain and tears … I remembered how I prayed that her dreadful journey would end.
Today I was grateful that her suffering was over!
Does that mean I am “over” the death of my child? No! No! No! But I am at peace today that Vic is free of pain…
I missed her today as I will tomorrow, the day after tomorrow, next year and forever!
Vic and I
23.5.2012
At about 01:00 this morning Vic came into my room and got into bed with me. Her tummy was cramping badly and she was scared. She just lay with me for a long time, sobbing and talking about her fears.
E.H.Chapin said: “Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars”…
Sobbing her little heart out she expressed her fear of how Danie and I will cope with her death… She asked me to remind Jon-Daniel of how he made her laugh when she was sad, Jared how much he helped her…
She told me I will have to be stricter with the boys after she is gone… She asks me to deliver her eulogy at her funeral…
19.6.2012
Today was a day out of hell for Vicky. She is deadly pale – she actually has a ghost like appearance. She was so ill that she was unable to take pain medication and now her pain is out of control.
If I am having a hard time with this how must this poor child feel? HOW CAN SHE CARRY ON??? http://tersiaburger.com/2012/06/19/37-years-on-death-row/
9.7.2012
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed with pain when I changed her. Seeing my child sick and in pain, every day of her life , kills me. I am dying, painfully slowly from my child’s pain. http://tersiaburger.com/2012/07/09/i-am-dying-9-7-2012/
12.8.2012
Vic is still a very sick little girl. The fact that her pain is better controlled does not mean that she is well. If any of us had spent the amount of time vomiting and cramping that she has this week we would be in bed hooked up to an IV and praying for death. This week Vic’s amazing resilience again amazed me. She is strong beyond comprehension!
My heart bleeds for her that her fragile body has once again failed her incredible will to live. It is clear that she is merely holding onto life, as she knows it, with her fingertips……
I will go to the meeting with Prof Froehlich and continue my fight for Hospice to become involved. Vic will never function on any level again. She is confined to bed relying on medication to keep her sane. Maybe she will have a good couple of days here or there but her sentence has not been commuted. http://tersiaburger.com/2012/08/12/mommy-i-broke-my-back/
Schedule 6 medication – 28 days supply
Rest of Vic’s medication – decanted
21.8.2012
Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.
I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!
Today was a bad day – again. http://tersiaburger.com/2012/08/21/today-was-a-bad-day/
2.10.2012
This evening she asked if she could have her injection a little earlier. Jared is going back to theatre tomorrow morning to have his stent removed. “Mommy, I need to try and sleep so I can be with my son tomorrow”
It is as if her wish triggered an avalanche of events.
Vic has been projectile vomiting since, and the perspiration is pouring off her. Her heart is racing, and her blood pressure is all over. Her abdomen is so distended and extremely tender on the abscess side!
Vic will not be at her son’s side tomorrow when he is readmitted to hospital.
http://tersiaburger.com/2012/10/02/mommy-i-need-to-try-and-sleep/
4.1.2013
14.10.2012
Life has ground to a slow, agonizing halt… Vic floats from one pain filled day in bed to the next. When she has a good and busy day, like yesterday, she pays the price for weeks. Vic has not been out of bed today. She is deadly pale and drawn.
It is hard for her not having privacy. Vic is embarrassed that I hold her hair or wipe her face when she is vomiting. Yet she needs me with her….
We are however in this together as a family. It is a rough journey for everyone.
“I am so sorry Mommy…” …it echoes through my heart.
“I love you my angel” I whisper…. http://tersiaburger.com/2012/10/14/i-am-sorry-mommy/
12.11.2012
We have already had so many “extra” years. But the fact remains that Vic is ill. Today she is more ill than yesterday or even last week or last month. It is not an UTI causing the pain and fever. Her pain control is good enough to mask symptoms. Waves of severe nausea and cramping remain…
I don’t even want to consider the possibility that the pain is caused by Vic’s organs slowly starting to shut down….. One organ after another…. I have read that it feels “uncomfortable”. It is called terminal agitation.
Only time will tell…. Time is all we have….
How did it get late so soon? http://tersiaburger.com/2012/11/12/how-did-it-get-late-so-soon-dr-seuss/
21.10.2012
There have been times in the past couple of months that all Vic can do is lie in bed and breathe. Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement. There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milk shake. She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!
Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused. She is on the down ride hurdling to who knows what stage of her journey.
Vic is so sad that she is unable to actively participate in her children’s lives. Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”. http://tersiaburger.com/2012/10/21/vics-roller-coaster/
Mothersday 2012
14.11.2012
Vic had a night out of hell! The nausea was vicious and unrelenting. Pain reduced Vic to a whimpering bundle of human flesh.
Vic’s palliative Care physician, Dr Sue, visited Vic this morning. I think she was a little taken aback by Vic’s condition.
Sue is an amazing person. She was so gentle with Vic. Vic’s heart rate is fast and her blood pressure is 101/58. Vic has a bronchial infection, her liver is taking severe strain and the sepsis has flared up – badly. Her oxygen saturation levels are low – 90%.
Sue gently explained that although Vic is running a fever her body’s “warning systems” have started shutting down….. Vic is very warm to the touch, yet the thermometer only reflects a temperature of 36.8⁰.
18.11.2012
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 http://tersiaburger.com/2012/11/18/worrying-doesnt-empty-tomorrow-of-its-sorrow-it-empties-today-of-its-strength/
27.11.2012
Hospice has just fitted a subcutaneous driver – again. Vic’s pain has spiralled out of control over the past couple of days.
Vic was in absolute excruciating pain during the night. She battled to breath.
“Help me Mommy! I can’t stand the pain anymore…”
I lay next to her and put constant pressure on the area that hurt most. It was just below her ribcage – liver. “Oh Mommy, it is so sore. Can you feel how sore it is?
As a little girl Vic used to believe that I could “feel” her pain…
“Feel how sore my toe is Mommy…”
As I lay there with my hand on her “sore” I wished with every fibre in my body that I could lay my hand on her sick body and soak up the pain and disease. It cannot be so I look for a new spot on her bum to stick in a needle. http://tersiaburger.com/2012/11/27/mommy-can-you-feel-how-sore-it-is/
3.12.2012
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
God please have mercy on my child. http://tersiaburger.com/2012/12/03/we-need-a-miracle-again/
5.12.2012
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
“Then I can die…”
http://tersiaburger.com/2012/12/05/next-year-my-mom-and-i-are-going-to-italy/
Cellulitis
5.12.2012
12:42am and Vic is sleeping peacefully. She had a “good” day. In between her naps she had lunch with a friend, a visit from Esther and a walk in the garden with Jared!
Vic’s legs are growing very weak. The cellulitis on her arm has worsened despite the antibiotics. It is now oozing pus. Sr Siza will see her tomorrow, and I believe Vic will have to go onto IV antibiotics. She had a violent vomiting spell just after she took her antibiotic tablets tonight. It is very difficult for her to keep tablets and food down. Despite the six-hourly anti-nausea injections she has…. And of course there is the problem of the poor absorption.
“I can’t do this anymore…” Vic mumbled to herself tonight after the vomiting episode. http://tersiaburger.com/2012/12/05/vic-is-sleeping-peacefully/
7.12.2012
Vic’s arm is very painful. The antibiotics have not started working yet. Dr Sue will come and see her tomorrow morning, and we will then decide whether it warrants hospitalization. Obviously Vic need intravenous antibiotics and her tissue is too poor….
Tonight Vic had one of her worst vomiting spells yet. It happened after 02:00am and her dinner of 7.30pm had not digested yet. It is obvious that the oral antibiotics are not being absorbed. http://tersiaburger.com/2012/12/07/tomorrow-may-be-a-rough-day/
7.12.2012
I ran down the passage knowing that my poor child had vomited again. The poor little thing was standing in the shower covered in her 7 pm dinner and antibiotic tablets. The food had not digested at all. She was shivering and crying.
I cleaned up whilst Vic showered.
“I am sorry Mommy. I am so sorry Mommy”… Vic sobbed.
“I can’t do this anymore Mommy. I don’t want to live like this anymore….”
I eventually got into bed at 5am. Three hours sleep used to be enough sleep when I was younger. I think I am getting old. I need more than 3 hours. Maybe it is time to look at a night nurse…..
Hospice called early this morning. The antibiotics have been changed to IM injections. We cannot put up an IV drip. Sr Siza told Vic she should be admitted to hospital to have the abscess lanced and drained. Vic refused. “No more hospitals. Mommy you promised…”
Monday morning Dr Sue will come to the house and do the procedure here.
http://tersiaburger.com/2012/12/07/the-night-was-not-over/
Vic and her Dad
20.12.2012
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
http://tersiaburger.com/2012/12/20/i-dont-want-to-die/
25.12.2012
This is our last Christmas as a complete family.
Vic has been vomiting non-stop. The acid has burnt the inside of her mouth. Her derriere is so lumpy, black and blue from the constant injections. Sr Siza popped in. She examined Vic and started drawing up a Clopamon and Morphine injection.
“Please Sister, not my bum. Please do it on my thigh.”
Vic no longer has an appetite. She is sleeping at least 20 out of 24 hours. Vic is very warm to the touch and appears flushed. The thermometer reflects a temperature of 37 degrees C.
“Do you understand what your body is telling you Vic?” Siza asked
Vic nodded and whispered “I do not want to die…”
http://tersiaburger.com/2012/12/25/a-time-to-be-born-and-a-time-to-die/
Jon-Daniel telling his Mommy he received his honours blazer
2.1.2013
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” http://tersiaburger.com/2013/01/02/sisters-by-heart/
Jared just quietly sitting with his mommy
1.7.2012
Vic worries about the family’s ability to cope with her illness and eventual death. When Jared whispered to her “Mommy, I want your face to be the first thing I see when I wake up from the operation” he validated her fears…
Vic often says “You know Mom I worry how Daddy is going to cope with my death…” or “Mommy, do you think the boys will cope without me?” or “Promise me you will go for counselling when it is over…”
No amount of reassurance will comfort her…Vic in time will have to let go. She knows how deeply we love her and what void her passing will leave in all our lives. If you lose a marriage partner it is possible to find another partner and experience love again but if you lose a child or parent…how do you replace a child or parent?
Vic is quite hard on the boys (for their own good I must add). She always says “I am your Mother not your excuse”
And then on the 10 th of September 2012 I blogged the words that I want to repeat today…
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
http://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/
I promise I will go back to Alan. I love you so much Vic!
Today I smiled. It may have been a sad smile but it was the smile of a mother who is at peace with her beloved child being pain-free.
The four of us on Christmas Eve 2012
24.12.2012
I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.
So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”
In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”
When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…
My standard answer to Vic was “I will be okay baby!”
Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”
“I will be fine. I will be grateful that your suffering is over…But I promise I will!”
I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…
So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.
We spoke briefly about the boys, but Alan firmly said that today we would focus on me…
I bravely started talking without waiting to be prompted. After all, that is why I was there.
“I knew that I would miss Vic after her death but nothing could prepare me for this” I said
“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.
I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.
I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…
I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…
I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.
I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.
I saw Alan look at the clock on the wall. I knew our time was almost up.
He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.
“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”
That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.
On the 9th of October 2012 I posted these words
http://tersiaburger.com/2012/10/09/is-there-pain-after-death-post-2/
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind, but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
Vic and I discussed this post… We cried then, and I cry now.
I pray that I will find peace.
This is a very emotional time in all our lives. It is 8 weeks and 2 days since Vic died. We have all lived on our nerves for a long time and although we thought it would be a relief that Vic’s suffering was over, the grief has been overwhelming. Not only for the boys and I but also others that loved Vic…
I know the family is concerned about me. I know their concern stems from love.
I however need to blog. I need to hear from other bereaved parents that I am not going mad. That my grief is normal and that it is okay to grieve for my beautiful child.
I have subscribed to several blogs or sites for bereaved parents and it is not working for me. It is other parents words.
I will however borrow these words from another grieving parent
Dear Clueless
I would like to share with you my pain but that isn’t possible unless you have lost a child yourself and that I wouldn’t want you to have to experience. So with that being said, I would like to say this. I will try to my best to understand you if you try to understand me. I lost my child. My life will never be the same. I will never be the same again. I will be different from now on. I no longer have the same feelings about anything. Everything in my life has changed from the moment my child left to go to heaven. I will, on some days be very sad and nothing you say will changes that so don’t feel like it is your job to make me feel better on those days, just allow me to be where I am.
When you lose a child you not only lose your reason for living, you lose the motivation to go on. You also lose your sense of self. It takes a long time to come to some kind of understanding for why this has happened, if ever. Of course we who have lost children know we have to go on but we don’t want to hear someone else tell us too. Especially from someone who has not lost a child. It makes me and anyone who has lost a child want to say who are you to tell me that? Did you bury your child? I don’t want this to sound like I don’t appreciate everything you say because I know you mean well, but I just want you to appreciate where I am coming from too. I want you to understand that some of the things you say hurt me and others like me without you really knowing it. I know it must be pretty hard to talk to people like myself, not knowing what to say. That is why I am writing this letter.
If you don’t know what to say, say nothing or just say I’m sorry. That always works for me. If you want to talk ad say my child’s name feel free I would love to hear his name anytime. You not saying his name didn’t make me forget it, or what happened to him. So by all means say his name. When special dates come or holidays come please forgive me if I’m not myself. I just can’t keep it up on those days. I may wish to be by myself so I can think about my child without putting on a front. Most of all I want you to know I’m having a hard time with the death of my child and I am trying my very best to get back into life again. Some days it may look like I have accomplished that, and other days like I am at square one.
This will happen the rest of my life periodically. There are just no words to explain the living hell this feels like. There are no words that could ever do it justice. So please bear with me and give me time and don’t put your own timetable on my grief and let me be the person I am now and not have to live up to the person you think I should be. Allow me my space and time and accept me for me. I will try my best to understand you.
Love, Your Friend in Grief https://www.facebook.com/pages/Whispers-from-Heaven/604565892890783
So, if you are going to read my blog read it through my eyes and see my heart. If you are unable to handle the rawness of my words know that you are reading my soul. Remember that I don’t easily verbalize my emotions and this blog is my coping mechanism.
I have found hundreds of notes and journal entries in a file called “Our Story.” Vic loved my blog and wanted me to share “Our Story”. It was her wish. I will continue to do so.
So, love me in my time of sorrow and allow me to cope whichever way I can…. I love you too and appreciate your caring.
Vic and some of her highschool friends
I am systematically packing up Vic’s belongings. It has been a humongous job! Vic was a squirrel – she hoarded!
I have discarded hundreds of old VCR tapes….thousands of photos and many hundreds of cards. The “Good luck with exam cards” were totally wasted on Vic – I came across her school reports again…; get better cards, I love you cards and thank you for your friendship cards from her school friends; lots and lots of Valentine cards…
The one card that got to me was a card that read:-
“To My Daughter
So many times
When you were a child,
I looked upon your
Sleeping face
And wondered
What kind of woman
You’d grow up to be?”
Then on the inside of the card it reads “You grew up as wonderful as I imagined”
Today I can categorically state that was not true. Vic grew up to be a far more wonderful person than I could ever have imagined.
Vic was kind and generous. Vic always smiled. Vic loved unconditionally and never judged. Vic was devoid of bitterness and hate. She never spoke unkind words. Her bravery goes without saying… Vic is the bravest person I know. Vic always said “I am fine thank you…” The shrillness of the “fine” was the “stress-indicator” of how ill she was.
The cards her school friends wrote were to thank her for her friendship and support. Gia wrote on the 26th of March – year unknown: “This is just a short note to say thanks for all your help, attention, help and love while I’ve been under the weather…” On the 28th of October 1991 Tatum wrote “You’re a great friend and I am dreading this time next year when we all have to say goodbye. Thank you for being you and putting up with me…” Monique wrote “Thanx for everything. You know what everything is.”
One of the Vicky’s wrote “as friends we have walked together sharing joy, laughter and tears. Though time may pass and things may change, I’m sure you’ll agree, That one thing always stays the same…each other’s loyalty”
Mouse wrote “Vicks thank you for willingly giving help – be it a smile or a thoughtful thought – It may go unnoticed but it is appreciated”
Gia end most of her notes, cards and letters with “I’ll meet you at the end of the earth”
I truly felt like a grave robber going through Vic’s private correspondence. I cannot keep it all – there is just too much and I did not want to discard her whole life. So I have made a memory box of all her school dance invitations and photos, her friends’ notes, some boyfriends’ letters and her theatre season tickets. I have added some of the hundreds of cards I sent her over the years. Yes…Vic kept them all!!!!
How can I just wipe out her lifetimes memories? Vic treasured these items and I will keep it safely for her grandchildren to see one day… This memory box is her memory box. A tribute by her friends…
It was an experience to “see” Vic in high school. Vic insisted on going to boarding school in High School and she was accepted at one of the most prestigious girl schools in South Africa. Vic LOVED the freedom and camaraderie of boarding school. She got up to a lot of mischief! I have now personally seen the photos of what the girls got up too…
But I am so glad. I have come to realise that I never truly allowed Vic to grow up. I was an over protective mother and quite honestly maybe even a little overbearing. Vic always remained a child. Albeit a mature child and an old soul but never the less a child.
From the day my beautiful baby girl was born I knew I had to protect her from the world. She was too tiny and beautiful for this horrible world we live in. Now my beautiful baby girl is safe from pain, hurt and the ugliness of the world.
My beautiful Angle Child
Today it was 29 long miserable days since you stopped breathing.
I have continued to breathe, walk, talk, eat, drink tea; I have attended meetings, cried and even laughed. My life has continued yet part of me is dead. I have lost my words today. I just want to have a cup of tea with you. I want to tell you how much I love you and how much I miss you.
Promises Kept
I’ve kept my promise,
of what I would do.
To continue to live,
my life without you.
I get up each morning,
I get through the day
struggling past tears,
every step of the way.
I go on with life with,
a forced happy face.
My heart aches badly,
for what I can’t replace.
I don’t know what to do,
to deaden this pain
It’s so hard, here without you,
where I must remain.
But I will keep my promise
and I must believe,
That you’ll be there waiting,
when it’s my time to leave.
-unknown
Vic and her Gramps 1.4.2011
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 15th 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.
Related posts:
Rest in peace dear friend http://tersiaburger.com/2012/08/07/rest-in-peace-dear-friend-7-8-2012/
For some dying is hard work http://tersiaburger.com/2012/07/18/487/
South African grandchildren
Yesterday I celebrated (another) birthday.
Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”
“No problem angel. I’ll switch the kettle on.” I said
“I will be back in a minute” she said
I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….
I went through to her room and the poor baby had fallen asleep on her bed…
Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.
He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.
Just before 01:00 am Vic shuffled into my TV lounge.
“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”
We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)
The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.
It was a perfect day.
Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.
All the grandchildren wanted to stay.
Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.
Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)
Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.
Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.
“I miss you so much Little Brother” Vic said
“I miss you too Vic. How are you feeling?” Jnr asked
“I am battling Boetie (Little Brother) Vic said
“We are coming to visit in April then I will see you Vic”
“I don’t know if I am going to make it to April” Vic said
“Just hang in there Vic. It is not that long to April…” Jnr consoled her
“I know but I am tired. I am just missing you” Vic cried
“I will fly over for a weekend. I want to see you again” Danie promised
Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16th birthday. It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.
I know this will more than likely be another last for Vic.
Esther, Vic and Lani
Sue saw Vic this morning. Her liver is very distended and exerting pressure on the right lung. I now have to use her little arms and legs as injection sites. I HATE injecting her in the legs. The doctor fears that she will develop abscesses on her bum. The entire derriere area is full of lumps and bruises. When I inject her the injection site becomes “lemon-peely”. The immediate area swells and becomes hard. Sometimes there is a fair amount of bleeding or serum loss. Her tissue is POOR!!!
I discussed various central line options with Sue. Vic refused point-blank to even consider it. Vic has been mainlined so many times. She always asked the anaesthetists to not tape her hair to the central line…. Vic went into septic shock from a CVV, had the needle inserted into an accessory vein and had to be returned to theatre for the removal of the needle and the cauterization of the puncture wound in the vein…. Due to her poor tissue and bleeding tendencies it took two hours!
So we discussed the way forward.
Sue gave us a script for Pethidine. We will alternate the morphine and Pethidine six-hourly. The poor pharmacist…. She went into shock when she heard that the morphine is NOT being replaced by the Pethidine… that it is in addition to the morphine.
Now it is only a matter of time. Vic’s organs are slowly shutting down. My child is gently being eased into death.
The entire day it echoed through my mind “we cannot stop this. It is happening”
Vic is calm and serene.
“Next year my mom and I are going to Italy” she told Sue today.
“Then I can die…”
“We will find a way my love” Sue said…
“It is closer that she realises” Sue said to me at her car
“Do I tell her?” I asked
“No, her body will…” Sue said
I cannot bear the thought of living without Vic.
Sr Siza examined Vic today. She phoned Dr Sue who will be in tomorrow morning. She also brought a script with for Dalacin antibiotics. The cellulitis has spread to all three the subcutaneous sites.
Siza expressed her concern at Vic’s decline…
Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”
That statement really shook me. Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions… I have never really considered living without my child.
Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters. We are hoping that they will “host” our Hospice at their premises.
The CEO knows Vicky and the boys. Jared was confirmed in his church earlier this year.
I shared with them how difficult it was to get a terminally ill person into a Hospice Program and that 95% of the dying population die in pain. Vernon (CEO) quietly listened to us and explained how difficult fundraising is. Christians are tight with their money…
Vernon then shared the following with us.
“In 2007 I was driving home from a meeting when I felt this urgent need to see Vicky. I knew she was in hospital as she was on the prayer list. I drove to the Donald Gordon (Hospital) and was directed to the ICU. The nurses welcomed me although it was way past visiting time.”
“Pray for her. We are switching the machines off tomorrow morning…” they said.
“I stood next to her bed, raised my arms and prayed that God would spare Vicky for her little boys. I stood next to a dead person that night. Two days later I heard that Vicky did not die when the machines were turned off…”
I just stared at him. I was speechless… I had no idea! It was the first time I had ever heard the story!
In June 2007 Vic had developed ARDS (Acute Respiratory Distress Syndrome) after a series of operations trying to close up an abdominal fistula. Her body was excreting up to 7 litres of faecal matter a day and she had every superbug the ICU could offer. On the Tuesday Vic went into respiratory failure and was ventilated. I was talking to her when the doctors rushed us out of ICU and put her onto the ventilator. By the Thursday her kidneys and liver had started shutting down.
ARDS is a severe lung syndrome (not a disease) caused by a variety of direct and indirect issues. It is characterized by inflammation of the lung parenchyma leading to impaired gas exchange with concomitant systemic release of inflammatory mediators causing inflammation, hypoxemia and frequently resulting in multiple organ failure. This condition is often fatal, usually requiring mechanical and admission to an intensive care unit. http://en.wikipedia.org/wiki/Acute_respiratory_distress_syndrome
My BFF, Gillian drove 350 kilometres to be with me. On the Thursday there was absolutely no sign that Vic could or would recover. Vic had a DNR and a living will that she had provided the hospital.
That evening one of the ICU doctors, Liam, hugged me and said “Mommy, Vic is tired. You must let her go…”
Gill, Leeann (Vic’s friend) and I went home after visiting hour to talk to the boys. They were already in bed when we arrived home. We sat with them
“Guys, you know how ill Mommy has been….Mommy’s lungs are not able to work on their own. Mommy’s kidneys and liver is also not working that well anymore. The doctors feel that Mommy will not be able to breathe without the machines and that Mommy has suffered too much. They think it will be better for Mommy to be taken off the machines…”
Jared quietly started to cry. Jon-Daniel was stoic. Jared was 10 years old and Jon-Daniel 8 years old.
“What will happen with us Oumie” Jon-Daniel asked.
“Sweetie, Oumie and Oupie will ALWAYS be here for you. This is your home.”
Jared cried himself to sleep. Jon-Daniel just clung to me. The three of us shared a bed that night.
The next morning early Gill, Lee and I set off to hospital. When we arrived I said “I am not going into that hospital until I have prayed in the Chapel.”
The three of us prayed and it was with absolute certainty that I KNEW Vic would not die that day.
Family and friends drifted in and out of the waiting room the whole day. My minister came and prayed for my child. Everyone said goodbye.
That afternoon Danie and I were allowed to see Vic. The “invasive” ventilator had been disconnected and she had a mask-like ventilator covering her face. It was a grotesque sight.
Danie held her little hand and his tears dripped onto her arm.
“Oh sweetie” he said, the sorrow and pain raw in his voice.
Vic opened her eyes and said “Daddy”….
Three days later Vic was discharged from ICU….. It was not her time.
Today I looked at her and fear struck at my heart. My child is slowly slipping away. Her little body is tired of the pain. Her little organs are enlarged and diseased. Her bones weak….
And the realisation hit home…. We need another miracle.
God please have mercy on my child.
I am so tired. I think it is emotional more than physical.
Vic went to the movies with her friend Tracey today. As she wanted to leave, Hospice arrived. Sr Siza was VERY dubious whether she should go… Anyway the boys went with to make sure she was okay. They are so protective of her.
When Tracey dropped her at home she was so tired she could not lift her feet. She immediately got into bed and I know it will take days for her to recover. I am grateful that she enjoyed the movie. I cannot believe my child went and saw The Twilight Saga Breaking Dawn Part 2!! She is the most anti-vampire person I know!
She said “Oh Mommy, the one part was scary but it was so much fun!”
I have read up on the effects of continued morphine administration when someone is in Renal and Liver Failure. We have no option but to continue the pain medication regime… It will help her live and yet it will certainly contribute even hasten her death.
I don’t care. I want Vic to be as pain-free as possible. It is becoming increasingly difficult to do so. She is literally on a “morphine on demand” regime. She cannot overdose – she is too used to Morphine. The dosages have been titrated over many years…
It will be a difficult night.
Yesterday I posted on “time”. Today after the visit from the Hospice sister I actually realized that just maybe Vic has entered the first stages of dying
Some of the stages of dying start to be discernible a few months before death occurs.
Vic has become less active; she rests more, sleeps more and has withdrawn into her own inner realm.
Vic is reliving memories and spends a lot of her awake time talking to the boys about her childhood, her “illustrious” school career and their childhoods. This year she relived every minute of her father’s final journey… Vic has started living in the past.
I read that it is the terminally ill’s way of taking stock of their lives and making their peace with it.
Vic no longer eats big meals and I seldom hear her say “I am ravenous”. Due to the 81 abdominal surgeries and multiple bouts of septicemia Vic’s absorption is very poor. (Poor absorption = BIG appetite!) Vic used to have the appetite of a horse – always nibbling and scrounging for food. Now it is sheer discipline that keeps her eating. She knows she cannot have medication without eating first. Strange thing is that she is not really losing weight. Hospice says it is due to the high levels of cortisone she takes… I have been told by Hospice not to worry about her loss of appetite. Her body does not need a lot of fuel (food) anymore because it is not burning a lot of energy anymore….
The effect of the reduced food and liquid intake is that the body starts producing chemicals that create a feeling of mild euphoria. Our bodies actually start relaxing into this stage of dying.
Vic still drinks a fair amount of coffee. She used to drink it warm but now she dozes off before she has finished her cup of coffee. She will wake up and take a sip of cold coffee… A cup of coffee now lasts a long time.
Vic spends the majority of the day in bed, gently dozing…. It is not a deep sleep. It is as if her little body is preparing to hibernate….preparing for what lies beyond death whether it is Heaven, Nirvana or the Other Side….
Reduced appetite and increased sleep is called “Signposts for dying”.
A couple of weeks ago Vic was very emotional. She would tear up without any reason. This stage has passed. It is as if her tears cleansed her soul.
Vic is battling with loneliness. She hates being alone. If she could she would have one of us around her all the time. She often complains that we do not spend time with her. We do spend a lot of time with her. She just dozes off and then we leave to carry on with our lives… The boys are writing exams – they have to study; I have to work…. Dying is a lonely journey
Vic is not in good shape at all. She is suffering severe cramping and nausea that is not responding to any of the medication. The Hospice Sister called the doctor this afternoon and asked her to see Vic in the morning. She also suggested that Vic be admitted to Hospice In-Patient’s. Vic and I firmly declined…
It is obvious that Vic has one or other infection. I think it is the abdominal sepsis. She seems flushed and feels hot and cold. The thermometer does not reflect her running a fever. This is obviously something as Ceza mentioned it to the doctor. She explained that this happens when the auto-immune system is compromised. I have tried to Google it but without too much success. I will ask the doctor tomorrow morning.
Vic is in terrible pain tonight. I have already given her double her normal evening morphine injections; double the quantity of morphine syrup; I have changed her Durogesic patches…. I lay behind her back and gently held her until her breathing became deep and even. She whimpered in her drug-induced sleep….
I know the shutting down process has started. Not because Hospice told me but because Vic told me.
Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!
A pensive Vic…. 2011
Two days ago I reblogged a post “Is there pain after death” written by a Dr James Salwitz. This post elicited some comments – mainly from Vic. Vic has started reading the odd post of my blog. In a way I am truly okay with it but on the other hand I find it difficult to blog my fears and emotions knowing that Vic may read the post. I find that I have become guarded in what I am writing. I am thinking that I should blog about stuff that may allay Vic’s fears….
Yesterday Vic asked “Mommy, I know what we believe in but what if there is more pain after I died?”
“You read my blog?” I asked.
“Yes” Vic replied.
“Sweetie, I believe that when the time comes our loved ones will be our guardian angels and hold our hands whilst we cross over….”
“I know that Mommy but what if I am still in pain… What if the pain does not stop?”
“Sweetie, the pain that continues after death is the emotional pain that belong to the loved ones that are left behind. That is what the post is about…..”
Tears welled up in Vic’s eyes and she said “I know that Mommy but what if I am still in pain… What if the pain does not stop? What if your pain does not stop?”
Andrew, http://lymphomajourney.wordpress.com/, commented as follows… “Even before one leaves, I always thought it more difficult on my family to watch me go through what was pretty aggressive treatment than on me.”
sbcallahan, http://thedrsays.org commented…”this is one of the difficult things about being the one who leaves. to know that your loved ones are going to suffer more than they already have is heartbreaking.”
“how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them.” http://thedrsays.org/2011/03/
I am beginning to think it is easier to be the person leaving than the one being left. I have always known that about relationships and breaking up but now realize that it is the same when someone you love is dying. My husband became suddenly angry and I knew there was something wrong. it is so unlike him to get angry over nothing that I was completely off guard. we had been watching the movie “steel magnolia’s” and he asked me what Julia Roberts was dying from and I told him kidney failure. later when he was able to talk, he shared that it had reminded him of my own kidney failure and near death. we live in limbo waiting each week for blood tests to know if I am back in failure or good for a few more days. I don’t really think about it and when he shared his fear my heart ached. The sad thing is I have no fear and realize more and more how hard this is for him. I know that he will be fine in the end but it is hard for him to imagine he will be fine without me. It is so much harder to be the one being left behind. http://thedrsays.org/2011/03/25/the-one/
Vic so often tells me how worried she is about the family. She worries about how the boys, her dad and I will cope. Whether we will cope…. whether we will be able to get over her eventual passing…. Andrew and sbcallahan write about their fears… for their loved ones. It is a fear that all terminally ill people appear to have.
My Mom died a bad death! Two weeks after major surgery she died an agonizing death from septicemia We could see the gangrene spread…. She was burning up with fever and no amount of pain medication could dull or relieve the pain. God alone knows what went through her mind because she was ventilated. When my Mom finally died we were so relieved. We were relieved that her suffering was over. We were traumatized by the dying process not her death.
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
Last night was an absolute night out of hell.
The subcutaneous syringe driver was halted as Vic’s tissue is so bad. Vic is now on 100mg Durogesic patches and morphine syrup. Initially it appeared to be an okay solution. Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.
Yesterday morning Vic was great! She obviously still has some of the intravenous morphine in her system. (I also gave her extra morphine syrup as a precaution). She went to breakfast with her friend Angela and had a wonderful time. She glowed when she got back. Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking. Madam was even wearing a shoe with a little heel (which we made her take off).
In the afternoon Vic started looking grim. She was nauseous and suffering from abdominal cramping. Her tummy was distending.
By 10pm last night Vicky was sobbing with pain. By 11pm she was vomiting uncontrollably. She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.
This morning I had an early meeting. Half an hour into the meeting Vic phoned sobbing uncontrollably. I was unable to hear what she was saying through her sobs. I just said “Baby, I am on my way…”
When I arrived at home Sr Ciza from Hospice was here. She had given Vic a morphine injection and an additional 25mg Durogesic patch. Vic was already looking so much better. Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge. I don’t think I am ready for that yet.
Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared. Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast. I nodded my “consent”. You see I had just read a comment from an incredible brave lady.
“my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. while i see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before. My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/“
Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy http://ohwhatapain.wordpress.com/author/ohwhatapain
The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane. Since my first surgery, my life has basically come to a screeching halt. Any living I do is now in the slow lane, sometimes I never even make it off the shoulder. I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings.
It’s hard to deal with the slow down. I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that? Before “all this” I felt so strong. I felt like I could take on the world. I used to be busy everyday, all day and the craziness of my schedule was like a high. Now, I have maybe a quarter of that activity, some days, I have none. The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house. Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion. But I am still me. I refuse to let the pain change who I am.
I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse. I still push myself to do more, even if it comes with the cost of a day in bed. When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often. That part of my brain that refuses to accept this “new normal” can’t give up certain things. One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body. A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”
Sometimes the slow down causes resentment. I get angry that those around me have a life and are busy and that adds to the mood swings and depression. The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest. For me, a trip to Wal-mart requires a rest.
Flares do bring up an interesting realization, though. Until things get as bad as they are right now, I didn’t realize that I was in less pain before. So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison. Now if only I could return to feeling like crap instead of complete crap…
So, the bottom line is, what do you do when life slows you down? http://ohwhatapain.wordpress.com/2012/09/26/flares
I wish I had understood Vic’s pain-filled world earlier. I am so sorry for getting angry with her for trying to live. I wish we had more time.
