Who knew that you could fly dear Vic?
One day you sprouted wings
to soar.
Valiantly ascending heavenward
despite all you had endured.
At last the pain subsided
and all at once was gone.
You left a radiant legacy
that lovingly carries on.
A beautiful spirit in the sky.
Now free from sorrow, hurt and pain.
so many loved ones
here on earth
await embracing you again.
Deaconfamilysentiments©
Wendie Jeanne Deacon©
A theory I live by, a theory that saves my life~ It’s also an incredible and thoughtful way to express to people in your world/life what having a chronic illness is like. They’ll get it much easier by relating to spoons of all things~
Thank you to the author of this piece Christine. You have helped me save so many relationships with people who just did not get it. If you have read this before Bravo, you are doing as much as you can to communicate what your life, days are like.
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, The Spoon Theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point.
I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet.
I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”
I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away.
Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone.
Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry.
I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely.
Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war.
It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”. After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine.
I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness.
Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© 2003 by Christine Miserandino Butyoudontlooksick.com
Day 22 has finally arrived. Day 21 dragged on and on… I waded through a haze of misery today. Jared had an horrible day. I could see he had cried.
Jon-Daniel has a friend sleeping over. He is a young boy of 14 who lost his dad to a drug overdose a year ago. I asked whether he had been for counselling. He said he had but that it had not really helped.
“I had to get over it by myself” this old soul said.
“The shrink kept telling me I must forgive my dad. I hated my father for using drugs. So I stopped going. He wasn’t listening to me so there was no point…”
I have to travel to an exhibition in the UAE from the 16th – 21st of February. Upon my return the boys and I will go and see the Hospice psychiatrist again. I think we would have worked through enough grief to be able to cope with this part of our journey.
Children are so fragile. On the surface they appear to be coping yet the pain lies shallow…
Last night Jon-Daniel cried. Today Jared battled to breathe.
It has been a day filled with back to back meetings. I coped well (I think) and managed to focus. It was strange not checking my phone every couple of minutes to see whether Vic is okay or not.
I sent the boys’ text messages early evening as the meetings continued into the night.
Me to Jared: “Hi baby – you okay?”
Jared: “Hey Oumie. I’m okay thanks and you?”
Me: “Missing you”
Jared: “Missing you too Oumie. This house feels empty”
Me: “Will phone later just in a meeting”
Jared: “Owkay Oumie”
Me: “Sleep tight angel! Pse wake me so I can see you tomorrow”
Jared “Owkay mommy I will!!! Love you!!! Missing you too Oumie”
Breathe in, breath out, breathe in, breathe out…. I could not look up. I was petrified that that my colleagues would see the tears that formed in my eyes.
These poor boys! They are stoic in their grief. They carry on bravely at school and with all their extramural activities. They are so young to have gone through so much pain and loss. They lost their childhoods to Osteogenesis Imperfecta and doctor error; they have watched their mother suffer horrific pain, lose her dignity…Yet they witnessed their incredibly beautiful mother fight every second of her life to stay alive… She showered them with love and taught them independence. She was strict and her favourite words to them was “I am your Mother not your excuse”
The boys are brave like their warrior mother! A credit to her!
I wish I could wipe the pain from their hearts and memories. There is however no Ketamine Infusion for emotional pain, only for physical pain. I wish I could protect them for pain and loss but I cannot. I must continue with the phenomenal work their mother started in their upbringing. I must help them to continue growing and individuals on this path Vic put them on…
I miss my child more than I ever thought I would. I honestly thought, because of the extended “Anticipatory Grief” period, that we went through, the grief would be less after Vic’s death. That anticipatory grief is however NOTHING compared to the pain we are experiencing 17 days after Vic’s death. I don’t know whether I will ever get used to this void in my heart.
Will I ever be able to breathe without pain again? Will I ever sleep again? Will I ever laugh spontaneously with joy again?
I actually just don’t want to live with this pain…..
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 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/
Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”
“Oh…” she said. “Why not? I think I will…”
We laughed.
In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.
Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.
Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!
“I am so tired” Vic cries and seconds later she will try and get out of bed, so she can stay awake!
In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”
I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.
The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.
Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.
Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”
Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?
I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.
I am babbling.
Vic is very restless and agitated. Hospice says that at this stage they normally sedate the patients to make the passing easier. It would be a wonderful solution. Vic’s mind is mostly crystal clear and busier than ever. She continuously asks for photos to be taken, not necessarily of herself but of the boys, her friends and family. Last night I actually said to her (after her insisting on photos being taken of me – on my own) “Sweetie, you cannot take your cell phone to heaven with you.”
“Oh…” she said. “Why not? I think I will…”
We laughed.
In her desperate attempts to cling to life she is trying to capture images on her phone…I do know that she is imbedding the images on her heart and she will take the images of her loved ones with her.
Last night was very difficult. The Pethidine makes her hyper. She fights sleep at night! Vic is scared she will close her eyes and never open them again.
Vic clung to Danie’s hands when he came to say goodnight. “Don’t leave me Daddy! Please don’t leave me!!! I am so scared!” Poor Danie was totally distraught!
“I am so tired” Vic cries and seconds later she will try to get out of bed so she can stay awake!
In the early hours of the morning I was exhausted when I eventually got inpatient with Vic and told her to get into bed. She looked at me and said “I sometimes think you love me to death but other times I think you hate me…”
I know she is confused at times. I will not allow these words to haunt me later. She “sees” people. She babbles non-stop.
The weight is falling off her. Her trembling fingers are bony, almost skeleton like. Her eyes are sunken and reflect her pain and anguish. My poor baby is starving to death! She has absolutely no appetite. I don’t know when last she was hungry or able to eat.
Esther and Leon came to visit today. Esther was very emotional when she saw Vic. I know she said her goodbyes today. I could see that they had spoken to their boys. Both Henk and Yuri kissed Vic whilst she was sleeping.
Jared asked me today why I don’t sedate Vic. I explained to him that she refuses to be sedated. “I think it will be better for Mom to sleep all the time now Oumie. It is too hard for her now and she is too scared…Ask Sr Siza to give her some sedation…”
Oh Lord how do I make this easier for my family? How do I spare the boys the pain of seeing their mother dying bit by bit? Do I send them to their father and have them hate me for it or do I subject them to the horror of what’s happening?
I wish Vic was in a hospital where the decisions weren’t mine. But I promised Vic “no more hospitals”. I will never go back on my word.
I am babbling.
” Sometimes the pain’s too strong to bear…and life gets so hard you just don’t care. You feel so alone you just sit and cry…every second you wish you could die.”
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 1st 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.
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…
Sue came in this morning and managed to find a vein. The vein held for the Perfalgan and she also managed to get a bag of saline into Vic. This will hopefully rehydrate her. It has been a rough 24 hours with so much vomiting. The poor child…
We hooked the saline onto a hanger and it now hangs from her ceiling. Leon, SiL, put a hook into her ceiling and we have suspended the drip from it. I have to keep the drip flowing until 12pm tonight when I can run another lot of Perfalgan. Tomorrow Sue will try to find another vein.
I suggested that Vic is mainlined or a stent is fitted. Sue agreed that it would certainly make life a lot easier. It would be easier to administer all Vic’s IV medication. Vic said “Sorry Mommy, no hospitals…”
Her heart rate, even whilst she is sleeping, is constantly above 110.
The IV medication immediately helped. Vic’s breathing is better. Vic has not vomited since 11 am this morning! She even managed to have a bit to eat tonight.
When Sue left today she asked me what is holding Vic back. Medically and clinically speaking there is no explanation why Vic is still alive…. She said that she has never seen anybody fight death the way Vic does… She asked me whether we have given Vic permission to die…
Sue says that Vic still says we are going to Italy next year…. Her kidneys and liver have failed. That is what the blood tests show.
What is holding Vic back? Sue says death happens when one relaxes completely and deeply! Vic’s adrenaline levels are preventing her from relaxing and dying.
All I want is for my little girl to find peace and her suffering to end.
Esther and Leon brought dinner tonight and just visited. Vic even got out of bed for a while and had a laugh. It was great being surrounded by the love of the family.
I wish I knew what to do to make Vic accept the inevitable. I wish with every fibre of my body Vic will find peace. That she will find the strength to let go…
Vic has been ill for such a long time. Maybe she just thinks this is how life is. Maybe she cannot remember what it is like to feel good, go out, be carefree, move without pain. To play with her kids, go out for drinks or a movie with a friend.
On Christmas Eve Siza said to Vic “I read in the Bible that Heaven is a great place”….
Here On Earth …, There In Heaven…
Here on earth imperfection, there in heaven perfection
Here on earth discontent, there in heaven content
Here on earth disgrace, there in heaven grace
Here on earth disease, there in heaven ease
Here on earth hatred, there in heaven love
Here on earth war, there in heaven peace
Here on earth decay, there in heaven freshness
Here on earth selfish, there in heaven selfless
Here on earth oppression, there in heaven liberty
Here on earth agonize, there in heaven relax
It’s either on earth, or in heaven
The decision, all yours
Obed Akuma
Baby Girl it is time for Heaven… You have to let go!
Today was an horrible day. Dr Sue spent a lot of time with Vic. Siza (Hospice Nurse) was here too.
Vic’s BP is elevated and her heart rate fluctuates between 115 and 120. Her breathing is laboured. She appears to be a little jaundiced. Sue says the vomiting is due to the kidney failure.
Tomorrow we will try and run some Perfalgan intravenously. If only her veins were strong enough to tolerate an IV drip…
I am scared.
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 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.
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/
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
It is Christmas. It is a warm, and sunny-day, and my heart is cold.
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…”
“Nobody wants to die, Vicky. We all will walk this path. Some sooner than others… You have a degenerative illness and your body is tired…”
“You must surrender your body to God. It is time for your brain to make peace with what is happening in your body.” Siza said. “Where is your Bible?”
Siza read from Ecclesiastes 3 – New International Version (NIV)
3 There is a time for everything,
and a season for every activity under the heavens:2 a time to be born and a time to die,
a time to plant and a time to uproot,
3 a time to kill and a time to heal,
a time to tear down and a time to build,
4 a time to weep and a time to laugh,
a time to mourn and a time to dance,
5 a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain from embracing,
6 a time to search and a time to give up,
a time to keep and a time to throw away,
7 a time to tear and a time to mend,
a time to be silent and a time to speak,
8 a time to love and a time to hate,
a time for war and a time for peace.
Siza prayed for Vic and the family for peace and grace in this time. Vic cried and Danie gently held her.
Danie, and I walked with Siza. Her eyes were sad when she said “Her body is shutting down. It could be quick or it could be a few weeks.”
The rest of Christmas Eve passed as if I was in a daze. Lani and the kids arrived, my dear friend Judy arrived after a marathon charity event and the smell of gammon and roast lamb permeated the house. The tables looked festive and there were tons of gifts under the tree.
Vic handed out the gifts. The kids shrieked with delight. A lot of thought went into the gifts. The gifts were truly gifts of love.
3 There is a time for everything,
and a season for every activity under the heavens:
a time to be born and a time 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…”
Vic's Final Journey 