We both laughed and the moment was over…


Vic 25.6.2012

Last night was a better night.  The additional anti-nausea injections are working.   I hope the antibiotics are working.

Hospice measured Vic’s SP02 levels today and it is between 84 and 88%.  I don’t think that is a good sign.  Lani, second eldest stepdaughter, phoned me last night and told me that she had chronic ill patients whose SP02 levels were as low as 70%.  Lani is a physiotherapist.  I felt better after our chat.

Vic is extremely tired.  She went out for coffee with her best friend, who, very recently, was diagnosed with breast cancer.  Vic is a compassionate and caring person and wanted to support her friend emotionally!  When she got home she had a lie down – for the rest of the day.

Tonight I helped her bath and wash her hair.  Poor poppet, she is so exhausted after her bath that she had to lie down and is taking a nap again.  Her hair is still damp but we will dry it later.  I hope she has a better night but I am not very optimistic.

Whilst I was rinsing Vic’s hair she said “Mommy what do people do that don’t have a family like mine”

“Oh sweetie, it must be very hard for them…”

“Sometimes I feel guilty because I take up so much time, money and attention from you.  I have taken up your entire life…” Vic said

“But sweetie, we love you!  What do you want us to do less for you to feel better?  Tell me and we will do it!”

We both laughed and the moment was over…

A while back I made a decision.  We do not have our own Hospice in our suburb.  We fall under the auspices of the Houghton (Johannesburg) and are literally the orphans of the system.  I am going to start a Hospice in Alberton.

This Hospice will focus on palliative care and will bring purpose to Vic’s suffering.  It will be a monument of her suffering and her compassionate nature.

 

An end of life discussion is one of the most important things to do right


Vic July 2007

This is a subject very dear to my heart.  Vic has been saved from the claws of death so many times in her little life.  I often lie in bed thinking how much physical pain and discomfort I have imposed on Vic by not allowing the doctors to not give up.  By cajoling her into living.  Twice this week I begged her to allow me to take her to hospital.  I promised earlier this year that I would respect her wishes. https://tersiaburger.com/2012/05/18/6-5-2012-3/   

My BFF, Gillian, sent me this email message:

Morning, you summed up “Where did the time go” perfectly. I cannot believe that 8 years have passed so quickly. Jon Daniel was 7 and Dr said he would not understand about death, but Jared 9 would be able to comprehend and mourn. You wonder what is better……. When they are little or older. Vic our miracle child has hung in there for her Angels. She can only be commended on her will power to add another day to their lives. She has no life. Except to smile with sad eyes every time she sees the boys for another day. As hard as it is to nurse your child, you are also spared Another day good bad or ugly. God has sent Vic to us give each one a lesson – not to complain or give up – the Power of the mind. Be grateful for what we have body mind and soul. Love you all with all my heart

What Gillian wrote in her mail is so true.  If I had allowed Vic to die earlier she would of been saved incredible amounts of raw, undiluted suffering and indignity!  A couple of posts ago I wanted to include a photo of Vic’s abdomen so people could understand what a person looks like after 81 abdominal surgeries.  I decided against it as it is too horrific to post.  But we have been blessed with some wonderful times.  The boys are now old enough to understand the extent of her suffering.  At this stage I am focused on her pain.  I remember when I was stressed that she was taking a couple of hundred milligrams of morphine a week.  Now it is a couple of hundred per day…

Reblogged from http://www.kevinmd.com/blog/2012/11/life-discussion-important.html by  on November 11th, 2012 in PHYSICIAN.  I read this on Andrew’s blog  on http://lymphomajourney.wordpress.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-to-do-right/

During an internal medicine residency, newly hatched doctors are responsible for some of the sickest patients in their teaching hospitals. This is because those patients often don’t have private doctors to attend them and are poor and sometimes self abusive, with the complex problems that go with smoking, drug and alcohol abuse and lack of regular medical care. These patients often present with their diseases late in game, when much must be done quickly.

There is little or no time to discuss end of life issues and so the assumption is made that these folks want “everything done” which includes machines and potions to support organs and bodily functions as they cease to work right. A scenario might look like this: 48 year old heroin abuser comes in with fever of 104 and symptoms of a stroke. He is admitted to the intensive care unit with low blood pressure, becomes gradually delirious and his heart rate increases, he is sedated for trying to crawl out of bed and run off, he becomes lethargic and is unable to breathe for himself, a central line is inserted and he is intubated and put on a ventilator, his blood pressure is supported with pressors and fluids, his oxygen level cannot be supported despite high ventilator settings. His kidneys cease to work and his heart goes into a rhythm that produces no blood pressure at all, he receives CPR with chest compressions, he is resuscitated, but barely alive, unable to communicate, obviously brain damaged beyond repair, placed on dialysis, eventually succumbs to overwhelming infection. We call this a “flail.”  It is horrifying and time consuming and ultimately a colossal waste of human and monetary resources. Repeated experiences of this type sour most of us on the idea of being resuscitated, so many doctors consider themselves “DNR (do not resuscitate).” We don’t want to be resuscitated ever, no matter what. There are some things that are worse than death.

Some resuscitations go well, though. A patient arrives in the emergency department with chest pain, develops an arrhythmia, has chest compressions briefly and electrical cardioversion and is conscious within minutes or hours. Some people briefly can’t support their own needs for respiration and require a few days of ventilation before being able to breathe adequately. Although they are weak and puny for awhile, they go home and live to tell the story, go back to work, raise families, climb mountains. These successes usually happen to people who were vital before they became really sick, the younger folks, without multiple or terminal illnesses to begin with.

When someone is admitted to the hospital, the physician responsible for their care (which is more and more often the hospitalist) determines, if possible what their wishes would be regarding life support should their breathing or heart stop. These discussions are very difficult if the patient has not thought about resuscitation and has not talked with a physician who knows them about options.

Often patients have reasonable hesitance to make potentially life determining decisions with a doctor who they don’t know and who doesn’t have time to talk with them about the implications of these decisions. In our heads we have a pretty good idea of which patients would do well should they require cardiopulmonary resuscitation, and we really want people whose chances of recovery are lousy to tell us that they are DNR. A DNR decision means that will not flail them. We will not get into a situation in which failure is likely. Should this patient become so sick that medicines, hydration and appropriate surgical procedures cannot save them, we will transition to a strategy that makes death peaceful and painless.

We rarely succeed in communicating this to patients and many who will not benefit from cardiopulmonary resuscitation say “Oh yes, doctor, I want everything done.” Some say this because their experiences are different from ours, they have seen doctor shows in which resuscitation was successful, they think that withholding resuscitation means getting substandard care, and sometimes they think that we just want to spare ourselves the trouble of saving them. And some of these concerns are valid. A patient who is “DNR” may not be watched as closely or treated as quickly if they decompensate. Some people with horrible prognoses do get better after being resuscitated, though this is pretty uncommon and usually involves a pretty significant decrement in quality of life.

Even though it is hard to establish trust with patients or their families in the context of being a hospitalist, I think it is one of the most important discussions to do right. It is everso tricky, though. Even asking the question can make a patient frightened or hostile. They wonder if we are asking this question because we secretly think they are going to die soon. They feel that the subject is too private to broach with a near stranger. They have never thought about it and don’t want to start now. They think that if they make a decision not to be resuscitated that their family members will think that they don’t love them.

But sometimes patients have been waiting, oh so patiently, for someone to bring up the subject and be willing to take enough time to answer the questions that they have been afraid to ask. I find that a discussion of resuscitation is best started after I learn about who a patient is and what they have done for a living and what they spend their time doing at home. What were they good at when they worked? Do they have kids or grandkids? Where do they live, do they travel, do art, take care of other people, have pets? It is hard or impossible to help a person navigate the end of life if I don’t know them.

Even though I am a bit biased against intensive and technological medical care, I love actually doing it. The tools of this trade are really clever and the immediacy of the practice is inspiring and brings people together. I have seen beautiful and compassionate intensive care, which makes patients and families feel valued. Nevertheless, there are always the unintentional and casual cruelties of disturbed sleep, needles, boredom, prickly heat, bowel indignities, physical pain and nausea. Death following chest compressions and electrical cardioversion is not peaceful.

When I sit with a person and hear that, no, they don’t want intensive care or cardiopulmonary resuscitation should their heart or lungs cease to work, and it is clear that resuscitation is not in their best interest, my heart feels lighter. I can focus more on what the patient values rather than what procedures are most likely to keep them alive for the longest time.

Janice Boughton is a physician who blogs at Why is American health care so expensive?

A night out of hell


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.

I asked her what I was doing wrong because sometimes, when I inject Vic and withdraw the needle, blood and/or the injection fluid spews out!  Sue explained that it because Vic’s collagen is so poor…. In layman’s terms; the flesh does not “seal” when I extract the needle….  That is why the subcutaneous syringe driver did not work and blood and whatever else spews out.

Vic is such as gentle, beautiful, caring human being.  Last night when I gave her an additional morphine injection, in desperation, she said “Mommy, what do poor people do who have no access to pain medication?

As a layman with access to Google I Googled “low oxygen saturation” and nearly had a heart attack of my own.

Basically, a saturation of 97% of the total amount of hemoglobin in the body is filled with oxygen molecules. A range of 96% to 100% is generally considered normal. Anything below 90% could quickly lead to life-threatening complications. The margin between “healthy” saturation levels (95-98%) and respiratory failure (usually 85-90%) is narrow. If oxyhemoglobin is low (below 90%) inadequate amounts of oxygen will reach body cells!

As a rule of thumb, respiratory failure usually occurs when saturation (SpO2) falls to 90%, although some patients with chronic respiratory disease may tolerate lower saturations. http://www.favoriteplus.com/oxygen-saturation.php

Every time your blood oxygen level falls below 92% saturation your body suffers drastic consequences Insufficient oxygen level is an immediately life threatening issue. http://www.heartfailuresolutions.com/34/oxygen/low-oxygen-levels-how-low-is-too-low-and-should-you-worry

By tomorrow afternoon we should start getting the results in from the blood tests and blood gases.  In the interim Sue has increased the amount of intravenous anti-nausea medication as well as the pain medication.  Dr Sue will make a call tomorrow whether Vic should go onto oxygen or not.

We have cancelled all our vacation plans.  We desperately wanted to take the boys away for a couple of days to give them a break, but it is not possible.  We will have the best Christmas ever.  A Christmas filled with love and togetherness….  Maybe our last.

 

 

 

 

Signposts for Dying


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!

 

 

Endometriosis, abdominal surgery, fistula and adhesions…..


Vic has had 81 abdominal surgeries in her life.  Vic’s first abdominal operation was at the age of 10 when she had her first batch of endometrioses surgically removed.

Endometriosis is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the peritoneum which lines the abdominal cavity. The uterine cavity is lined with endometrial cells, which are under the influence of female hormones.

Endometriosis is typically seen during the reproductive years and it has been estimated that endometriosis occurs in roughly 6–10% of women.

About 93%–100% of people undergoing abdominal or pelvic surgery will form adhesions, but luckily most do not have complications of the adhesions.  Adhesions may also result from infectious processes, such as pelvic inflammatory disease.

Abdominal adhesions are bands of fibrous scar tissue that form on organs in the abdomen, causing the organs to stick to one another or to the wall of the abdomen. Scar tissue most commonly develops after abdominal surgery, in which organs are handled by the surgical team and are shifted temporarily from their normal positions. It can also form in people who develop peritonitis, an infection that has spread to the membrane that covers the abdominal organs. Vic has developed peritonitis on numerous occasions.  Peritonitis usually occurs after appendicitis or another abdominal infection such as Vic first developed after her blotched surgery when her small bowel was perforated.  https://tersiaburger.com/2012/10/19/the-albatross/

There is no way to prevent adhesions. Abdominal adhesions can be treated, but they can be a recurring problem. Because surgery is both the cause and the treatment, the problem can keep returning. For example, when surgery is done to remove an intestinal obstruction caused by adhesions, adhesions form again and creates a new obstruction in 11% to 21% of cases.  http://www.intelihealth.com/IH/ihtPrint/WSIHW000/9339/9394.html?hide=t&k=basePrint#prognosis

Fibrous Bands of Adhesion – Bowel obstruction

In most patients, adhesions do not cause health problems. In a small number of people, like Vic, the fibrous bands of scar tissue block the intestines either completely or partially. This blockage is called a bowel obstruction, and it leads to death in about 5% of cases. Sometimes, an area of intestine that is affected by adhesions can keep becoming blocked then unblocked, causing symptoms to come and go. In about 10% of small-bowel obstructions, a portion of the bowel twists tightly around a band of adhesions. This cuts off the normal blood supply to the twisted bowel, causing what is called strangulation, and that section of bowel begins to die. When this emergency happens, the person must be taken to surgery immediately. The death rate is as high as 37% in people who develop strangulation.

Literally meters, of different parts of Vic’s intestines, has been removed.  Every time Vic had an obstruction she had surgery.  Vic has needed skin grafts to cover open wounds.  Vic developed numerous gastrointestinal fistulas.  Due to the extremely thin layer of skin covering her intestines the intestines have chaffed through.  Vic would lose up to 7 liters of feces  per day, through the fistula.

Now we cope with partial obstructions on a weekly basis.  We battle with poor absorption because Vic has lost critical parts of her intestines.  Vic will not have further surgery.  My child has been to hell and back.

No more surgery.

Ready for theater….again…..

 

 

 

I hate goodbyes!


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“Chloe, sweetie, wake up!  You have to go to school!”

“Nooooooo….I don’t want you to go!!” she wailed.

“We will see you again after Christmas….and Oupie is coming to see you next week!”

“Okay!”

For the last time in a long time I dressed my precious little Chloe.  I held her skinny little body and breathed in the smell of her hair.  Tears ran down my cheeks when I thought “How long before I can hold her again…”

I fed her… brushed her teeth and held her cup when she drank her tea.  Now I must tell you that my little Chloe is very independent and she only humoured me….

Georgia came and sat on my lap and said “Me want you to stay…”  She did not cry when I left.  I cried.

I hate goodbyes!  There are so many tears between “goodbye baby – see you soon” and “Hello my angel, I missed you”…

Tomorrow morning I am home.  I will see my beloved Vicky and all my grandchildren!  Jared has been posting on his BBM status how much he misses me… It is sad to leave but that is the way life is.  We can never have it all.

As much as we desire good health, joy, peace, financial security, love and laughter for us and our loved ones, it is impossible to achieve all of it!  We are a blessed family.  We have love, laughter, joy and peace.  Good health eludes us…  We cannot all be together and see one another on a regular basis.  Yet we are not separated from all the children and grandchildren.  And Skype is great!

I am surrounded by a wonderful family who care and love unconditionally!  I have an amazing husband who I adore.  I don’t have many friends but my few friends are loyal, supportive and caring.

Chloe loves treasure hunts. In May when we had a treasure hunt I hid Mr Maker surprises   Chloe promptly told me that the Pirates cheated.  They did not hide coins and Mr Maker presents don’t count!  So this time around I went armed with a map of my room and chocolate coins …. When she gets home from school today she will go to my room to double check that I have really left!  The postman delivered the Treasure Map this morning… I wish I was there to see her having fun…

Tomorrow I will go to gym with Jared and Jon-Daniel and I hope to see Henk and Yuri.  Maybe I will see Kari and Simone on Friday…

Saying Goodbye


Chloe and Georgia in their Oumie’s bed…
Time is closing in on us
Quicker than I would have wanted it to
I tried to make the moments last
But still they slip away
Day by dayHour by hour
Minute by minute
Our time together lessens
With each tick of the clock
The day,
The moment I have feared
For months now
Continues to draw closer
Soon I will be saying
Good-bye

Saying good-bye
To someone I love
With every inch of my soul
Watching you leave
As I stand crying
There is nothing more I can do
No more time I can savor
No more hugs to drag out
Nothing left
Except time
And distance
A long and lonely stretch of highway
That separates our love

 
Now it is summer
and I must wait
I count each day
until the moment.
Where I can see your face again
and feel your little arms wrapped around me
as we sleep
Together as one
Saying good-bye is never easy
but one must always remember
that good-bye
does not mean forever
and there will come a time
when again we can say
Hello.

Life is what life is….


We spent the entire day chilling!  We had a great day filled with laughter and joy.

Yuri and Chloe last summer

Life is so uncomplicated here.  There is laughter and joy.  There is discipline and tears.  There are toys on the floor and the smell of food in the air…  There are little hands that pick up and scribble.  Shrill voices that shriek “Oumie!!” when they are threatened with disciplinary action…  Hugs and kisses and lots of “I love you’s.”

Laughter and joy

In two days’ time I will return to South Africa.

Henk

I will leave behind my beautiful granddaughters, my son and his lovely wife.  I will take with me the memories of 10 carefree days of laughter and no responsibilities.  I will return to my structured and ordered life, the antiseptic smell of illness and medicine that permeates the air….

Yuri, Simone and Kari

Kari and Simone will come and spend the weekend.  Yuri, (who thinks I am the coolest gran in the world because I build armoured vehicles) will jump into my arms and ask where his cuzzies are; Jared and Jon-Daniel will volunteer to make me tea and tell me how quiet the house was without me; Henk will say “Hello Ouma… Did you have a good holiday?” in his deep voice; Vic will tear up and I will finally hear the truth about how she has been….

My son Danie, his wife Michaela and the 3 girls

In two sleeps time I shall return to my beautiful South African family and my life as I know it.

Vic and her boys

Life is what life is!

 

Jared and his little bro Jon-Daniel

 

UK Arrival


Mackenzie, Chloe and Georgia
Tears welled up in Vic’s eyes when I said goodbye.  “Have a wonderful time Mommy.  Give my love to my brother, Mac and the girls…”

“We will Skype every day angel”  I promised

“Bring our cuzzies back in your suitcase Oumie”  Jared said

And then we were on our way to the airport.  It took every ounce of my strength not to stay.  I kept seeing Vic’s tear filled eyes….

It was a wonderful flight.  I literally slept from Johannesburg to London.  I had a cup of tea at the airport and caught the coach to Coventry.  I slept from Heathrow to Coventry….

It was so great seeing Michaela again.  We had lots of tea and chatted non-stop.  Mackenzie, the one-year old baby cried and would not sit with me.  We pull faces at her and chat on Skype but that is so different to real life.  She will warm to her Oumie!

At 3pm we first collected Georgia from Nursery School.  She was quietly sitting on the carpet in her class and when she saw me she just mouthed “Oumie…”  We hugged and kissed and she held onto me as if to say “Don’t go…”

At 3.15pm Chloe’s classroom doors opened.  Chloe was sitting next to a little boy and did not notice me at first.  Her teacher called out her name and she got up to walk out of her classroom.  Her blue eyes connected with mine and disbelief spread over her little face.  She went from walking to flying!

We spent a wonderful afternoon playing and chatting.  I got to help with the girls bathing.  Mackenzie no longer cries when I come near her and her sister wanted to sleep in my bed with me….

I am such a blessed woman.  I am surrounded by love.

 

Tears are sacred…


There is a sacredness in tears.  They are not the mark of weakness, but of power.  They speak more eloquently than ten thousand tongues.  They are messengers of overwhelming grief…and unspeakable love.”

Washington Irving

 

Remission 15.10.2012


Vic could live like this.  We could live like this.  Please let this continue!  Today I pray that this is the case.  I pray for a miracle.  I pray that Vic is in remission. 

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.  http://en.wikipedia.org/wiki/Remission

Remission 15.10.2012.

Remission 15.10.2012


Vic and her boys!

On the 17th of September Vicky was accepted onto the Hospice program.  Dr Sue Walters, the Hospice doctor and Sr Ceza, Hospice Nursing Sister, thought she would die within days.  Vic was barely conscious  and too weak to walk.  Vic was breathing but had already ceased to live!

In two days’ time we celebrate Vic’s “One Month with Hospice” and I think she is getting stronger every day.  We still have bad days but her pain control is great!  Vic is reasonably mobile; she laughs and spends constructive time with the boys and the family!  She is sorting out photos and all sorts of things that she has neglected for months.  She is spending less time in bed.  She is sleeping less and eating more.

It is as if she has a new lease on life!

Could it be possible that the pain was killing her? Is it possible that the adhesions have stopped their devastating path of destruction?  That just maybe the sepsis has cleared?

Vic still needs assistance with basics.  Vic could live like this.  We could live like this.  Please let this continue!  Today I pray that this is the case.  I pray for a miracle.  I pray that Vic is in remission.

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.  http://en.wikipedia.org/wiki/Remission

“I am sorry Mommy!”


Vicky constantly says “sorry Mommy.”   She says “sorry Mommy” when she vomits, when she is in pain, when she is ill…

Then there is a flood of “thank you’s”….. Vic says “thank you” all the time!  It drives me mad! I don’t want her to apologize for being ill and I don’t want her to continuously thank me.

Vic’s situation, our situation as a family, is unfair, arbitrary, frustrating and so sad.  Vic is blameless, helpless, a victim of poor sick genes and doctor error.

I know that Vic is sad about her situation.  I know that Vic is sad for what the family is going through.  She is sad because she cannot be the mother she wants to be.  She is sad that she has a lonely, sad life devoid of partner love, physical love and friendships not based on pity.  She sad because she does not have a social life and neither do we as a family.   Vic is sad that she is dying in the prime of her life.  Vic is sad that she has achieved so little in her life (by her standards only).

We no longer have lunches with friends, outings or holidays.  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….

Thank you for memories


Jon-Daniel has had the best birthday ever!  Yesterday he left school early for extra time with his Mom, we had a fun family lunch and then there was a cake and tea last night at his Dad’s. 

Today it was his birthday party and Vic was well enough to enjoy it!  It was a glorious summer day; the pool was a sparkling blue, the trees and grass a vivid green….  The sun shone and sparkled on Vic’s hair as she stood watching the children play. 

Vic helped laying out the table, she bought helium balloons, she refused to sit or lie down.  She insisted on carrying Jon-Daniels birthday cake!  She started the singing.  She laughed and glowed with pride.  For a single day Vic looked just like a normal, healthy Mommy.  I could hear her heart crying…. “this is the last birthday I will have with my son”

I thank God for a glorious day and memories.  I thank God for granting Vic the joy of celebrating her baby boy’s 14th birthday.

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Happy birthday my precious son!
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Miracle Mom

 

 

I am taking a break from your blog


Jared and Vic lighting Jon-Daniel’s 13 Candles 12.10.2011

 

People have said “I am taking a break from your blog.  It is too difficult for me to read” or “Some days I just cannot read your blog”….. Listen up people on the 20th of July 2012 I blogged “When we first received Vic’s death sentence there was an absolute outpouring of love.  But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives.  My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace.  Well, this time you cannot hurt us because you are faceless.https://tersiaburger.com/2012/07/20/thank-you-god-20-7-2012/

My best friend says my blog is sad and I suppose it is.  The blog however mirrors my deepest feelings.  It is our journey and you (the royal you) don’t have to feel you are under an obligation to read my “sad” blog.

Well today I will however try and blog some happy moments.  Jon-Daniel, Vic’s youngest son, turns 14 on Friday the 12 th of October.  We are busy arranging his birthday party.  He wants a pool party but I don’t think the weather will co-operate!  Weather predictions are 80% chance of rain on Saturday!

Vic was born on one of the coldest days of the year.  I remember sitting hunched up in front of the fireplace saying “if ever I am going to have this baby it is going to be tonight!”  I finished work that day and was looking forward to my maternity leave.  I had weird little contractions at work but paid no attention to it.  My back was killing me!  But I had work to finish and the staff held a little “stork party” for me.  I lost my temper with someone at work and yelled at him!  I ate ice-cream in front of a heater and craved a milkshake!  It was such a busy day.

My case had not been packed as Vic was only due a month later….In true Vicky form she decided “enough is enough” and I went into labor that evening!  Vic is a “lingerer” and was born 27.5 hours after I went into labor.

When I was admitted my mother-in-law accompanied me.  She was plumpish with a youthful face.  The maternity staff thought she was being admitted…. I only gained 8 pounds (3.64 kilograms) and barely looked pregnant.  I still wore all my normal clothes.

When Vic was born she was so perfect!  Her father said “Oh, look she has my toes!”  She was heartbreakingly beautiful with a mop of black hair!

Some facts – Vic weighed in at 2.2 kilograms.  She was a mere 48 cm tall.  She was tiny but so strong and perfect!  She was the best “pooper” in the maternity ward.  Vic was a bottle baby and her preemies clothes were too big for her.

For the first two months of her life I was too scared to bath her.  My mom did.  Vic walked at 17 months but had her first tooth at 3 months.  She had her first fracture at 3 weeks – sucking her thumb!

Vic was diagnosed at 18 months with Osteogenesis Imperfecta.  By her 4th birthday she had fractured 40 bones.  Vic spoke her first words before she could sit and built basic wooden puzzles before her 1st birthday. Vic spoke Afrikaans and English fluently by the time she was 3.

At the time of diagnoses the doctors said she would not live to the age of 12.  Well she certainly showed them!

Every single birthday of Vic’s we have had lousy weather!  It was always the last cold before spring sets in on the 1st of September.

Vic does not have a good sense of humour.  Wait, let me rephrase that – Vic cannot tell a joke!  She loves a good laugh.  She has a beautiful smile that reaches her eyes.  Her dark brown eyes are truly the mirror to her soul.  Her eyes are now either clouded from morphine or pain.  Her eyes now “tear up” even when she is not crying.

Vicky is a people pleaser.  She will do everything in her power to make people happy.  She is also the most stubborn person the good Lord put on this earth.

Vic is a wonderful mother.  She loves her sons unconditionally.  Jared is her gentle giant.  He helps her mobilize and makes her coffee.  He will make her breakfast and lunch.    He is gentle and tender with his Mom.  He will carry her when she cannot walk.  He protects her…. He has a brilliant analytical mind.  He hates homework and studying.  He under achieves at school.  His room is not the tidiest in the world.  He is an accomplished guitarist.  Jared is generous and has an easy smile.  Jared is her eldest.

 

 

Jon-Daniel is the genius (he has my brain – hahaha).  He is a perfectionist and when he leaves for school his room is perfectly tidy.  He immediately starts homework when he gets home.  His lowest mark is for art – 78%.  He is an accomplished sportsman.  He only watches sport on TV and knows all the international soccer greats, tennis and cricket players.  He makes Vic laugh.  He fools around until she screeches with laughter.  He is angry because she is ill.  Even as a little boy he would cry to see Vic when she was in hospital.  Once he saw her he would start acting up – insisting that we leave!  He even saves airtime…. Jon-Daniel is her baby.

Vic loves her boys and her boys adore her.  I wish their lives were easier.  I wish I could save them the pain they live on a daily basis.