Stepping Stone Hospice

This week I truly realised that the Stepping Stone Hospice patients are “our” people. Our friends. They are not strangers. They are people we know from church, they are our neighbours, our friends; friends of friends… Our Hospice cares for our own. We are not “removed” from the community.

We however continually grieve.

Stepping Stone Hospice is just so different. We are not a group of detached, paid staff doing a job. This is a Hospice driven by the tears of its members. It understands the fear in the hearts of its dying and its survivors. We see our loved ones

We have lost our fear of death. We have not become immune to the tears of our community and friends. We truly live and experience “Ubuntu” every day.

A little old lady has shuffled into our offices with R150.00 ($15.00). She told us that when the interest rate went up she would be in a position to increase her monthly contribution to our “worthy cause”. How amazing would it be if everyone in our community contributed $15.00 a month?

I love spending time in our building. I feel close to Vic.

Our Hospice journey is a healing journey. We have been helped over the stepping stones…now it is our turn to take the hand of another and help them over the stepping stones. What an amazing privilege. All built upon our own tears and the deaths of our loved ones.

Together We Walk the Stepping Stones
by Barb Williams

Come, take my hand, the road is long.
We must travel by stepping stones.
No, you’re not alone. I’ve been there.
Don’t fear the darkness. I’ll be with you.

We must take one step at a time.
But remember, we may have to stop awhile.
It’s a long way to the other side
And there are many obstacles.

We have many stones to cross.
Some are bigger than others.
Shock, denial, and anger to start.
Then comes guilt, despair, and loneliness.

It’s a hard road to travel, but it must be done.
It’s the only way to reach the other side.

Come, slip your hand in mind.
What? Oh, yes, it’s strong.
I’ve held so many hands like yours.
Yes, mine was once small and weak like yours.

Once, you see, I had to take someone’s hand
In order to take the first step.
Oops! You’ve stumbled. Go ahead and cry.
Don’t be ashamed. I understand.

Let’s wait here awhile so that you can get your breath.
When you’re stronger, we’ll go on, one step at a time.
There’s no need to hurry.

Say, it’s nice to hear you laugh.
Yes, I agree, the memories you shared are good.
Look, we’re halfway there now.

I can see the other side.
It looks so warm and sunny.
On, have you noticed? We’re nearing the last stone
And you’re standing alone.
And look, your hand, you’ve let go of mine.
We’ve reached the other side.

But wait, look back, someone is standing there.
They are alone and want to cross the stepping stones.
I’d better go. They need my help.
What? Are you sure?
Why, yes, go ahead. I’ll wait.

You know the way.
You’ve been there.
Yes, I agree. It’s your turn, my friend . . .
To help someone else cross the stepping stones.

I don’t want to forget

I don’t know whether I ever posted this. I know that I was desperate to remember everything. Today I know I did not write enough, I did not take enough photos, I did not spend enough time talking to my child.

So I don’t forget…

Lucinda commented today “Again, I can’t add anything on to what others have said; I don’t know how you have the courage to make these posts.”

I sometimes wonder why do I blog? My whole being screams “so I won’t forget”. I want to remember every day, every spoken word, every unspoken word, every feverish touch. My friends have lifetimes ahead with their children…I don’t. They have many more Christmases and birthdays to look forward to. The chances are that their children will bury them… As a family we lived one day at a time. We were grateful for every morning when we wake up!

We have friends who lost their 17 year old son almost 17 years ago. I have not seen her in a couple of years. When I last saw her she said that it does not become easier with time. One just learns to cope with the pain and the loss. My friend had to walk away from her son. He was declared brain dead after a drunk driver drove into the car transporting him to a rugby match….

She said “I touched his big feet. I lay my head on his chest and I could hear his heart beat …. I walked away and his body was warm…” Steven’s heart beats on in another person’s chest. They, generously in all their pain, donated his organs and saved the life of another mother’s child..

Joan never had the opportunity to say “goodbye forever” to Steven. She said “Goodbye, have a good game. Love you!” Joan treasures the last hug, kiss, laugh… She holds onto it.

I want to hold onto every memory I possibly can. As hard as it is, I write so I will remember everything.

A lot of what I write I don’t post. It is too raw.

I hold onto Vic’s last words to me…”I love you Mommy”. I hold onto the memory of her beautiful smile, her brave battle, her devotion to her sons and family. I hold onto the purity of her heart and the kindness in her heart. I hold onto her gentle memories.

Never has the pain been as raw and the loss as real as now. For a couple of weeks I arrogantly thought that a scab was forming over the pain. Then it was cruelly plucked off.

In a weird way I am glad the scab was plucked off. I am glad that I am feeling that intense pain again. I am relieved that the tears are running over my cheeks blurring the words as I type.

I want to remember. I don’t ever want to forget. I want to remember my beautiful, precious angel child.

What is the difference between “dementia” and “Alzheimer’s disease”?

The heartbreaking description of a person with Alzheimer’s disease illustrates what a precious thing we have in the gift of memory. Memory gives us a past and enables us to plan for a future. We enjoy routines in our daily cycle and retrace our steps. Without memory, all we have is the present – no more. Everybody is a stranger. Calendars don’t make sense. Even mirrors are confusing, because there is somebody else here in the room.

Ecclesiastes 12:1 suggests that we should remember our Creator when we are young, because days of trouble will come. The implication is that we will forget even our God. Declining mental abilities are well-known symptoms of increasing age. In 1906 Dr. Alois Alzheimer, a German physician, did a brain autopsy on one of his elderly patients who had died after years of severe memory problems. He was surprised to find tangled nerve cells and dense deposits around them. But it wasn’t until the 1960s that science positively linked them to memory losses. After that it wasn’t long until intense research began to uncover some of the environmental and genetic causes of what is now commonly known as Alzheimer’s disease. http://www.wondermomsworld.com/tag/alzheimer%E2%80%99s-disease/

In a nutshell, dementia is a symptom, and AD is the cause of the symptom. When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living…..

Too often, patients and their family members are told by their doctors that the patient has been diagnosed with “a little bit of dementia.” They leave the doctor’s visit with a feeling of relief that at least they don’t have Alzheimer’s disease (AD).

There is great confusion about the difference between “dementia” and “Alzheimer’s disease.”

The confusion is felt on the part of patients, family members, the media, and even healthcare providers. This article provides information to reduce the confusion by defining and describing these two common and often poorly understood terms.

“Dementia” is a term that has replaced a more out-of-date word, “senility,” to refer to cognitive changes with advanced age.

Dementia includes a group of symptoms, the most prominent of which is memory difficulty with additional problems in at least one other area of cognitive functioning, including language, attention, problem solving, spatial skills, judgment, planning, or organization.

These cognitive problems are a noticeable change compared to the person’s cognitive functioning earlier in life and are severe enough to get in the way of normal daily living, such as social and occupational activities.

A good analogy to the term dementia is “fever.”

Fever refers to an elevated temperature, indicating that a person is sick. But it does not give any information about what is causing the sickness. In the same way, dementia means that there is something wrong with a person’s brain, but it does not provide any information about what is causing the memory or cognitive difficulties. Dementia is not a disease; it is the clinical presentation or symptoms of a disease.

There are many possible causes of dementia. Some causes are reversible, such as certain thyroid conditions or vitamin deficiencies. If these underlying problems are identified and treated, then the dementia reverses and the person can return to normal functioning.

However, most causes of dementia are not reversible. Rather, they are degenerative diseases of the brain that get worse over time. The most common cause of dementia is AD, accounting for as many as 70-80% of all cases of dementia.

__________________________

Approximately 5.3 million Americans currently live with AD.

As people get older, the prevalence of AD increases, with approximately 50% of people age 85 and older having the disease. It is important to note, however, that although AD is extremely common in later years of life, it is not part of normal aging. For that matter, dementia is not part of normal aging.

If someone has dementia (due to whatever underlying cause), it represents an important problem in need of appropriate diagnosis and treatment by a well-trained healthcare provider who specializes in degenerative diseases.

In a nutshell, dementia is a symptom, and Alzheimer’s Disease is the cause of the symptom.

When someone is told they have dementia, it means that they have significant memory problems as well as other cognitive difficulties, and that these problems are severe enough to get in the way of daily living.

Most of the time, dementia is caused by the specific brain disease, AD.

However, some uncommon degenerative causes of dementia include vascular dementia (also referred to as multi-infarct dementia), frontotemporal dementia, Lewy Body disease, and chronic traumatic encephalopathy.

Contrary to what some people may think, dementia is not a less severe problem, with AD being a more severe problem.

There is not a continuum with dementia on one side and AD at the extreme.

Rather, there can be early or mild stages of AD, which then progress to moderate and severe stages of the disease.

One reason for the confusion about dementia and AD is that it is not possible to diagnose AD with 100% accuracy while someone is alive. Rather, AD can only truly be diagnosed after death, upon autopsy when the brain tissue is carefully examined by a specialized doctor referred to as a neuropathologist.

During life, a patient can be diagnosed with “probable AD.” This term is used by doctors and researchers to indicate that, based on the person’s symptoms, the course of the symptoms, and the results of various tests, it is very likely that the person will show pathological features of AD when the brain tissue is examined following death.

In specialty memory clinics and research programs, such as the BU ADC, the accuracy of a probable AD diagnosis can be excellent. And with the results of exciting new research, such as that being conducted at the BU ADC, the accuracy of AD diagnosis during life is getting better and better.http://www.alzheimersreadingroom.com/2010/06/whats-difference-between-alzheimers-and.html

This contribution was made by Dr. Robert Stern, Director of the BU ADC Clinical Core. Source BU ADC Bulletin

The boys grief …

He is six-foot tall and wears a number 11 shoe. He has a beautiful open face, perfect teeth and a brilliant smile. He is very bright, a gifted sportsman, he is the “silent” type. He is Vic’s youngest son.

Last night he received an award at the school’s prize giving. His aggregate for the year 84.7% with 8 distinctions.

This is the most difficult year of his life. He lost his mom in the beginning of the academic year.

Jared is the perfect older brother. He is fiercely protective of his younger brother. Jared is gentle and caring. He has a white soul…

On the surface the boys are coping well. They are “getting on” with their lives.

Thank goodness for social media…It gives me an insight into what is happening behind their stoic appearances.

Jon-Daniel’s WhatsApp status is “Live until you die.” That is the example his Mom set…

Jared posted on Facebook on the 18^th of September “Can’t believe that it has already been 8 months… Miss you mommy… It feels like a lifetime already… Love you mom ♡ always in our heart♥ forever in our memories…♡“

On the 18^th of September Jon-Daniel posted: “How? I ask myself.. It already been 8 months without the greatest Mommy in the world! Time has flown since January, but the memories have stayed. And they will always stay, along with that special place in my heart that is only for MY MOMMY! Love you always Mom, miss you stax!”

On the 26^th of September Jared posted on Facebook “Missing you mommy… you were always there for a laugh♡“

The day of Stepping Stone Hospices’ official opening Jon-Daniel posted “Stepping Stone Hospice was officially opened this evening. Amazing to see 1 person’s dream can turn into something so big! And so amazing how much people will do for somebody they don’t know. Thank you to all that attended!”

He cried in the doorway of the Vicky Bruce Room

On the 11^th of October he posted on Vic’s Facebook page “Mommy, I miss you! When are you coming home?”

I am helpless in taking the children’s pain away. Their pain and grief is still so raw and deep.

The stress started years before Vic died. The boys grew up knowing that their Mommy was ill and in a lot of pain. They grew up living with Vic’s imminent death and dreadful suffering.

Teenagers appear to feel grief more intensely than adults, especially if one of their parents has died. The Adolescent Life Change Event Scale (ALCES), which mental-health specialists use to help quantify the events that are the most stress-inducing in teenagers, ranks a parent’s death as the number- one cause of adolescent stress. Second is the death of a brother or sister, followed by the death of a friend.

Teenagers are embarrassed by displays of grief and struggle to express their emotions. The boys seldom talk about their grief. They will tell me when the other brother is having a rough day….

Jared was very concerned about how his little brother would cope with his first birthday without his Mom. He went to great measures to ensure that his little brother was “protected” from the grief on his birthday. He blew up 40 balloons so Jon-Daniel would wake up to “fun”. (Vic always had lots of balloons on the boys birthdays.)

The firsts are coming fast and furious now. The first birthdays, prize giving’s, confirmations without their Mommy… Jared and my birthdays, Christmas and New Year is looming…

I love the boys with every fibre in my body. I hate that they occasionally walk in on me when I am crying. I hate that I cannot make their pain better. I hate that I am so helpless.

I wish I had died and not Vic. I wish that I could change places with my child. I wish I could rip the heartache out of my grandsons’ lives and hearts. I wish I could protect them.

I wish I could shake the cold world out there and make them realise how much pain the boys are in….

Please pray for Vic’s boys. Pray that they will heal. Pray that God will hold and protect them. Pray that they will learn to be happy again.

I pray that one day I will hear their happy, uncontrolled laughter echo through the house again.

https://tersiaburger.com/2013/03/20/i-love-you-angel-child/

https://tersiaburger.com/2013/09/18/the-shadow-of-grief/

https://tersiaburger.com/2013/09/11/your-children-are-not-your-children/

https://tersiaburger.com/2013/06/07/mommys-dream-is-coming-true/

A Poem About a Mother’s Love for Her Very Sick Child

I posted this when Vic’s death was a future event. I did not realise how dreadful the loss would be. How devastating the longing for my child. How severe the physical heartache would be… Today I would give everything I own just to hug and hold Vic one more time.

I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.

Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.

If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.

I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.

I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.

I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.

You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.

God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.

God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.

God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.

http://authspot.com/poetry/a-poem-about-a-mothers-love-for-her-very-sick-child/?fb_action_ids=3587335596077&fb_action_types=og.likes&fb_source=timeline_og

Happy birthday angel boy

Today Vic’s youngest son turned 15. It is his first birthday without his Mommy. As a family we have dreaded it.

Vic was a birthday person. Banners all over the house, balloons, singing, speeches and lots of laughter. Vic loved parties especially when they were her sons’ birthday parties.

We cannot do what she did. It would not be right to do what she did. We need to create new traditions around birthdays.

It is a day filled with pride and heartbreak. I know many people will think and say that Vic is smiling down from Heaven on her baby boy today. I know she is weeping. Vic never wanted to die. She so desperately wanted to live. She wanted to be at her sons’ birthdays, tell them how proud she is of them…Vic wanted to mother her boys herself…

The day has come and gone. We all hid our feelings so well. We laughed, smiled and sang….

Tonight when I get into bed I will weep with my child for my grandson…

10th birthday

Vic wrapping Jon-Daniel's gift — Vic wrapping Jon-Daniel’s gift

Jared smearing cream all over the birthday boy's face... — Jared smearing cream all over the birthday boy’s face…

Deathbed promises kept and broken

During the month of August I again stood next to a deathbed. It was next to the deathbed of one of our patients.

I was touched by the absolute outpouring of love from the family to the patient. I have seen it at almost every single deathbed I have stood next to…. The second death I ever witnessed was weeks before my mother-in-law died. My Mother-in-Law was in a hospital. The lady opposite her was dying and moved into a dying-room. I was allowed to sit with her. I prayed for her and tried to comfort her. I spoke to her almost non-stop for 11 hours. In the evening her husband came to visit. He was not told that his wife was dying by the hospital staff…

“What is wrong with my wife?” he asked

“She is very ill” I said

“When will she come home?” she asked.

“You must speak to the staff” I said

“They say nothing” he said

“Your wife is dying… I am so sorry.”

I know it was not my place to tell this poor man that his wife was dying. But, if I hadn’t he would have had to live with the fact that hours after visiting hours were over, she died… He got to say goodbye.

I sat with the woman until she died. She was petrified of death. I could see that they were indigent people. Poorer than poor.

She knew she was dying. She was desperately trying to stay alive. Trying to console and calm her I asked her whether she was scared. She nodded. I asked her whether she was worried about something. Again she nodded. I asked her whether she was worried about her children. She again nodded.

In the heat of the moment I promised her I would help her husband look after her children… I made a deathbed promise.

The next day I tried to get her family’s contact details from the hospital. They refused to give it to me.

I have had to live with the fact that I promised a dying woman that I would take care of her children and that I broke that promise.

Extravagant promises to dying loved ones often pose an ethical conflict, defined as when opposing acts each fulfil an ethical value, but neither can achieve both. The situation also arises when one is tempted to lie to dying friends and loved ones out of kindness. A mother and daughter are involved in a fatal car accident; the daughter is dead, the mother is dying. “Is our daughter all right?” the fading mother asks her husband.

In such a case, it is reasonable and ethical to conclude that the kind answer, “Yes,” is more ethical than the truthful answer, “No.” A promise to a dying loved one may be an exception to the usual rule that it is unethical to make a promise one cannot or will not fulfil.

Often ridiculous and selfish promises are coerced from the loved ones standing next to a death bed. When we stand there we promise freely…we want to give the dying person that final peace of mind.

A classic example of a deathbed promise made in good faith is depicted in the black comedy “Where’s Poppa?” In this movie, the son promises his father, he would never place his senile mother in a home… At the time it was a reasonable promise but becomes increasingly more difficult to keep as the mother becomes more demented and senile. The vicious woman destroys every aspect of his life….

“Promises openly and freely made on the initiative of a dying individual’s loved one are true commitments. Promises coerced by a dying friend or relative and made out of kindness or guilt, on the other hand, should be re-evaluated at a less emotion-charged time. Both varieties of death-bed promises, however, create ethical obligations. They just can’t be as strong as the obligations created by promises to the living.”

I have stuck to every promise I made Vic. Many of the promises were heartbreakingly difficult to keep. Others were easy.

On Wednesday the 9^th of October 2013 we had the official opening of Stepping Stone Hospice’s building.

It is one promise I was able to keep.

The entrance to Stepping Stone Hospice being blessed

The boys outside the Vicky Bruce Dignity Room

The Anniversary

There are times in the life of a terminally ill person that death is no longer the enemy but rather a friend. Vic too surpassed all anniversaries and eventually I though she was invincible. But with invincibility comes pain, indignity, despair, depression… Thinking of you Mike in your brave journey.

Your children are not your children…

Of course I have read the words of Khalil Gibran many times. Yet this morning I read these words with and through different eyes. I read the blog post of one of my favourite bloggers –

http://deodatusblog.wordpress.com/2013/09/10/your-children-are-not-your-children-they-are-sons-and-daughters-of-lifes-longing-for-itself-says-khalil-gibran/ and was overwhelmed with the exquisite words of guidance contained in this beautiful poem.

Read this with me.

“Your children are not your children.“

“Your children are not your children.
They are sons and daughters of Life’s longing for itself.
They come through you but not from you.
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the make upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness.
For even as He loves the arrow that flies, so He also loves the bow that is stable.” – Khalil Gibran

As a mother who carried a precious baby in her womb for almost 9 months my eyes lingered on the words “They come through you but not from you.” Vic came from me? An umbilical cord that was never severed, bound us together from the first second she were conceived. Even though death took my child from me the umbilical cord of love that bounds us cannot be severed. My love for Vic supersedes the bonds of death.

So no, I don’t agree with Gibran although I understand what he is saying. In this case I prefer literally translating his words…

And though they are with you yet they belong not to you. You may give them your love but not your thoughts, For they have their own thoughts..

How poignantly true these words are. As a parent it was horrible watching Vic make mistakes…knowing that her actions and decisions would lead to heartache and tears. How I wished that she would see things my way! My way would have been the safe way. Vic would have been spared rivers of tears and mountains of heartache. My way would have deprived her of great joy and happiness. As a mother I picked up pieces, held her and loved her. I could not protect her. Vic had her own thoughts!

You may house their bodies but not their souls, For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.

I housed Vic’s little body. The moment of greatest sadness in my life was when Vic’s soul left her body. I was grateful that her suffering was over but devastated that our journey as mother and daughter was over. I knew that she instantly became an elevated being removed from the hardship and indignity that she suffered on earth. I knew that she would never be prod, cut, hurt or be humiliated again. As her mother, I bathed her and dressed her one last time, as I did when she was born. No other prying, clinical hands would touch her again. I was beyond grief knowing that I would never be able to talk to her again. I would never hold her again. I would never hear her say “Love you Mommy” again. My soul mate, my life was gone. My child’s soul now dwells in the house of tomorrow that I cannot visit or even comprehend.

You may strive to be like them, but seek not to make them like you. For life goes not backward nor tarries with yesterday. For life goes not backward nor tarries with yesterday.

I never wanted Vic to be like me. Vic was strong, brave, loved, cherished, admired, gentle, loving, forgiving and vulnerable. I am tough, logical and emotionally distant. I allow very few people close to me and, if they betray my love and trust, I cut them out of my life. As a little girl, Vic said to me “I don’t want to be like you Mommy. I just want to be a normal mummy.” Vic was the one who taught me patience, unconditional love, forgiveness and to take a chance on life and love. Vic lived every second of her life. She did not fear emotion. She did not fear love and trust. I pray that her sons will remember these qualities their mother possessed. I pray that they will be more like her than me. I did however love Vic first and everyone else second…

You are the bows from which your children as living arrows are sent forth. The archer sees the make upon the path of the infinite, and He bends you with His might that His arrows may go swift and far. Let your bending in the archer’s hand be for gladness. For even as He loves the arrow that flies, so He also loves the bow that is stable.”

I was the bow that send my precious girl-child forth.

The boys do archery as an extracariculum activity. To be a good archer you need consistent anchor points: An anchor point is the place on your face where you pull the string back to consistently. This anchor point should be exactly the same all the time for a consistent grouping of shots. My parents taught me, by example, the importance consistency in values, discipline and love.

An archers grip on the bow handle should be lax and comfortable. My first instinct as a parent was “to grip the bow hard to stabilize it”. My parents taught me to be a comfortable parent. I did my best. I could not do more. No amount of tightening the grip on Vic, her discipline or my love and caring for her would have made me a better parent. My grip was lax and comfortable. My child was an amazing example to the world.

Whether you’re doing target archery, 3D archery, or bow hunting, it is vital to concentrate and focus on one precise spot that you want to hit. As a parent is was difficult to stay focused all the time. Lots of things “get in the way” of parenting. A new love, work, own dreams and ambitions…Yet I gave birth to my incredible baby girl and I knew I had to remain focused. Vic had to come first. She did not chose to be born. I chose to give birth to her.

Archers are told that to be relaxed whilst aiming, is one of the great secrets to success… As a parent it was almost impossible to relax. I spent my child’s life trying to keep her alive. If I relaxed I know it could have led to her death. When your child is sickly, you are overprotective… Today I wish I had relaxed more. I wish I had spent more time discussing things that, mattered to Vic than the number and colour of her bowel movements and vomiting sessions. I wish I had relaxed about her smoking. Smoking did not kill her. Doctors did.

“At the heart of it, mastery is practice. Mastery is staying on the path.” With parenting we practice as we go. We don’t ever stop or give up. I wish that we had more gladness in our lives and less sorrow and pain.

What I am certain of is that I was a stable bow. I was unwavering in my love and commitment to Vic and now her boys. The Great Archer held us in His great Hands.

I found this beautiful poem on http://warrenlgdemills.com/2013/05/11/umbilical-cords-a-mothers-day-poem/. Warren is an amazing poet and I have found much solace in his words.

Umbilical Cords – A Mother’s Day Poem
Posted: May 11, 2013 in Affections
Tags: love, mother’s day, poems, Poetry 1

Umbilical cords
Are but metaphors
To represent the eternal
Connection between mother
And child.

Though that cord may be severed
That love supersedes the bonds of death.
For they are the cords of life!

When a child is born
so is a mother.
It is the graduation of a girl
To a woman.
The transition from
Woman to mother.
The ascension of adult
To goddess, creator of life.

Oh great goddess,
Would you understand
The power within you?
Would you fathom
the role you play
On the stage of life?

By your love
Is a great man groomed.
By your neglect
is his future family doomed.
By your touch
Is intimacy first understood.
By your hand
Does he separate bad from good.

Oh great goddess,
For every good child
Reared from your breast
There is a star in the cosmos
To be named after you.

Though that cord was cut
You replaced it with one unseen
Your care, patience for years,
To provide the world with one more
Decent young man to make this world
A better place.

-WLGDM

Extra tablets for your birthday…

A year ago I posted this…

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

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

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

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

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

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

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

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

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

Everything else has been said.

200 days

Today we lit candles in remembrance of Vic dying 200 days ago. My mind keeps crying “No! It is not true!” The void in my heart and life shrieks “Yes, it is!”

I met with a new Hospice patient today. She is in her early 60’s, petite, bright, friendly, positive and so unbelievably brave! She is also in denial and dying.

“I believe I will wake up one morning and I will be healed!” she said

Her skin has discoloured from the chemo, her eyes are turmeric yellow and her belly is very extended. Her feet and legs are dreadfully swollen. I believe that she is close to death. Yet this incredible woman is determined to go to the office from the 12^th of August until the 27^th of August as her replacement is on leave then…. I doubt that she will live that long!

I sat there and it was déjà vu… It was as if I was listening to Vic planning next week, next month and next year…. I heard her husband encouraging her to write letters, finalising her will. I shared with them how Vic had labeled every piece of her jewellery, given strict instructions on what had to happen to her possessions, planned her own funeral…

“Am I correct when I say that I hear you saying your child died?” the patient asked.

“Yes” I said. “200 days ago today”

“I cannot believe that you can talk about your child’s death! You are smiling and look so normal” she said. “When our son died we could not talk about it. We cried all the time…”

“Death is not the enemy. I prayed for my child to die…” I said.

“It is okay to cry” they said

“I cry every day” I said

I am alive

I am having a wonderful visit in England with my UK grandchildren and kids. The house is filled with the patter of little feet and shrieks of laughter and despair. Toys lie scattered on the floor and little arms and legs curl around their Oumie. It is a happy home, and I am fresh meat…

“Oumie, please can we jump on the trampoline?”

I have spent two days jumping on a trampoline…Thank God it rained today!!!

I have been consumed with the feeling of “life” in the household. Life, joy, movement…easy laughter and sibling rivalry. Everything that poor Vic never really experienced.

How desperately she wanted to live. How desperately she craved a normal life. How desperately she craved to LIVE! How desperately we wanted her to live.

We never have enough time. We always want more. Vic wanted more time. On the 24^th of September, last year, when the Hospice doctor came in for Vic’s evaluation, Vic said “I thought I had more time…” https://tersiaburger.com/2012/09/24/mommy-i-thought-i-had-more-time/

Six days before her death she cried and said she wanted to live. “If only I could live for another year…”

“How little we know of what there is to know. I wish that I were going to live a long time instead of going to die today because I have learned much about life in these four days; more, I think than in all other time. I’d like to be an old man to really know. I wonder if you keep on learning or if there is only a certain amount each man can understand. I thought I knew so many things that I know nothing of. I wish there was more time.” –Ernest Hemingway.

I am wordless.

I know that I am still numb.

I am sad.

I am happy.

I am alive.

I wish I wasn’t…

I don’t want to ever leave my loved ones – as my child did not want to…..

Life is so unfair!!!!

From the diary of my precious child…

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

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

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

Goodbye
I turn my head and look towards death now.
Feeling my way through the tunnel with the space of
emptiness and quiet.
The shimmering silence that awaits me.
This is my direction now; inward to the green pastures…
The cares of the world concern me no longer.
I have completed this life. My work is done, my
children grown.
My loved ones are well on their hero’s journey. (original text – My husband is well on his…)
I have loved much and well…
Those I leave behind, I love.
I hope I will remain in their hearts as they will
in mine…
Thank you for taking such good care of me…
And all of you who have been my friends, thank you
for teaching me about love.
Karen Vervaet

I am Vic’s mother!

Child-loss is a black hole of grief and sorrow in which every emotion is compressed and compounded. It is an inescapable vortex.

Vic was the centre of my emotional cosmos. My world revolved around my precious child. Vic was my past, my present and my future. When she died it felt as if my life ended.

For the first time in 38 years I cried. I truly cried and called to the heavens. It was as if 38 years of pent up fear, anguish and stress was released. I screamed, I sobbed, I wept… Did you know that there is a difference between weeping and sobbing? I clung to my child. I stroked her hair. I washed her little body and dressed her in her favourite pyjamas. I sprayed her favourite perfume on her.

Grief is a strange journey.

When I embarked on the Journey of Mourning it was a strange road. I had lost people I love dearly before. My mom, my dad, BFF’s, colleagues and family had died. Of course grandparents too… But I had never lost a child. This is a road I had never travelled before. I did not only lose my precious child but I also lost the person I was.

Within a millisecond I ceased to be a mother. Wait – I became a “bereaved mother.” The hope I had clung to for 36.5 years was lost! The fight in me was gone.

The second my child’s soul left her body my heart shattered into a million pieces.

The hardest thing I had to do in my life was say goodbye to my child; listening to her breathing getting weaker and weaker…. knowing that her last breath was so close.

Then I thought nothing would match my pain watching my precious baby leave our home for the last time in a plastic sheet on a gurney until I had to stand and watch the hearse drive away with my precious, precious child lying in a cold hard coffin – her destination a crematorium!

No matter how prepared I thought I was for Vic’s death – I wasn’t! People seem to think I should be grateful Vic is dead. Just as people did not want to listen to me talking about Vic’s terrible suffering they now don’t want me to talk about Vic after she died. They ask you how you are doing hoping you won’t be honest and answer…

It is almost surreal to see that the world has carried on with its business; that the heavens are unchanged; that life has continued. I look at myself and I think that people that don’t know me would never guess that my life ended 6 months ago… People pat me on the back and say “You are so strong…”

We are nearing Vic’s 6 month anniversary and I have learnt to breathe again. I have learnt to stay strong for the boys. My life will and must mirror Vic’s strength and courage. Her dream of a Hospice will continue to live on in me…Her goodness will continue to spread to the community and the world!

I raised Vic to be strong, courageous, and brave. Vic taught her sons that she is their mother not their excuse…

I am Vic’s mother – she is my reason; not my excuse!

Always the lady

Exactly one year ago Vic had a Brazilian Blow-dry. This is what I posted then…

Today I took Vic to the hairdresser and she had a Brazilian blow-dry treatment. Now, for those of you who are as ignorant as I was, this is a “hair straightening” process. Four hours!!

Shame Vic was sleeping in the chair…poor baby! She is exhausted but it will make her life so much easier for many months ahead. Vic will not wash and leave her hair – it has to be sleek…Now with this Brazilian blow-dry thing we can wash her hair and leave it! Bliss!!

I never saw my late Mom not immaculately dressed with her hair beautifully done. No matter how ill she was, Mom went to the hairdresser three times a week. Her nails were always immaculate and Mom would get very annoyed with me if I wasn’t wearing make-up and had my hair in a ponytail. “Always the lady” was her motto. As it is Vic’s. I find it absolutely amazing that she insists on getting dressed most days. Well, certainly before the boys get home from school. She does not want the boys to see her in pyjamas. When we wash her hair it must be blow dried…She will not scrunch it or put it up in a ponytail, plait or pin…Vic’s hair has to be sleek…No matter how ill she is.

Her little body is so swollen from the cortisone. Her face looks like a little chipmunk’s! It happens from time to time. What is worrying is that Vic’s blood pressure is steadily increasing. Addison’s symptoms include low blood pressure…so why is Vic all of a sudden developing high blood pressure? And Madam will not see a doctor! What to do?

Vic does look so beautiful after her hairdressing marathon. She is passed out and I know it will take her a week to recover from this outing. But, it is well worth it!

These are the words Jared wrote for Vic’s funeral letter….

Dear Mommy…

Words could never explain what you mean to me…

It always meant so much to me that no matter how bad you felt or how sick you were, you always went out of your way to do anything and everything you could for us… Always going out of your way to make everyone’s life easier especially mine…

You were always my hero… No matter how sick you were every morning you woke up and got dressed. Even if you didn’t do anything you always looked your best…

I love you so much mommy… You made such an impact on everyone’s life that you will never be forgotten…you will forever live in our memories as the bravest woman and best Mommy of all time…

No one will ever be able to replace you…

Jared

Jared and his Mommy 1.1.2013

Always the lady…

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Jon-Daniel’s WhatsApp status is “Live until you die.” That is the example his Mom set…

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