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!

IMG_3456

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… Jon-Daniel(1)

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

All Rights Reserved. Property of Warren L.G De Mills. Copyright @ 2013.

Jared♡ĶįƦƧƳ.Ș♡(1)

I miss being Mommy


My beautiful Vic

My beautiful Vic

I so desperately need to articulate my pain and yet I cannot.  Words are inadequate and empty.  There are not enough adjectives in the english language to describe my indescribable pain and longing for my precious child.  Yet, my cyberfriend Judy has articulated my emotions pretty accurately.  So in the absence of my own words I am posting Judy’s email to me.

Thank you Judy.  Your words do help.  What a horrible area to be experienced in – the world of grief….  

Judy is right.  I just want my child to be with me.  I miss her more than I ever imagined I would.  The void is like a never-ending well of despair.  I miss being a grandmother and I miss being a Mommy….I am only a back-up mother now.  An empty vessel.

Thank you all for your love and support.

Tersia,

I am not telling you that I know how you feel. I cannot know. Grief was so isolating and lonely that even when I had people caring about me, I remember my mind screaming that I would give anything to have my child back! It was such a horror. I could not concentrate upon anything. I could not read a single paragraph and know what I had just read. I could not sleep. I did not want to be alive anymore.
 
You are so supported – I see message after message flying across cyberspace to hug you. I see a lot of messages telling you to stay strong. I think what is typical for being a caregiver is the constant suppression of emotion. You were Vic’s caregiver for decades. You learned how it was important for you to be strong.  I see how concerned you are about staying strong for everyone around you. I remember when I decided I wasn’t able to be strong anymore.
 
So staying strong might pose a conflict for you. At some point, all of your emotions might start to surface. It is terrifying. I was tired of hearing how my child’s suffering was over. Inside I screamed, “Why did my child ever have to suffer!!?” That was the beginning of my feeling very angry. Anger was a difficult place to be in, but it is a stage of grief. Men and woman grieve very differently, too. Navigating that was more than I could handle, so I retreated to be with other grieving mothers. 
 
I’m wondering if my words are helpful. I guess I just want you to know that you are on a road that you will survive. You know that. Life will never be the same. You know that. Some people cannot enter the doorway of grief. They succumb to it. You have entered the doorway and are plunging ahead into the darkness. It hurts so much!
 
Love, Judy

 

“More than you know”


18052009099
I have received a couple of very touching emails from Judy Unger.  I am an avid follower of Judy’s blog http://myjourneysinsight.com  I have sensed from Judy’s blogs that she has suffered deeply.  I have however always avoided reading her posts on her son Jason’s death.  Somehow it is too close to home.
This week I received another caring email from Judy.  Tonight I read Judy’s post on her Jason-Mark’s journey.   http://myjourneysinsight.com/category/death-of-my-child-jasons-story/.
I wept for Judy.
With fresh, tearfilled eyes, I reread my email.  I listened to Judy’s beautiful song and went to lay with my child.  I held her gently and told her how much I love her.  She is having a bad day and is feeling very frail.
Once again I share this remarkable woman’s caring email with you.  Her words are flattering and the email personal.  Yet I am compelled to share this email…  I hope that you will listen to her beautiful song.  Thank you dear Judy for baring your soul and showing your compassion.  Thank you for reaching out to me!
I am always thinking of you at a time where you are putting one foot in front of the other. There is probably no word in the dictionary to express your exhaustion. Yet, you always find time to respond to every person’s comment with grace and kindness. 

I loved your last post about tears. How beautiful that you could appreciate tears of joy, and not only of suffering at a time like this. 

I have been deeply touched that you’ve shared my songs and words on your blog. It is unbelievable to me how in the short time I’ve know you, you’ve allowed me to help. I certainly hoped and wished I could. My own life has been enriched knowing that I was able to be there for you and Vic. The lovely comments by people who read your blog have also brought me to tears. 

Since you have been Vic’s caregiver, you already know her absence will leave you with a deep abyss. It is so hard to have that devotion stop suddenly, because you will be going from plodding in exhaustion into nothingness. It is shocking because for so long, keeping Vic going has been your major purpose in life. 

Now I want to share about another song that has helped me. It is my song named “More Than You Know.” 

There are many levels to this song similarly to “Set You Free.” The main theme is of letting go. My song was written about friendship, but I revised it after my son Jason died. The lines that I find most applicable to losing my child was: 

“I just can’t find the words to say how it felt when you went away”

With that line I am saying that nothing can possibly express the anguish of grief. 

“I thought that you were mine.”

I believed that my child belonged to me. He was my purpose and I took care of him until he died. I could not accept his death for a very long time. That was why letting go was so hard. 

Your own eloquent words acknowledge acceptance of Vic’s death. You are preparing yourself to let her go. 

But there is no way to do that adequately. 

I share with you my lyrics and song now. Since you have shared my messages, I want to provide a link here to my story about Jason. It helps to explain my songs and why I want to give you hope as you enter the darkness of grief. Your love for Vic will never end, nor her love for you. 

Please know that you (or anyone grieving) can write to me any time. I am sensitive to grief in all forms, but because I am also a bereaved parent, I am especially sad when a child dies. 

Link to Jason’s Story – myjourneysinsight.com

Here is my latest song to help you: MORE THAN YOU KNOW-Copyright 2010 by Judy Unger

MORE THAN YOU KNOW

You gave me your hand; you’d always understand
No one else could see all the change you’d seen in me
You gave me so much; within a single touch
I searched for a smile; you brought mine back for a while
I just can’t find the words to say
How it felt when you went away
All my life, I hoped you would stay
And when you left, I let you go
But I still love you, more than you know
 I still love you
 
You brought me sunshine; I thought that you were mine
How can I believe? When the warmth of you did leave
You gave me everything that made me want to sing
How could I have guessed that our time would be my best?
I just can’t find the words to say
How it felt when you went away
All my life, I hoped you would stay
And when you left, I let you go
But I still love you, more than you know
 I still love you
I echo you words.

The right to live with dignity


Live_Life_to_the_Fullest_by_HM_Photography

I just read two very insightful posts that Andrew of http://lymphomajourney.wordpress.com posted/reblogged.  The first was under the heading “Why not choose death” http://lymphomajourney.wordpress.com/2012/12/04/why-not-choose-death-sunrise-rounds-sunrise-rounds/ and the second “Morphine too little or to much?” http://sunriserounds.com/morphine-too-much-or-too-little/

I read the articles through the eyes of a primary caregiver who has prayed for her child’s death many, many days.  https://tersiaburger.wordpress.com/wp-admin/post.php?post=3&action=edit .  BH, (Before Hospice), I often blogged about The Right to Die with Dignity…..

Over the past 10 years I have seen my child suffer so much indignity and indescribable pain.  I have seen the despair in her eyes, the helplessness in the eyes of her boys….I have stood next to her bed and physically pulled my hair in frustration – tears pouring down my cheeks.  I have wept before God and prayed for Vic to die.  I begged God to take away her suffering.

I advocated the right to die with dignity.

Vic has been in the care of Hospice for the past 3 months.  In this time Vic has been given a new lease on life.  Hospice cannot change the prognosis but they have given Vic quality of Life.  For the past three months Vic has been able to occasionally get out of bed, go for milkshakes with her boys, she went to Jared’s confirmation and Jon-Daniel’s honours evening.  She completed her photo albums.

Vic is in renal and hepatic failure.  Her tissue is horrendous.  Her pain is under control!  As and when symptoms surface, Vic’s medication is adjusted.  She is treated with compassion and respect.  Her wish is the teams command….

As the situation is now I am so grateful that my child is alive.  I treasure every breath that she takes.  We chat, laugh and cry.  We dream of going to Italy in 2013.

So given the situation now what would I advocate – The right to die with dignity or the right to live?

I have no doubt that if Vic’s pain and symptoms got worse, I would want her suffering to end.  If it remains as great as it is now of course I want her to live.  But it is key that Vic is allowed to live with Dignity!

As much as I advocate the right to die with dignity I believe that the final decision lies with the sick person.  It is not for family or physicians to play God.  The patient has to be the only decision maker.

I must admit that if the decision was mine to make, my child’s suffering would have ended a long time ago.

We all have the right to Live with Dignity.   There is a huge difference between breathing and living…

Breathe may refer to:  Breathing, to inhale and exhale consecutively, drawing oxygen from the air, through the lung http://en.wikipedia.org/wiki/Breathing

Life (cf. biota) is a characteristic that distinguishes objects that have signaling  and self-sustaining processes from those that do not,[1][2] either because such functions have ceased (death), or else because they lack such functions and are classified as inanimate. http://en.wikipedia.org/wiki/Life

BH (before Hospice) Vic breathed.  Now she lives.  She may not live for a long time but she has the right to live with dignity!

 

Relevant posts:

https://tersiaburger.com/2012/06/04/5-6-2012/ No one will love me ever again

https://tersiaburger.com/2012/06/12/12-6-2012/ (Eat, sleep, Vomit)

https://tersiaburger.com/2012/08/17/the-right-to-die/

https://tersiaburger.com/2012/11/15/an-end-of-life-discussion-is-one-of-the-most-important-things-to-do-right/

https://tersiaburger.com/2012/10/01/sometimes-the-pains-too-strong-to-bare-and-life-gets-so-hard-you-just-dont-care/

https://tersiaburger.com/2012/09/14/palliative-care/

https://tersiaburger.com/2012/08/22/rest-in-peace-tony-nicklinson-brave-warrior/

https://tersiaburger.com/2012/08/20/768/ (How to die in Oregan)

https://tersiaburger.com/2012/08/02/5-stages-of-dying/

https://tersiaburger.com/2012/06/13/im-going-to-dance-my-way-to-heaven-because-ive-already-been-through-hell-14-6-2012/

Today was a bad day


Vic and her boys Christmas 2011

Christmas 2011

When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.

So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.

Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!

An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.

My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!

As usual I digress.

Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her.  She fears that the boys will abandon her and look to us, the grandparents, for parenting.  She fears losing the only “position” in life that she has left – the position  of “Mother”.  It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.

Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.

I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!

Today was a bad day – again.

Dummy’s Guide for the Parents of a Terminally ill Child


Danie and I with a happy and carefree Vic at Mabalingwe!

Vic and the boys before she had her blotched back operation

I often read about a child that had been ill for a long time and the parent being in denial. Death is never discussed. I know it may take months or even years for Vic to die. Maybe, with a bit of luck, I will die before she does. But when either one of us dies there will be nothing unspoken. Vic and I talk a lot. We talk about many things. If ever I think of something that I am not certain of, I ask her immediately.

I have fully accepted that Vicky is always walking the tightrope even when she is doing great. It is the nature of the beast and the beast can take you by surprise.

We have spoken about heaven and what a peaceful, healthy place it will be. We often speak about meeting again in heaven and Vic always says she is not scared of dying. Vicky feels terrible about leaving us behind.  She worries about leaving us all behind. She worries about how sad we will be. I wish I knew what to say to truly put her mind at peace and to let her “let go”…

It was very difficult to first raise the question of death. It started approximately 8 years ago with a tentative “Sweetie, is all your paperwork in order before you have this surgery?” and progressed to discussing and shopping for 18th birthday gifts, Confirmation bibles and 21st Birthday Keys. It was strangely “pleasant” going shopping with Vic. I knew that her mind was at ease having done the shopping. Maybe she will be around for these milestone events. Maybe not….. But Vic is prepared. She is far more prepared than I am. She has written letters to be read after her death. She has “special events” cards that I will give the boys when the occasion or need arises.

To arrive at the point, where we are, has been hell! No matter what age your child is, when you first find out that your child is terminally ill, your initial instinct is to shelter the child. (Regardless of the child’s age – the child will always remain the child!!) The parent’s first instinct is to leave no stone unturned. You watch the child like a hawk, looking for small signs of improvement or deterioration, looking for symptoms, hoping against all hope that the doctor made a mistake!

I analyze every ache and pain, hoping that the stomach cramps are merely side effects of the medication. I know when Vic is heading for a UTI; I know how her body reacts to different medications. Unfortunately there is no “Dummy’s Guide for the Parents of a Terminally ill Child”.

Professional counselling is available at a terrible cost. By the time your child is diagnosed or rather sentenced to terminal illness, hundreds and hundreds of thousands of rands has been spent on medical bills. Within two months of the new medical year the medical aid is exhausted….. The medication and treatment cannot stop regardless of the claimable amount left on the medical aid limits…  I have said it before – morphine or counselling???? No contest! Morphine wins hands down. Now in a civilized world Hospice should enter the picture at this stage….. Unfortunately we live in South Africa and Vic does not have AIDS or cancer. I pray that she will find the peace that I know she does not have.

No-one in the world can live in so much pain for so long!

It has to end sometime.

A day in the life of Vic 15.7.2012


A day in the life of Vic.