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.

Rest in Peace dear Friend 7.8.2012

Today we buried a very dear friend.  As his coffin was lowered into the grave, gentle snowflakes fell.  A light layer of pristine white forming on the dark, cold soil…..

One does not leave a funeral in the same way that you have come. One cannot help but have death on one’s mind.  One cannot help but be aware that such is the end of all life. One may look at oneself and have a new awareness that one’s body will not last forever. These thoughts are ones that humans must face and find a way to deal with. Some believe that the death is only the beginning of the next great mystery and the soul is eternal. Others take a practical view that death is all there is. Everyone leaves a funeral with thoughts of life and its fragility on their mind.

Today we bid farewell to a dear friend, a brother in every way but blood.   We know that friends like Dries come so infrequently that we want to cling to them and not let them leave.  We want to beg them to stay, but love’s power gives us the strength and the courage to let go. To let them leave when it is time to say goodbye and give them the wings they deserve. To let them fly into the boundless sky…… where the gentle snowflakes reminded us of them as it brushes against us

My regrets are many.  If only I had gone to the hospital to visit when I heard about Dries’ heart surgery……  If only I had gone to visit with Danie when he popped around after Dries was discharged from hospital……..  If only I had truly made Dries realize the value our friendship.  Regrets will not bring him back. I have become so self-centred in my journey with Vic that I have closed myself off from the world.  I have excluded friends and acquaintances and almost jealously guarded my pain.

I bid you adieu, my dear friend. Your kindness, your generosity and gentle spirit will live on through everyone whose path you crossed.   It is with love and the faith that we shared that I will move forward from here.  I will never forget you.

Rest in peace my dearest friend!

Though I do mourn for you my friend
And though I may cry,
And though you are leaving me
I do not say goodbye.
For goodbyes mean forever
Yet here you still remain.
Because, forever you will live
Here in my memories,
And forever in my heart
You will remain. (Thomas Barnes)

(That was for you dear friend, I love you, and will miss you)




Dries 2003