Tag: Medication

Extra tablets for your birthday….


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.

Happy birthday baby!

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.