It did not hurt at all….

Vic and her boys on the beach.

He eased his body onto the mattress while pulling up the covers and rested his head on the pillow.  There are far too many memories of his selfishness, but he will not deny them; he will learn from them. That is both his prayer and his hope.  Mercifully, the memories were not all bad. He smiled as another one surfaced.

This is an extract from a blog of a father’s journey after the death of his young son.  Like all parents he is wracked by feelings of guilt and inadequacy.

Shortly after her third birthday Vic developed a bad cold.  Her nose was running and I asked her to go wipe her it.  She looked at me and in her most defiant tone of voice said “No!  I won’t”.  I gave her a light smack on her bum.  She moved her little arm in front of her bum in an attempt to stop me … three of my fingers struck her arm.  She screamed!  I immediately knew I had broken her arm…

The x-rays showed that the ulna was broken in three places…. Imagine my horror, guilt, feelings of inadequacy and self-doubt!

I worked hard as a young mother.  I was young, divorced, a single parent climbing the corporate ladder.  My child had been diagnosed with Osteogenesis Imperfecta (brittle bone disease) and I needed a lot of money to keep Vicky alive and living a fair life.  She attended a private school.  Did I neglect her at times as a child?  Yes, I am sure I did.  Not because I wanted too but because I had to work extra hard for that bonus or the next promotion!

Did I abuse her as a child?  Absolutely not!  My neighbors and some emergency rooms did however think I did…  By her 3rd birthday she had had 40 fractures…

When Vic was a little girl there was no internet and Osteogenesis Imperfecta was a “new and extremely rare” disease.  I spend many hours, days, weeks even months researching OI in libraries.  I went from doctor to doctor.  I tried alternative medicine, physiotherapy and hormone treatment!    I have spent thousands of hours on the internet researching every single medical report, diagnoses, blood test result that Vic has ever received.  I have bullied doctors, nurses and anyone who ever dared cross our path.  An ICU sister once told me I am a control freak and that I feed off Vic’s illness!

I can however honestly say that I did my best.  I cannot apologize for the mistakes I made as a mother as, at the time, whatever decision I made, I thought it was in Vic’s best interest.

Am I special?  Absolutely not!  I only do what any other mother would do under the same circumstances.  I cringe when people say “oh you are so brave” or “Oh you are so special” or “What an exceptional mother you are.  Vicky is lucky to have you as a mother”.  Nothing could be further removed from the truth…  I am the one blessed with an incredibly brave, compassionate, brilliant child!  Vic has enriched my life so much!  If I could choose a life with a healthy (different) child where I could have a life of my own, I would not.  Vic is part of my journey.

I come from a long line of very good mothers…My Mom taught us the values of being a “family”, honesty, unconditional love, caring and nurturing… I am surrounded by good mothers.  Vic is a good mother to her sons.  Esther, Lelani and Michaela are good mothers to their children!  All my grandchildren have good mothers.

Mothers love the way love is needed.  If the child needs caring they get caring, if they need nursing they are nursed.  A mother’s love is love in its purest form.

When Vic was 10 years old she lied to me about a school test.  It was not the first time she had fibbed and I knew I had to punish her.  Lying is an unforgivable transgression!  I always told Vicky that it is better to face my wrath for 5 minutes than to lie to me and destroy the trust that we had forever.  If she lied I would ALWAYS doubt her…Remembering the broken arm episode and knowing that she knew that I was a pacifist at heart, I decided the worst punishment I could give her would be a smack on her bottom.  I made her lie on her bed, on top of her arms, and gave her three smacks with my slipper.  (It sounds so barbaric!)

She smirked “It did not hurt at all” and I sobbed….

I phoned my Mom and sobbed “I am such a failure.  I am such a lousy Mother!  My child is lying to me.  I failed as a mother AND I GAVE HER A HIDING!”

Mom quietly asked me “What can you do to be a better Mom?”

I replied “Nothing!  I don’t know what else to do! That is why I am phoning you!  I need guidance and advice!  Please tell me what to do!”

My Mom gently replied “You can never do better than your best!”

These wise words have remained with me all my life.

Good decisions or bad decisions…I did my best….

Right or wrong…I did my best…







This is Vic’s Journey

Despite the fact that Vic has known for a long time that she will not die from old age the grim reality of Hospice involvement has forced Vic to come to terms with many losses.

 “I still can’t believe it’s going to happen. I thought I had more time. I’m tired but I don’t feel that bad. I just feel like such a burden! I am so worried about how you will cope Mommy.  We have always been so close….” Vic lamented this past week.

I am told that Vic is expressing many normal emotions that occur near the end of life. She is feeling the shock of how final death is and the guilt of being a burden on the family. Vic is also concerned about her family she will leave behind….

Knowing that death is imminent is takings its emotional toll on all of us

Vic said tonight that she has never been more scared in her entire life.  She is scared of being “isolated” from us.  She fears that we will not cope.  She is so scared of the pain.  She is so scared of leaving the boys behind….

I blogged on Vic’s fears before.   That blog was based on some research and actual observations.  Now the fears have intensified and are more real than ever. The situation has changed so much in the past three months.   For the worse!

The good thing is that Vic is actually sharing her fears with me.  Tonight we prayed over her fears.  Vic, at last, is dealing with her fears.

Vic is not ready to die. I am certain that very few people actually ever feel ready to die. I have read that it is perfectly normal to feel angry about life being cut short — it’s unfair and you have a right to be mad!  Unfortunately, anger often gets directed at those closest to us, the ones we love the most. We feel safe with these people and know they will probably accept our anger and forgive us for it.  Vic over the past couple of months has lashed out at the boys and I.

Vic is now channelling her anger as a source of energy to help her take action where it’s needed. She is telling us, her family, things she really wants us to know. Vic has re-channelled her anger to do meaningful and positive things.

Vic feels guilty about being a burden on us.  She also feels guilty that she will be leaving her children behind.  Tonight she told me that she felt guilty for distracting me whilst I was driving, 32 years ago, and we were involved in an accident!  I told her that I felt guilty for yelling at her when she was 4 years old.  Until my dying day I will always remember the fear and confusion in her dark brown eyes….

Worrying endlessly about these long-gone things won’t make it feel better about them. It won’t ease the burden we are carrying. It won’t make us feel better. It won’t make Vic live longer…

We spoke and I told Vic that we simply have to let things go.  We cannot change the past.  We must fix what can be fixed and try to let go of the things that cannot be changed.

Vic is stressed that Jon-Daniel and she have drifted apart.  He is angry with the situation.  She wants to spend time with him to rebuild their relationship.

Vic is no longer looking ahead to a seemingly “endless” future. She has lost so many things already.  The strength to get around like she used to, the ability to get together with friends….. Vic feels distanced from friends who cannot handle the fact that she is going to die soon.

Vic has had many physical and emotional losses which have come before the loss of life itself.  Yet she has gained some things too.  She is seeking spiritual peace, a new relationship with her God.

Hospice has given Vic Azor for the anxiety.  I believe that the drug is allowing Vic the calmness to seek spiritual peace and closure.  She is getting her life in order.  Over the years we discussed death as a natural extension of life….  Now she is discussing her funeral with me.  Psalm 23 ans 1 Cor 13 will be the readings…  What I will dress her in… Her pallbearers…

I sense a loneliness of the heart in Vic.  I cannot imagine what it feels like to be aware of the fact that you are facing your last months of life, planning your funeral….No matter what we do or say – this is Vic’s journey.

I remember how I cried when I watched the movie Passion of Christ and saw Mary having to stand by, helplessly,  whilst her son suffered carrying The Cross…  She had to stand by and watch Him die the cruelest of cruel deaths…

Tonight Vic prayed “Dear Lord Jesus, we have not been friends for a long time.  Yet I have come to you tonight to ask You to put Your arms around my children and to protect them…”

God please have mercy on my child.