Vic’s 3rd birthday in Heaven

Monday, the 31st of August 2015 was Vic’s third birthday in Heaven.

It was difficult….

It was the most difficult birthday to date…..

From the second I opened my eyes waves of grief crashed over me. My only conscious thought was to breathe. This too would pass.

Minutes before the clock struck 12 I thought “Now there are merely minutes left of this birthday. Tomorrow the mask is back in position. The world will see what they want to see.”

“I will indulge and consciously soak in this heartbreak for another couple of minutes. I remember the way Vic embraced her birthday. She loved every second of the day…. But now this day is mine – a day of reflection, a day of gratefulness, a day to celebrate the miracle of my daughter’s life and to mourn her death.”

From the first second I learnt I was pregnant I starting thinking, planning and fantasizing about my child’s life. I imagined a sport star; a brilliant academic… a family of my own exactly like my family. I dreamt of being a mother like my mom was. In my mind I created a beautiful world for my little baby.

Then my beautiful little baby daughter was diagnosed with Osteogenesis Imperfecta. My world crashed into a million pieces.
“Your daughter will not live beyond the age of nine…”

I thought I would lose my mind. I started spending every spare minute of my life researching Osteogenesis Imperfecta…finding a doctor that would help and cure my child. Thirty seven years after Vic’s diagnosis Vic finally died.
Hundreds of hours in theater; years in hospital, more years filled with pain, indignity and suffering has passed.

The beautiful world I dreamt of for my child was just that….. A dream…..a nightmare.

The death of a child is a pain so deep that it cannot be expressed in words.

The death of a child is life changing.

The loss of a child is a loss that the parent, no matter how much time goes by, will continue to mourn for their entire life. No matter how much support there is or isn’t, it is a journey a parent travels alone.

In the first year I was scared. I felt the madness gnawing on my soul. Today, I am better. I can breathe.

But, I will NEVER stop grieving for my beautiful angel child.

Another birthday…..one year ago

Yesterday I celebrated (another) birthday.

Late Saturday night Vic’s restlessness was indicative that she was determined to be the first to wish me. At 11.30 pm she came through and said “another half hour….. I want to be the first to wish you Mommy. I just want 30 minutes alone with you on your birthday…”

“No problem angel. I’ll switch the kettle on.” I said

“I will be back in a minute” she said

I made coffee and checked some e-mails. At 12:00pm I expected her to come through singing “Happy Birthday” but no Vicky….

I went through to her room and the poor baby had fallen asleep on her bed…

Jon-Daniel came through and brought me a cup of tea on a tray, with a gift and card and a rose! “Happy birthday Oumie” he said.

He had bought a book I have wanted to read for a while “The Elephant Whisperer” – It is an inspiring, true life drama of a herd of wild African elephants on an African game reserve. The herd is destined to be shot for dangerous behaviour when this special human being, Anthony, intervenes to try to save their lives. I was so thrilled that he remembered.

Just before 01:00 am Vic shuffled into my TV lounge.

“Oh Mommy, I am so sorry I fell asleep. I thought I would just close my eyes for 5 minutes whilst you make the coffee…”

We sat and chatted for a while. Vic shared her good wishes with me and we just sat and spoke. We spoke about our very special mother-daughter relationship. We spoke about years gone by and how blessed we are to have this time together. (I cannot imagine Vic married and living in someone else’s home on her final journey.)

The girls, Esther and Lani, arrived at 10:00am with gifts, a cooked meal, dessert and cake. The grandchildren set the table… My sister Lorraine and dear friend Judy arrived bearing armloads of gifts. The grandchildren had written me letters and cards – it was so special. Vic bravely cooked a pot of rice and had lunch with the family. All the grandchildren swam and played tug-a-war! We laughed and joked.

It was a perfect day.

Esther and Lani planned the day to start early whilst Vic is at her best. As the day progresses so her energy levels decrease. Immediately after lunch Vic went to bed. She was in so much pain and absolutely exhausted.

All the grandchildren wanted to stay.

Sunday evening we Skyped my son and his family in the UK. Vic and Danie spoke. Vic and Danie Jnr have a special bond.

Twenty two years ago I married Danie Sr and his four children; Esther 23, Lani 18, Liza 16 and Danie 11… Danie married me and one, sick, very protected, spoilt brat, Vicky, aged 16. Vic and Danie Jnr were the two kids who lived with us. Vic embraced her new family. (I was petrified of the children!)

Vic’s siblings have been amazing over the years. I could never have coped as well as I do if it was not for their love, support and encouragement. The siblings are fiercely protective of their little sister.

Vic and Danie Jnr spoke for at least 10 minutes last night. It was a sad conversation between a brother and his older, little sister.

“I miss you so much Little Brother” Vic said

“I miss you too Vic. How are you feeling?” Jnr asked

“I am battling Boetie (Little Brother) Vic said

“We are coming to visit in April then I will see you Vic”

“I don’t know if I am going to make it to April” Vic said

“Just hang in there Vic. It is not that long to April…” Jnr consoled her

“I know but I am tired. I am just missing you” Vic cried

“I will fly over for a weekend. I want to see you again” Danie promised

Vic was so tired last night. Her little body cannot handle parties anymore. She tries so hard. This weekend we will have Jared’s 16th birthday. It is only his birthday on the 26th but most of his friends are away for Christmas so we have his friend party an early in December.

I know this will more than likely be another last for Vic.

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…

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.

In three day’s time…

In three day’s time we will celebrate Vic’s birthday.

On Monday, at Heathrow airport, I unthinkingly picked up a bottle of “Beautiful” perfume. I looked at the bottle of perfume and put it down as if it was a snake that was ready to strike… Vic is dead. This year she will not wake up to the sound of us singing “Happy Birthday”. There will be no shrieks of “Oh, thank you! This is EXACTLY what I wanted!” There will be no birthday party this year.

Vic opening her birthday gift from her Dad last year. The boys were so excited and everyone wanted to set up the “iPad”…

This year we will light candles for a precious mother, child, friend… We will send prayers to Heaven.

“Live like you were dying” – Tim McGraw

I read this post today – http://daysnet.wordpress.com/2013/02/03/we-need-to-step-back-and-just-breathe/ I always remember the Tim McGraw song

“LIVE LIKE YOU WERE DYING”

He said “I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin’ ’bout the options
And talkin’ ’bout sweet time”
I asked him
“When it sank in
That this might really be the real end
How’s it hit you
When you get that kind of news?
Man, what’d you do?”

He said
“I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying”
He said
“I was finally the husband
That most of the time I wasn’t
And I became a friend a friend would like to have
And all of a sudden going fishin’
Wasn’t such an imposition

And I went three times that year I lost my dad
I finally read the Good Book, and I
Took a good, long, hard look
At what I’d do if I could do it all again

It dawned on me that we have been luckier than most. We have lived as if Vic was dying all our lives. We lived every second. Vic lived every second. Only the last week of her life she went into dying mode. Only once she was sedated did she succumb to dying. The rest of her life she lived; we lived her life. Every single birthday we celebrated Vic’s life.

We have a family tradition, (which the kids hate), of having eulogy speeches on everyone’s birthday. So on our birthdays we would go around the table and everyone gets to say something nice of the birthday boy/girl… We call it our “Living Eulogy”… So often we only speak well of the dead. We treat the living with contempt and disregard; we do not acknowledge their achievements and goodness…We are so focussed on success. Success by our own terms!

I am grateful for our family tradition and I will not allow it to die off… I am grateful Vic knew how much we revered her….

Vic did not have a career or a degree, fame or fortune. Yet she has touched thousands of people’s lives worldwide and will continue to do so through Stepping Stone Hospice. I am grateful that she heard how much we loved and respected her. The most common words were “You are the bravest person I know…”

Vic was an amazing mother. She loved and nurtured her boys. I wonder whether they ever witnessed her tears of pain when she cooked for them or made their lunch for school…. I did.

We will continue to honour Vic’s life through our actions and words.

Sweet 16

On the 26th of December 1996 Jared Colin Sadie was born. He was a beautiful, healthy baby boy. I cried with joy when I first saw him and that first “rush of love” hit me.

Vic fell pregnant 6 weeks after she got married. When the kids asked us whether they could get married I had a LONG talk to them about NOT having babies. They both said “We know…” I explained the dangers of passing the Osteogenesis gene onto a next generation of innocent children.

I will never forget that dreadful Sunday night when they told us that Vic was pregnant. My heart stopped. I sobbed in the shower. For the first time in her life I feared for Vic’s life.

Vicky refused flat out to have an abortion. She said the baby a gift from God. And so he was….

Jared is an amazing young man. According to our government he is now old enough to vote, get his learners licence for a motor bike and work… I look at him and I see a little boy who was going to be a stuntman; a young child helping his Mommy cook; get out of bed; walk down stairs…

Both Jared and Jon-Daniel are loving, compassionate monuments of Vic love and mothering.

Jared is a “computer nerd” with a wonderful personality. He has a keen sense of humour and wise beyond his years. He is fiercely protective of his mother. A very dear Saudi friend of mine says Jared has a “white heart”. (Albak Abyad” an Egyptian expression that indicates a person with a good heart. It’s literal translation to English is “You have a white heart” as opposed to being a bad person with a black heart).

Vic, once again, managed to get out of bed. She was falling asleep in her chair, but managed to visit with most of the guests who came, ate something and left. Laughter and joy reverberated through the house. Vic was the proud mother. It was a happy home for the day…

The boys have a hard time coming to terms with the stage that Vic’s illness is at. Jared’s first words when he comes back into the house after Siza leaves is “What did Hospice say?”. He researches every symptom and sends me links on liver and renal failure. He is an expert on Osteogenesis Imperfecta and was 9 years old when he spoke about his Mommy at a Public Speaking lesson at school. The subject was “My Hero“. We all expected him to speak of Nelson Mandela, but he chose to speak about his Mom. (His brother followed suit two years later)

He said that his mom is his hero because despite the fact that she is so ill she still looks after them…

Jared and his Mommy

Jared had a wonderful 16th birthday. He was absolutely thrilled with the Docking Station Vic had bought for him. As soon as he gets his license we will buy him a motorbike.

She ain't heavy - she is my mother — She ain’t heavy – she is my mother

Yesterday was a milestone in Vic’s life. I fear it may be the last she will reach. It is clear that Italy will not be possible.

I was so tired last night that I slept through Vic’s 23:31 and 03:00 “Vomiting” text messages…. Vic refuses to use the intercom! She feels it is “disrespectful”.

As much as Vic resents the fact I may have to bring in a night nurse.

I remember Vic’s 16th as if it was yesterday. Now she is a grown woman with two teenage sons – nearing the end of her tenure on earth

https://tersiaburger.com/2012/08/27/kidney-stones-on-the-move/

https://tersiaburger.com/2012/10/10/i-am-taking-a-break-from-your-blog/

https://tersiaburger.com/2012/07/07/chronic-illness-versus-terminal-illness/

https://tersiaburger.com/2012/05/28/22-2-2002-to-28-5-2012/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://tersiaburger.com/2012/10/16/and-the-winner-is/

A mother’s love is a glimpse of heaven – Joseph E Beck

Today was another milestone for Vic and the family. Jon-Daniel turned 14 and he woke up to his loving mother’s birthday wishes and kisses.

I could not help but think back to the day he started “big” school. Vic was violently ill but refused to be admitted to hospital before Jon-Daniel was taken to “big” school and settled into his new class… Seven years ago she placed her own life at risk to take her son’s hand in hers and lead him into a scary new phase of his little life.

Vic kneeled next to his little chair and told him school was going to be one of the greatest adventures in his life. She told him she loved him and he was in good hands. His brother would look out for him at break. He had to concentrate and listen to his teacher. “Mommy will see you after school” she promised.

When we left the classroom Vic collapsed. Colin took her straight to hospital. Silent tears ran down her cheeks.

“Mommy, please bring the boys to hospital this afternoon. I promised Jon-Daniel I will see him after school.”

I do not remember the exact details of that particular hospitalization episode but I do remember what a milestone Vic reached that day…

Yesterday my little girl dragged her body out of bed. When Vic and the boys moved home a year ago I bought her a doughnut-making machine. She had not used it. Jon-Daniel loves baby doughnuts and keeps asking her when they are going to make doughnuts. So, Vic made baby doughnuts with Jon-Daniel yesterday afternoon. It wasn’t a big batch but she was absolutely exhausted and in terrible pain after she finished his “birthday doughnuts”.

I wonder if he will ever realise what a superhuman effort it took for his mother to make him birthday doughnuts….

Vic bought Jon-Daniel a sound system for his 14^th birthday some time ago. It has been wrapped and ribboned for a while. I am so grateful Vic was able to give it to him, in person, this morning…. He was absolutely delighted! The boys had to go to their Dad this evening so Vic made the decision to take Jon-Daniel out of school early today. We did not have the normal “tea and cake” thing at home as we simply did not have enough time. We went to lunch and had a wonderful time! We screeched with laughter. The boys joked with Vic because she is so short…. (She loves being ragged about her (lack of) height) and the boys love humouring her!

“Mom can’t do a ‘high five’ Oumie – she is too short…” They just carried on and on joking with their mom.

Late afternoon, after the boys left, Vic and I quietly sat basking in the milestone day….

Vic said “You did not blog last night Mommy….”

“I know sweetie. I did reblog the article on Meredith Thomas. (https://tersiaburger.com/2012/10/11/lots-of-tears-with-less-than-a-few-months-to-live/ ) I was too sad to blog after reading that article. It really affected me you know…”

“It is so sad Mommy. I wish I could write to her and tell her what an inspiration she is to me…” Vic said. “I am so scared…. I have a hollow feeling on my tummy.”

We just sat in silence. I held her little hand knowing what she was saying. I did not have words for my little girl.

“I have such a good idea for your Christmas gift but I need the boys to help me.” she said

“Well, in 6 weeks’ time the boys will have finished their exams and they will have lots of time to help you.” I said

“I can’t wait that long Mommy. My health is too precarious. I must do it now…..”

With a hollow feeling on my tummy I wonder whether we will reach our next milestone….

I am taking a break from your blog

Jared and Vic lighting Jon-Daniel’s 13 Candles 12.10.2011

People have said “I am taking a break from your blog. It is too difficult for me to read” or “Some days I just cannot read your blog”….. Listen up people on the 20^th of July 2012 I blogged “When we first received Vic’s death sentence there was an absolute outpouring of love. But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives. My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace. Well, this time you cannot hurt us because you are faceless. “https://tersiaburger.com/2012/07/20/thank-you-god-20-7-2012/

My best friend says my blog is sad and I suppose it is. The blog however mirrors my deepest feelings. It is our journey and you (the royal you) don’t have to feel you are under an obligation to read my “sad” blog.

Well today I will however try and blog some happy moments. Jon-Daniel, Vic’s youngest son, turns 14 on Friday the 12 th of October. We are busy arranging his birthday party. He wants a pool party but I don’t think the weather will co-operate! Weather predictions are 80% chance of rain on Saturday!

Vic was born on one of the coldest days of the year. I remember sitting hunched up in front of the fireplace saying “if ever I am going to have this baby it is going to be tonight!” I finished work that day and was looking forward to my maternity leave. I had weird little contractions at work but paid no attention to it. My back was killing me! But I had work to finish and the staff held a little “stork party” for me. I lost my temper with someone at work and yelled at him! I ate ice-cream in front of a heater and craved a milkshake! It was such a busy day.

My case had not been packed as Vic was only due a month later….In true Vicky form she decided “enough is enough” and I went into labor that evening! Vic is a “lingerer” and was born 27.5 hours after I went into labor.

When I was admitted my mother-in-law accompanied me. She was plumpish with a youthful face. The maternity staff thought she was being admitted…. I only gained 8 pounds (3.64 kilograms) and barely looked pregnant. I still wore all my normal clothes.

When Vic was born she was so perfect! Her father said “Oh, look she has my toes!” She was heartbreakingly beautiful with a mop of black hair!

Some facts – Vic weighed in at 2.2 kilograms. She was a mere 48 cm tall. She was tiny but so strong and perfect! She was the best “pooper” in the maternity ward. Vic was a bottle baby and her preemies clothes were too big for her.

For the first two months of her life I was too scared to bath her. My mom did. Vic walked at 17 months but had her first tooth at 3 months. She had her first fracture at 3 weeks – sucking her thumb!

Vic was diagnosed at 18 months with Osteogenesis Imperfecta. By her 4^th birthday she had fractured 40 bones. Vic spoke her first words before she could sit and built basic wooden puzzles before her 1^st birthday. Vic spoke Afrikaans and English fluently by the time she was 3.

At the time of diagnoses the doctors said she would not live to the age of 12. Well she certainly showed them!

Every single birthday of Vic’s we have had lousy weather! It was always the last cold before spring sets in on the 1^st of September.

Vic does not have a good sense of humour. Wait, let me rephrase that – Vic cannot tell a joke! She loves a good laugh. She has a beautiful smile that reaches her eyes. Her dark brown eyes are truly the mirror to her soul. Her eyes are now either clouded from morphine or pain. Her eyes now “tear up” even when she is not crying.

Vicky is a people pleaser. She will do everything in her power to make people happy. She is also the most stubborn person the good Lord put on this earth.

Vic is a wonderful mother. She loves her sons unconditionally. Jared is her gentle giant. He helps her mobilize and makes her coffee. He will make her breakfast and lunch. He is gentle and tender with his Mom. He will carry her when she cannot walk. He protects her…. He has a brilliant analytical mind. He hates homework and studying. He under achieves at school. His room is not the tidiest in the world. He is an accomplished guitarist. Jared is generous and has an easy smile. Jared is her eldest.

Jon-Daniel is the genius (he has my brain – hahaha). He is a perfectionist and when he leaves for school his room is perfectly tidy. He immediately starts homework when he gets home. His lowest mark is for art – 78%. He is an accomplished sportsman. He only watches sport on TV and knows all the international soccer greats, tennis and cricket players. He makes Vic laugh. He fools around until she screeches with laughter. He is angry because she is ill. Even as a little boy he would cry to see Vic when she was in hospital. Once he saw her he would start acting up – insisting that we leave! He even saves airtime…. Jon-Daniel is her baby.

Vic loves her boys and her boys adore her. I wish their lives were easier. I wish I could save them the pain they live on a daily basis.

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