Tag: England

“Time takes us farther away…”


I have battled to blog. I feel that my words are rehashed from one post to the next. My emotions are the same.

My DiL and the three girls have spent 3 weeks in South Africa. It has been amazing hearing the patter of little feet down the passages, shrieks of laughter and anger… I will always cherish the little arms around my neck, the warm little bodies in my bed. I cherish the time I got to spend with my DiL; the chats into the early hours of the morning and the countless cups of tea. It reminded me of when Vic was still alive. I dread leaving England on Monday to return to my solitude and grief.

I feel guilty about posting my same tearful stories of grief and I feel guilty that I have become embarrassed by exposing my soul to the world – friend and foe alike.

The past four weeks life has been easier. I have laughed and smiled. I have had fun.

In 8 days’ time it is Vic’s birthday. I am filled with trepidation as to how I will cope. The second I think of Vic, tears well up in my eyes and there is this stabbing pain in my heart. I have decided that I will not move Vic’s ashes into the garden. Vic will remain on the sideboard where I can see her and run my hand over her little casket. Vic will not be exiled into the garden. She is part of our lives and she will remain exactly where she is.

I am wondering whether I should bake Vic favourite chocolate cake… The boys want to send up Chinese Lanterns we actually wrote messages on, on New Year’s Eve 2010. Vic was desperately ill in hospital and moved into ICU on the 1st of January 2010. She was devastated. The staff allowed us to spend the evening with her.

Vic being moved to ICU on New Years Day 1

At 12 O Clock we went outside to send up the Chinese lanterns. It rained and we undertook to do it when Vic was home again. Somehow we never did. When we returned to the ward, the staff had assembled in the visitors lounge. Someone had conducted a Mid-Night service. The staff sang beautifully and prayed for the patients. Many of them laid hands on Vic. Vic cried. Jon-Daniel was inconsolable. We all cried.

One of my blogger friend’s sent me this email “Oh, Tersia. You are held tight in the grip of horrific grief. Simply knowing that someday you will wrench free from such a suffocating grasp brings no relief at this moment. You already know you cannot fight it. Flow with the “ocean of tears.” A great deal of the horror is behind you, but you are reliving it. I distinctly remember that the WORST time in my grief came at six months and followed me until the end of the first year. Like an amputation without anaesthesia – you are deeply suffering and so many people feel your pain. Keep writing, crying and feeling. The ocean of tears will take you to a new shore. Time takes us farther away from our loved one. That is the agony and the anaesthesia. Such conflict that creates! Feel my hug because I’m with you.” http://judyunger.wordpress.com/

Another one of my blogger friends, Julie, is taking a sabbatical from blogging. She wrote “Just until my heart catches up with my voice. So much is happening, and so much is not happening – argh!”

I wonder whether my heart will ever catch up with my voice…

I am alive


Vic and my eldest UK grandchild in 2010

I am having a wonderful visit in England with my UK grandchildren and kids.  The house is filled with the patter of little feet and shrieks of laughter and despair.  Toys lie scattered on the floor and little arms and legs curl around their Oumie.  It is a happy home, and I am fresh meat…

“Oumie, please can we jump on the trampoline?”

I have spent two days jumping on a trampoline…Thank God it rained today!!!

I have been consumed with the feeling of “life” in the household.  Life, joy, movement…easy laughter and sibling rivalry. Everything that poor Vic never really experienced.

How desperately she wanted to live. How desperately she craved a normal life. How desperately she craved to LIVE! How desperately we wanted her to live.

We never have enough time. We always want more. Vic wanted more time. On the 24th of September, last year, when the Hospice doctor came in for Vic’s evaluation, Vic said “I thought I had more time…”  https://tersiaburger.com/2012/09/24/mommy-i-thought-i-had-more-time/

Six days before her death she cried and said she wanted to live. “If only I could live for another year…”

“How little we know of what there is to know. I wish that I were going to live a long time instead of going to die today because I have learned much about life in these four days; more, I think than in all other time. I’d like to be an old man to really know. I wonder if you keep on learning or if there is only a certain amount each man can understand. I thought I knew so many things that I know nothing of. I wish there was more time.” –Ernest Hemingway.

I am wordless.

I know that I am still numb.

I am sad.

I am happy.

I am alive.

I wish I wasn’t…

I don’t want to ever leave my loved ones – as my child did not want to…..

Vic and the Girls
Vic and the Girls

Life is so unfair!!!!

Thank you God


I just finished a batch of choc-chip cookies.  The house is quiet and sweet smell of the biscuits has permeated the air.  The Christmas tree lights are flicking and the first batch of gifts beautifully wrapped.  It is the season of Christmas. Two weeks ago I despaired that Vic would not live to see Christmas. Dr Sue came and saw Vic this morning.  She lanced the cellulitis
abscess on Vic’s arm.  My baby girl was so brave!! Sue told us of a young man who came to see her in her rooms with a small abscess in his face.   He cried with pain.  Sue told Vic what a brave person she is…I was so proud of my little girl. Vic’s heart and pulse rate is very elevated.  She has a kidney infection.  Kidney infections make her tired. I just checked on Vic and she is sleeping so peacefully.  She has a serene expression on her beautiful face and she is truly pain-free tonight. Sitting here I am counting my blessings. My baby girl is home.  I cannot begin to imagine how difficult it would have been if Vic lived elsewhere or if she was married or involved.  I can now care for my child without having to consider my “position” in her life.  I am able to be her mommy and take care of her. The boys are settled and happy living with us.  We love having them so close to us.  They are such well-behaved, kind and helpful boys!  Before Vic moved home the boys, mainly Jared, had to cook most days.  Now they are able to be children. Life has settled into an easy routine.  We have laughter and fun.  We cry and despair.  We hug.  We talk and constantly affirm our love for one another. Vic is spending a lot of time with her boys – talking.  She helped with the preparations for Jared’s 16th birthday party.  Vic passed me the spices when I baked this year’s Christmas cakes.  We laughed when we decided the cake needed another “splash of brandy”.  Vic “chose” her Christmas Cake. My wonderful husband is such an amazing person.  He is my rock and pillar.  He loves and protects us. I am happy and content with our lives. Thank you God for this time of closeness.      

Terrorists and angels


I have come to the conclusion that life is about missing people.

When I am in South Africa I miss the UK girls and when I am in the UK I miss the South African grandchildren…

I am having a wonderful time.  The girls are amazing.  Michaela has very aptly nicknamed Georgia, the middle girl, Osama… and Chloe the eldest “Bin Laden”….. Georgia (Osama) has the face of an angel…  She also has a mind of her own.  She knows what she wants and will not compromise!  When Georgia says “Me wants…” she means it!  She is fiercely independent and very bright!  She idolizes her daddy and wants her mommy to put her to bed and lie with her at night!  She falls asleep in the naughty corner…

Osama in disguise!

Chloe (Bin Laden) is heartbreakingly beautiful!  She is 4 years 10 months and just started Big School.  She knows her alphabet and numbers, she can write her own name, identify and read words!  Chloe has a “boyfriend” and she writes him letters “Freddy I love you”….  Chloe remembers South Africa and says she wants to go back home with me.  She has packed a bag and it is standing at the bottom of the staircase!

Bin Laden at rest!

Chloe is a daddy’s Girl.  She challenges her mommy all the time and is stubborn!  She will not apologize if she believes she is in the right!

The family Angel

Mackenzie is an angel!  I think God knew Danie and Michaela needed a break after the first two terrorists!  Her smile reaches her eyes.   Her sisters absolutely adore her.  She is fed-up with her bottle and is ready to switch to a cup like her sisters!

Two more sleeps and the girls go back to their own beds and I go back to missing them!

I am happy to report that Vic is doing well!  I think I am having a mild “separation anxiety” attack but I quickly drowned it in ice-cream!

 

UK Arrival


Mackenzie, Chloe and Georgia
Tears welled up in Vic’s eyes when I said goodbye.  “Have a wonderful time Mommy.  Give my love to my brother, Mac and the girls…”

“We will Skype every day angel”  I promised

“Bring our cuzzies back in your suitcase Oumie”  Jared said

And then we were on our way to the airport.  It took every ounce of my strength not to stay.  I kept seeing Vic’s tear filled eyes….

It was a wonderful flight.  I literally slept from Johannesburg to London.  I had a cup of tea at the airport and caught the coach to Coventry.  I slept from Heathrow to Coventry….

It was so great seeing Michaela again.  We had lots of tea and chatted non-stop.  Mackenzie, the one-year old baby cried and would not sit with me.  We pull faces at her and chat on Skype but that is so different to real life.  She will warm to her Oumie!

At 3pm we first collected Georgia from Nursery School.  She was quietly sitting on the carpet in her class and when she saw me she just mouthed “Oumie…”  We hugged and kissed and she held onto me as if to say “Don’t go…”

At 3.15pm Chloe’s classroom doors opened.  Chloe was sitting next to a little boy and did not notice me at first.  Her teacher called out her name and she got up to walk out of her classroom.  Her blue eyes connected with mine and disbelief spread over her little face.  She went from walking to flying!

We spent a wonderful afternoon playing and chatting.  I got to help with the girls bathing.  Mackenzie no longer cries when I come near her and her sister wanted to sleep in my bed with me….

I am such a blessed woman.  I am surrounded by love.

 

And Hospice says “Go!”


 

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South Africa is advertised as “Sunny South Africa” with beautiful white shores and blue skies.  Barbeque is our national pastime.  Today is an overcast day.  It is as if Mother Nature is preparing me for England’s grey skies, drizzling cold and wet weather.

By now I assume everyone has concluded that I got the go-ahead from Hospice to travel!

I am hopping, skipping and jumping with excitement.  I cannot wait to see my UK babies.  Not only see them but hug, kiss and hold them.

Vic is insisting that I go.  We are both fearful but I also realise that I desperately need a break.  There is never a perfect time.  Vic is very swollen and not well at the moment.  She is partially obstructed but we will clear it by Thursday.  The Hospice Sister will pop in every day to evaluate and monitor her and report back to me.

In the words of the Hospice Sister Ceza:  “Things are slowly going downhill.  Go now.  You need your strength for what lies ahead”.

Timing, as always, is an issue.  Vic is well enough for me to travel but on Monday it is little Yuri (youngest grandson’s) school concert, Simone (2nd eldest granddaughter) birthday and Lani’s (2nd eldest stepdaughter) 40th birthday in the week that I will be away.  I have still not seen Liza and Adrian…. On the other hand I will get to see the girls “trick or treat”, Chloe is on a week’s school holidays and I will watch the extravagant Guy Fawkes fireworks displays and bonfires being lit… I feel so selfish and caught between two fires.

I am scared for Vic, worried about the boys, guilty for Yuri, Simone and Lani and excited as can be about seeing Danie, Michaela and the girls.    On the one hand I feel so selfish.  On the other hand I realise that I need a break.  It has been a year out of hell!  On a daily basis the demands on me are increasing.  It sounds as if I am having a pity party and/or trying to justify my decision to go to the UK….Yes I am!

The Hospice Nurse will start on Wednesday evening.  I must shop for groceries and ensure all meds are in stock.  I must write up a medication schedule for the nurse….

Got to run!  Lots to do!  I will make it up to everyone….I hope!

I will only be 14 hours away from Vic….

 

Vic’s Roller Coaster….


 

 The Voyage
Located at Holiday World in Santa Claus, Indiana, this roller coaster is a wooden hybrid consisting of a steel structure and wood tract. The lift goes up 163 feet, before falling 154 feet, then up and down 107 feet, and once more up and down 100 feet. Not only that, it goes through five tunnels, and it is the second longest wooden roller coaster in the world with a run of 6,442 feet. The top speed for the roller coaster is 67.4 miles per hour, third fastest in the world among wooden roller coasters. If the drops and trips through the tunnels was not enough to make you cringe, there are three 90-degree bank turns. http://roadtickle.com/worlds-scariest-roller-coasters

The life of someone who is chronically ill can be equated to being on a roller coaster ride.  Physically (and emotionally), you can be up and hopeful one minute and down and despairing the very next. The illness inevitably takes unexpected and unpredictable turns. One disease can dispose you to or give rise to another. Cortisone suppresses the immune system and is used to treat inflammation.  Cortisone weakens Vic’s bones further and has resulted in her developing Addison’s….This is frightening.

Every chemical that enters your body has a side effect.  Correct and adequate pain control, a healthy diet, balanced lifestyle is needed to minimize the effect of the illness on your daily life.  Living with illness affects every part of your life and every significant relationship you have.

There have been times in the past couple of months that all Vic can do is lie in bed and breathe.  Completing simple tasks is a cause for celebration….if Vic is able to get out of bed, showers and put on clothes, all in the same day, it is a major achievement.  There have been days (few and very far in-between) that she has been well enough to pick up the boys from school, take them for a milkshake.  She attended Jared’s confirmation and Jon-Daniel’s prize giving… We are so grateful for the good days!

Vic is going through a grieving stage where she (once again) is experiencing profound grief for the life that she had known and which has been lost forever. Vic is feeling lost and confused.  She is on the down ride hurdling to who knows what stage of her journey.

Vic is so sad that she is unable to actively participate in her children’s lives.  Most friends have stopped calling. Her sense of identity is blurred. She has been reduced from being a wife and mother to “a child”.

Danie and I planned to go to dinner on Friday night.  Vic was not well so we decided we would go on Saturday.  On Saturday Vic had another lousy day.  She fluctuated between being confused and weepy.  She was up and down like a little jack in the box.  By Saturday night she was asleep on her feet.  The intestinal cramping kept her awake.  She was weeping from pain and frustration.

Last night Vic cried “Mommy, I am such a burden.  You don’t have a life because of me.”

“Sweetie you are not a burden.”

“I am” Vic sobbed.  ”You can’t even go to dinner with your husband because you don’t want to leave me alone.”

“Sweetie, it was our choice to stay home”  I said

“But I have ruined your life” Vic cried….

Jared spent the weekend with a friend.  The child never goes out.  The two of us are too scared to leave.  I suppose we have become overprotective control freaks.

I have come to realize that I must take a break. It is not only for my own sanity but for Vic and Jared’s sake’s too.  My protective behavior is a bad example to Jared and is causing Vic distress.  My entire family is concerned that I will “crack” under the pressure.

I hope to fly to England for just over a week to spend some time with my UK children.  I have so much to arrange.  I must sort out the toy cupboard in the girls’ bedroom to make space for a nurse; I must appoint a nurse; get adequate medication in; get Hospice to okay the trip; buy groceries to see the family through and cook a couple of emergency frozen meals..

Vic’s symptoms wax and wane on this roller coaster ride of hers. Her illness is slowly depleting her energy reserve. A cold or infection can overwhelm her ability to fight it and her overall health and functioning can change dramatically – very suddenly. There will come the day that we will not be able to clear the partial obstruction or to contain the infection…..

I hope that it will not happen whilst I am away.

 

Jurnista – hope or looming disaster? 19.7.2012


I woke up early this morning with a very heavy heart.  It was Pain Clinic Day again.  There is no appointment system – it operates on a first come first serve basis.  Wonder above all wonders no traffic delays… I was first to arrive!!!

The amazing thing is that one of Vic’s ICU doctors ran the Pain Clinic today.  He immediately recognised me and we spent an hour discussing Vic.  He looked at her X-rays and was mortified by the fracture.  He was so sympathetic.  Over the past 5 years he has often been part of the ICU team fighting for her life.  He is well aware of the prognosis and confirmed that the arm would be terribly painful and that there was no chance of it mending.  He knows exactly what her little body has been subjected to over the years.

 We will try an additional tablet, Jurnista, which apparently works on two different pain receptors.  “Hydromorphone controlled-release belongs to the family of medications known as opioid analgesics (narcotic pain relievers). It is used to treat chronic severe pain. Hydromorphone works on the brain to increase the ability to tolerate pain. Hydromorphone controlled-release works by gradually releasing the medication into the body to help control pain that requires the prolonged or continuous use of an opioid pain killer.”

 

The side effects seem severe.  But he double checked with the head of the department so I am sure they know what they are doing!  I know that I will not have a peaceful night’s sleep at all!  But so far so good – it is a slow release tablet so no effect at all yet.  Oh, I forgot – it is highly addictive!

I am cautiously optimistic!  Just a little reprieve would be great!

 Poor Jared.  Just when we thought he has recovered so well from the Nissin Repair, chest pain strikes again!  (Nissen fundoplication is a surgical procedure to treat gastroesophageal reflux disease (GERD) and hiatus hernia. http://en.wikipedia.org.)

Jared was born with a reflux problem.  He was the best projectile vomitter ever!  As he grew older he stopped vomiting (in public) and never complained.  He then started chewing Rennies.  No matter who he went shopping with, he always came back with a pack of Rennies.   Obviously nobody reconciled his Rennies intake…  Until he developed chest pains!

Long story short is that after six months of treatment, the decision was made to do the Nissen repair.  I may have blogged how well Jared did post-operatively, how brave he was and how wonderfully he recovered.  So it came as quite a shock when I received a call from school yesterday asking me to pick Jared up as he had severe chest pains again…

 We spent the afternoon at the doctors.  Chest X-Ray, ECG and then a CT scan.  CT showed up several kidney stones… Average size 6.6mm.  The chest pain was caused by something called Costochondritis.   Costochondritis is inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum. 

Today Jared went for blood tests.  Once the results are back we will start seeing some specialists to resolve the kidney stone and calcium build-up problem.  The Dr suspects Jared has either an autoimmune and/or connective tissue problem.

 I was thinking today, that if we only have one life, how come it is so crappy?  Why can I not be the ill one?  I have made many mistakes in my life and stepped on a couple of toes in my career.  People love me or hate me.  Vic has never deliberately gone out to hurt anyone.  She was born with this dreadful disease.  And now my beautiful Jared… I could not bear going through this again with him.  He has such a pure heart.  The scariest thing is that he has witnessed his mother’s struggle and steady decline over the years. 

ImageThere are times that Vic cannot remember – the times that she was in ICU, ventilated, sedated, critically ill – all of this the boys lived.  Vic does not know what tomorrow holds but if Jared is diagnosed with OI he will know exactly what lies ahead of him.  I see the helplessness in his eyes when he looks at her.  I hear his frustration with her battle…  Please, if there is a God of Mercy, let Jared be spared this. 

Tonight I am not in a happy place.  I spoke to the UK kids and feel content that they are settled and doing well.  Spoke to the little ones but the longing is worse than ever.  Chloe graduates tomorrow.  I am not there to share this milestone in her life.

 Life sucks.

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