Category: Osteogenesis Imperfecta
Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube
This video touched me so deeply at every level.
I was petrified of holding Vic as a baby. I was even more petrified of anyone else holding my baby. I had a strict “Look but don’t touch” policy.
“Don’t worry,” people said. “She won’t break.”
Vic’s first known fracture was at the age of 3 weeks. She sucked her little thumb and fractured it… By her 3rd birthday Vic had had 41 fractures.
As she grew older she became more careful. Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.
At the tender age of 21 Vic got married. When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean… Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…
Vic embraced her pregnancy as she embraced life. She survived the pregnancy and the birth.
Jared was six weeks old when Vic started battling to pick him up. Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.
Baby Jared stayed with us for a couple of week whilst Vic recovered.
It was the first time in my life that I felt useless, hopeless and helpless. I could do nothing for my child. I had been relegated from being “the Mother” to being “the mother-in-law”. My position in the family had changed forever.
When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.
I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.
I remember Vicky believed that she was invincible…
I remember KNOWING that “Babies break bones…”
Time to say goodbye
Time to say Goodbye is a beautiful song and I especially enjoy the André Bochelli and Sarah Brightman version. It was the boys and my theme song on this holiday. A Time to Say Goodbye and heal….
As we toured Europe we lived Vic’s dream. It was her dream to go to Italy, stand in the Cistern Chapel, drink cuppachino’s on the streets of Rome, wander through the Christmas Mart stalls savouring the smell of Gluhwein and melted cheese….
I am filled with profound sadness every time I think of my child. Even if she lived Vic would never have been able to make the trip. The flight would have been too long, the cobblestone streets impossible for her wheelchair, the bus trips too long…
I cried when I saw the Pietà in the Cistern Chapel. This beautiful piece of art in a convoluted way symbolised Vic and my lives…
Both Mary and I were child brides. She was much younger than I was when she gave birth to Jesus – it is written that Mary was 12 years old at the time of her Son’s birth. Her child filled with wisdom and teaching as was mine… I once again realised, on this trip, how infinitely wise Vic was. She knew that I would have to remove myself from everyday life to heal.
She made me promise to do this trip with the boys.
Looking at the Pietà I saw a mother holding the body of her lifeless child. Tears filled my soul when I remembered holding the body of my lifeless child. For a fleeting moment I felt the heat that radiated from her fever wracked little body. I could hear the thundering silence from her breathing that had stopped…
I saw the lonely sadness of a mother isolated from the world in her grief. I recognised that isolation that I experienced at the second of Vicky’s death.
I stood there and realised that it will never change. I will always be isolated in my grief and longing for the child that I lived for. No one in the world could possibly love her the way I did. She was blood of my blood.
She loved her boys the way I loved her. She loved her boys with every fibre in her body. Her thoughts, fears and sorrow centred on her sons until she breathed her last breath. The blood of her blood. Her future…
Standing in front of the Pietà I realised that the closest bond is the bond between a mother and a child. Not a child and a mother…. Children move on and live for their children
Walking the streets of Europe I was filled with an all-consuming anger. Anger at God, anger at careless doctors; angry at a horrific disease called Osteogenesis Imperfecta. I was angry at the fact that my child was robbed. Robbed of a life with her boys. That I was robbed of a lifetime with my child.
As the old Year is edging towards the New I am filled with trepidation and horrific sadness. Not only for my Vic but for the many who crossed my path this year and who are enfolded in their own grief.
So much pain, longing and sadness as we look to starting another year without our loved ones.
I have survived my birthday, Christmas Eve, Christmas Day and Jared’s birthday. I have cried on my own, in the shower, in shops. I have been filled with rage and despair when I saw all the Christmas cards “For my Daughter”… I will never buy another card for my precious child. I will never be able to open gifts with her under the Christmas tree. Nothing will ever be the same again.
In three weeks’ time it will be Vic’s 2 year anniversary. Two long years without my child, my best friend…
I read that it gets worse as time goes by. It does get worse. The raw sadness has dissolved into a steady all-consuming pain. The longing to hold her one more time overwhelming.
And, although I know that it is Time to Say Goodbye I know I will never move on.
486 days; 1 year, 4 months; 69 weeks….
Oh dear God, will this pain never stop? Will my heart ever heal? Will I ever be able to look at a photograph without tears welling up in my eyes? No matter where I am or who I am with – I miss my precious Angel Child.
I know your pain is over. Remember the night you crawled into bed with me and I told you that I looked forward to your pain being over? Did you know that night how many tears I would shed for you? Did you know that my life would change forever?
Yes, I know you did. Your words echo through my mind…”Mommy, I am so worried about you. How will you cope when I am gone?”
My stock standard reply was “I will cope baby. I will remember your pain and be glad that it is over”. How stupid of me.
As time goes by I forget how sick you were my precious little one.
Then I look through my photos. I see your pain. I see death in your beautiful eyes.
You knew how hard it would be. In your infinite wisdom you tried to prepare me. You tried to prepare the boys… Sweetie, nobody or nothing in the world could have prepared me for the pain, the loneliness, the void…
Sometimes I wonder how many days it will be until we meet again. I pray it is soon. This is just too hard.
One year today
My precious child
Somehow 31,536,000 seconds or even 525,600 minutes makes far more sense than 8760 hours; 365 days; 52 weeks and one day or 1 year…
If feels as if a lifetime of sorrow has passed since you stopped breathing. If feels as if it has been a lifetime since I held you in my arms. It feels as if I have cried an ocean of tears.
In the past year I have aged. I have gained weight. I have existed. A year ago my life ended. The boys and I still burn candles for you.
I am still filled with rage. I know you were born with Osteogenesis Imperfecta but doctor arrogance caused you so much pain, suffering and indignity. I know that you would more than likely have died before me but perhaps with less suffering?
I will always miss you. I will always remember your smile, your laugh, your bravery. I will never forget how you fought to live.
Today I want to thank you for my beautiful grandsons. Thank you for remaining my little girl through-out your life. Thank you for fighting for so long. You were such a warrior!
I thank God that you came home to die. I thank God that I had the privilege of caring for you. I thank God that He entrusted me with something as pure and precious as you.
I am grateful that you are no longer fracturing vertebrae from vomiting. As much as I miss your laugh I do not miss your pain filled tears. I am grateful precious baby that your suffering is over.
I miss your company. I miss our late night chats, drinking untold cups of tea/coffee. I miss your text messages, your telephone calls, your shuffling footsteps down the passage… the smell of smoke alerting me that you are awake and sitting on your step…
I miss the boys laughter. I miss the joy that you brought into our lives.
We will continue to honour your memory – every day of our lives. Your legacy will live on in each and every person that is allowed to live until they die with dignity.
I love you Angel Child with every fiber in my body.
Your Silent Dreams by April D. Parker
I held you as you were sleeping…
All the while I sat weeping….
Gazing at your beautiful features…
For you were one of God’s Creatures…
I loved you from the minute you existed to be…
Living inside me, Dreaming silently…
You were always a part of my life…
Even before you saw day-light…
Looking down at you, I kissed your warm little hand…
Knowing you had passed on to the Promised Land…
You, my sweet baby, are forever my Child…
The fact you were in my life makes it worth while…
Undeniably I have hope…
The thought of seeing you again allows my spirit to lift…
I thank God to have had what time I had with you…
Love and cherish you I shall always do…
A Mother’s Tears
I have filled an ocean with tears.
Salty and bitter, they flow from my soul.
All the grief, all the pain
All the sadness, all the fears.
All the hurt, all the whys.
All the could haves, all the loss.
All the regrets, all the lost chances.
All the wants, all the goodbyes.
I have filled an ocean with tears.
Sweet and soft, they flow from my soul.
All the joy, all the laughter
All the love, all of the years.
All the rewards, all the smiles.
All the triumphs, all the hellos.
All that was right and all that was good.
All the kisses and hugs from my child.
I have filled an ocean with tears.
Salty and bitter, sweet and soft.
For love, for sadness, for joy, for pain.
I have filled an ocean with tears.
A mother’s love….. Day 5 of 48
A mother’s love is like God’s love; He loves us not because we are loveable, but because it is in His nature to love, and because we are his children. Earl Riney You taught me love. You taught me honesty. You taught me to love unconditionally. You taught me how to forgive and how to be strong. You are the strongest person I have ever known. You gave me strength when I was weak. When times were sad and tough you reminded me to be grateful for the small things in life. You taught me how to be myself. Most of all you taught me about life and how to live.
Deathbed promises kept and broken
During the month of August I again stood next to a deathbed. It was next to the deathbed of one of our patients.
I was touched by the absolute outpouring of love from the family to the patient. I have seen it at almost every single deathbed I have stood next to…. The second death I ever witnessed was weeks before my mother-in-law died. My Mother-in-Law was in a hospital. The lady opposite her was dying and moved into a dying-room. I was allowed to sit with her. I prayed for her and tried to comfort her. I spoke to her almost non-stop for 11 hours. In the evening her husband came to visit. He was not told that his wife was dying by the hospital staff…
“What is wrong with my wife?” he asked
“She is very ill” I said
“When will she come home?” she asked.
“You must speak to the staff” I said
“They say nothing” he said
“Your wife is dying… I am so sorry.”
I know it was not my place to tell this poor man that his wife was dying. But, if I hadn’t he would have had to live with the fact that hours after visiting hours were over, she died… He got to say goodbye.
I sat with the woman until she died. She was petrified of death. I could see that they were indigent people. Poorer than poor.
She knew she was dying. She was desperately trying to stay alive. Trying to console and calm her I asked her whether she was scared. She nodded. I asked her whether she was worried about something. Again she nodded. I asked her whether she was worried about her children. She again nodded.
In the heat of the moment I promised her I would help her husband look after her children… I made a deathbed promise.
The next day I tried to get her family’s contact details from the hospital. They refused to give it to me.
I have had to live with the fact that I promised a dying woman that I would take care of her children and that I broke that promise.
Extravagant promises to dying loved ones often pose an ethical conflict, defined as when opposing acts each fulfil an ethical value, but neither can achieve both. The situation also arises when one is tempted to lie to dying friends and loved ones out of kindness. A mother and daughter are involved in a fatal car accident; the daughter is dead, the mother is dying. “Is our daughter all right?” the fading mother asks her husband.
In such a case, it is reasonable and ethical to conclude that the kind answer, “Yes,” is more ethical than the truthful answer, “No.” A promise to a dying loved one may be an exception to the usual rule that it is unethical to make a promise one cannot or will not fulfil.
Often ridiculous and selfish promises are coerced from the loved ones standing next to a death bed. When we stand there we promise freely…we want to give the dying person that final peace of mind.
A classic example of a deathbed promise made in good faith is depicted in the black comedy “Where’s Poppa?” In this movie, the son promises his father, he would never place his senile mother in a home… At the time it was a reasonable promise but becomes increasingly more difficult to keep as the mother becomes more demented and senile. The vicious woman destroys every aspect of his life….
“Promises openly and freely made on the initiative of a dying individual’s loved one are true commitments. Promises coerced by a dying friend or relative and made out of kindness or guilt, on the other hand, should be re-evaluated at a less emotion-charged time. Both varieties of death-bed promises, however, create ethical obligations. They just can’t be as strong as the obligations created by promises to the living.”
I have stuck to every promise I made Vic. Many of the promises were heartbreakingly difficult to keep. Others were easy.
On Wednesday the 9th of October 2013 we had the official opening of Stepping Stone Hospice’s building.
It is one promise I was able to keep.
Hero to Zero – one year ago….
A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.
Vic basking in the winter sun!
Sunday was an amazing day. Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.
Lorraine moved a chair into the sun for Vic. Vic sat basking in the winter sun sipping lots of coffee. In true form, Vic on her occasional good day, pulled the dam from under the duck. She was like a little jack-in-the-box. Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.
Vic sobbed from pain and my poor sister wasreduced to tears. She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!
Vic dozed on and off but kept waking from the pain. Maybe she took some extra painmeds because she seemed disoriented? Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…
Sunday afternoon the boys came home after spending the weekend with their Dad. Danie took Jared and Kirsten, (Jared’s girlfriend), to church. Vic kept trying to get out of bed. She is so darn stubborn. She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication. She kept getting out of bed. She would just not stay in bed.
I got so angry with her that I said I would fetch Jared from church. I needed to remove myself from the situation. Lorraine said “let me stay with Vic” and I said “No! Come with me”
Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…
At home she was lying in a crumpled little heap full of blood and screaming from pain. Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her. Vic went hysterical when I said I was phoning an ambulance.
“No Mommy, No!!! No ambulance! No ambulance”
We agreed that we would try to get her to hospital in my car. Jared half carried her out to the car and then the drama began. We could not swing her legs into the car! She was screaming with agony.
I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed. Eventually we repositioned Vic in the car. Jared sat behind her and cradled her in his arms. The ambulance escorted us to the hospital.
At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept. Vic screamed and screamed with pain! From 21.30 to 03:00 they x-rayed and scanned Vic. Most of the x-rays were done in the Trauma section. Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.
Vic in ER
If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!! Mommy!! Mommy help me!!!”
The diagnosis – “impacted fracture of proximal metaphysis of right humerus”. Vic was admitted to the orthopedic ward and scheduled for surgery today. The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm, too great, for him to “pin” the arm. So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own. She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do? Pain control, bed rest… Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports??? I only picked it up when I read the reports this afternoon!!!! I had to report it to the nursing staff!
I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?
I am so angry with myself. This happened because I got angry with Vic. I should have stayed with her and not reneged my Caregiving duty. I should have had been there to bulldoze my stubborn child into remaining in bed. My temper has caused Vic endless, unbearable pain. Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this! I will never forgive myself for this!
Well with the bad comes the good as well. We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day. Actually, the whole week! Problem solved. She is too sore to move… And will more than likely still be in hospital on Wednesday.
The nurses just changed her bed linen and she screamed with pain! How are we going to take care of Vic at home? My sister offered to come through but two qualified nursing staff could not move her without causing major distress. She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc
For the first time, ever, I am at a loss. I am so tired. I don’t know what to do anymore.
In 2002 I was on top of the world. My career was at an all-time high, financially we were secure and I LOVED my job. I was able to work long hours and spend time with my friends. I was on 9 Church Committee’s and very involved with community work in the poor areas.
Then it happened…Vic had her blotched back surgery and our lives changed forever. I spent 22 days in the waiting room outside the Intensive Care Unit. My life ground to a halt.
We moved into a downward spiral of hospitals, doctor visits, x-rays, scans, 81 abdominal surgeries, pain, open wounds, hospital bugs, sepsis and wound dressings. I felt over-whelmed and out of control. Doctors and nurses prodding and touching my child. To them she was a commodity. But, to me, she was my life.
Slowly but surely my life changed… I became fixated with finding a “solution” to my child’s devastating health problems. After all, I am a Baby Boomer. We don’t accept bad situations. We find solutions. We sort out problems. I refused to accept the doctors’ prognosis as I did when she was a little girl. I was told that Vic would not live to the age of 12 when she was diagnosed as a toddler… I refused to accept it. Vic not only outlived the prognosis but lived to complete school, get married and give birth to two beautiful boys. The ventilators were turned off and Vic continued to breathe, live….
We went from one doctor to the next. I spend hours every day of my life on the internet looking for solutions and advice; it became a coping mechanism. I worked longer hours in-between surgeries. Quite frankly, work became a crutch. I spent less and less time with my family and friends…I suppose because I felt no-one understood my fear, my despair, my pain…
My fear, despair and pain became my constant companion. My computer and the internet my trusted friend…
One day, about 7 years ago, Jared asked me “Oumie don’t you love your family?”
“Of course I love my family! Why are you asking such a question?” I replied
“Because you are never home….”
I had to sit down and reassess my life. Quite honestly the financial implications of keeping Vic alive and care for her was daunting. I feared going home because I could not handle Vic’s pain…. I knew in my heart there was no cure. The mere thought of Vic suffering for endless years were terrifying! I could not bear to see the fear and helpless desperation in the boys’ eyes.
So contrary to what I have written before, and comments that have been left, I have not been the best mother. There was a time that I ran away. I was petrified of the thought that Vic would suffer for another 40 years…be dependent upon me for another 40 years… There were times that I thought to myself “There has to be more to life!” I felt lost in the in-balance of my life. No matter where I turned it was work and responsibility!
In 2009 my Dad came to live with us. He suffered from Alzheimer’s.
Whilst I reached a maturity level where I realized that being a caregiver is a privilege, not a burden, our lives changed.
I started sleeping downstairs many years ago when Vic was so ill. I was scared I would not hear her if I slept upstairs. I slowly slipped into a habit of working late on my laptop and then falling asleep on the sofa. This continued when my Dad lived with us. I still sleep downstairs on the sofa – waiting for Vic shuffling footsteps down the passage, text messages saying “Can I have something for pain?” or the intercom screeching! The intercom was the 911 call.
I slowly and inextricably slipped into depression. My entire life was dominated by my fears for my child. The caregiving demands steadily increased as the years passed and the situation deteriorated. It became a dark and difficult period for the entire family. We could no longer spontaneously decide to go to dinner, go away for a weekend or even a holiday. Every activity demanded a great deal of planning. We became more and more isolated as a family.
It is natural for family and friends to drift away when a loved one becomes ill. The longer the illness, the longer they stay away. By it’s very nature, caring giving is draining. It is far easier to stay home and rest than socialize outside the home. Isolation can lead to loneliness, depression, and illness. It takes energy and effort to maintain friendships when one feels tired and discouraged.
My salvation was cyberspace. I joined an Alzheimer support group, https://www.caring.com. Without the support group I would never had coped with my dad’s descend into Alzheimer’s. A year ago I started blogging on Vic’s final journey. I have found a cyber-community with parents who also lost children, friends with a word of encouragement, a kind words. I receive advice, support and information from a loving cyber-community.
I however realize that I need re-join life. There are days that I just want to stay on my sofa with a blanket pulled over my head. I fear that if I sleep in a bed I will never get out of it. In the TV lounge there is always people. Whether it be the boys, Danie or the housemaids.
Today I had tea with an old friend. For almost 4 years I have not been able to see her. She has a young son that I have never seen. Our friendship was reduced to the odd phone call or text message. Often she would phone and there would be a crisis with Vic. I would say “I will phone you back” and never get around to it. I isolated myself from friends. I was so miserable and totally absorbed with Vic that no “outsider” could penetrate my “barrier”.
My life centred round my sick child and family.
Despite the trauma of Vic’s death and coming to terms with the horrible loss, my life has changed. I have had tea with my new Magnolia friends and Christelle. We go out to dinner on the spur of the moment; we have been on holiday and I spent 4 days at a Spa with my sister! I have watched Jon-Daniel play hockey matches, started gym and started remodelling the house. I have seen a psychiatrist and take antidepressants. We have started Stepping Stone Hospice.
How amazing is this?
If the truth be known it is not amazing at all. I am dying on the inside. I cry uncontrollably – mostly when everyone has gone to bed. If the boys were not living with us it would have been so different. I KNOW I would still have been in bed. I am consumed with longing for my child. Last night I replayed 100’s of voicemail messages that Vic had left me….
“Love you Mommy…”
“Love you Baby Girl”
“The pain passes, but the beauty remains”.
I have flu. I get ill once in 5 years and I am a ninny. I do not handle pain and discomfort well… I whinge, moan and groan until I am better…
This time I have embraced my flu. I can stay in bed and there is no pressure for me to get up…. I can just lie in bed with my eyes closed and it is okay! For the first time since my precious child died I don’t have to communicate, talk or pretend. I can just be sick!!!! I have spent four days in bed not having to talk, smile or pretend….
I am sick to the core of my soul – not only from the flu but from heartbreak. I was able to feel the loneliness and emptiness that permeates my life since Vic died. For four days I have not had to smile or live – I could lie in bed and hope to die.
There are days that I really do cope. There are days that I am able to smile and laugh. Most of the time I live a lie…
I have made peace with the fact that my precious child’s suffering is over. I know that never again will she fracture vertebrae from vomiting, scream from pain, whimper because she does not have the strength to scream… But all I have done is learnt to accept that Vic was amputated from my life. I still have to learn to live without the amputated part of my body; the pain of the missing part of me continues to taunt me…
I miss my child so much! I want to love and hold her. I wish I could have protected her from the ravages of Osteogenesis Imperfecta and doctor error! No, I don’t have guilt…I did everything I possibly could for my baby girl. I just desperately miss her! I miss her company.
I am hoping that the pain will pass…I do remember the beauty of my precious Vic all the time. The wonderful mother and daughter that she was; kind and gentle; incapable of malice…Her beauty will remain with us for ever.
Tomorrow I will get out of bed and carry on living.
Stepping Stone Hospice
On the 1st of January 2013 we started Stepping Stone Hospice & Care Services in my suburb. We operated from my home with one highly skilled Palliative Care Nurse, a Palliative Care Doctor, a network of caregivers, a four women steering committee, one car and a lot of enthusiasm and energy.
Vic was our first death. Stepping Stone was borne out of her pain and her desire to “pass it (Hospice Care) forward”. Many years ago, I promised her that I would start a Hospice in her honour…. It would be her legacy. When Siza looked after my Dad in his final days we “connected”. She is a beautiful, compassionate, efficient person. She has a gentle yet confidence inspiring disposition, and she delivered on her promise to Vic on day one. When she came to set up the subcutaneous driver the first time she promised Vic that she would take care of her pain needs. This she did to the best of her ability.
I blogged on this new lease of life Hospice gave Vic. We have at least two and a half wonderful months where Vic was able to “live”… go out for milkshakes with her boys.
We have been so blessed. Six weeks ago we were able to move into an office on the premises of an amazing charity organization called Amcare. We now have a donated desk, laptop and printer. We have quite a lot of donated equipment such as wheelchairs, walkers etc. We only have one dilapidated chair but our work is in people’s homes not in offices!
People have generously donated second-hand clothes which more than provides for the pain medication that is needed to treat our indigent patients. Through generous donations by a couple of people we have managed to pay Siza’s salary, fuel and cell phone costs. We have been able to buy a software program that will allow us to invoice the medical aids, of patients, that have terminal care cover.
Today Trix received a phone call from a lady, our of our second-hand clothing benefactors, who asked whether we could meet with her brother….he wants to donate a building to Stepping Stone Hospice!!
Our God is a faithful God. We have not advertised nor marketed aggressively at all.
I am speechless with the wonder of people’s generosity and love!
Please pray that this will indeed happen!
Vic, your legacy will live on. Thousands of people will be able to live and die with dignity because you had a dream. I love you Angel Child. I know you are our guardian angel!!
Can angels read?
An Angel named Vic
Who knew that you could fly dear Vic?
One day you sprouted wings
Valiantly ascending heavenward
despite all you had endured.
At last the pain subsided
and all at once was gone.
You left a radiant legacy
that lovingly carries on.
A beautiful spirit in the sky.
Now free from sorrow, hurt and pain.
so many loved ones
here on earth
await embracing you again.
Wendie Jeanne Deacon©
3 Months Ago
Every day I go to Vic’s Facebook page to see whether someone remembered her… I leave her messages… Today at 14:18 I dialled her mobile number out of habit.
Exactly three months ago I knew my child’s life had been reduced to hours…I knew that her little body could no longer fight whatever infection was raging in it. Her temperature was off the chart… the thermometer only registers temperatures up to 106 °F (41.5 °C) and then goes onto “HI”.
It was this time, three months ago, that Vic’s breathing changed. Three months ago it was Vic’s last night of breathing.
Earlier that day I fell asleep next to Vic – my hand on the pulse in her neck. I was so exhausted I could not think or function. I just needed to be with her every second of her last hours.
The boys came to say their goodbyes…
I no longer allowed visitors.
I remember lying next to her recalling a discussion we had when I had flu and was running a fever. I am a terrible patient. I am such a ninny. I remembered saying to Vic “Sweetie, when I am dying please don’t let people touch me…”
“I won’t” she promised. “My skin also hurts when I am running a fever…”
“Why didn’t you tell me? It must irritate you when I stroke your hand or hair when you are sick?”
“Because I know you need to touch and hold me when I am sick…” she said.
“I will never to it again. So next time you are running a fever know I want to hold your hand and stroke your hair…”
“It’s okay Mommy. You can hold my hand. I don’t mind. It hurts but makes me feel better…”
“That’s an oxymoron if I have ever heard one in my life!” I laughed and Vic joined in
That night, three months ago, there was no idle chatter or laughter in the house. Just the sound of Vic’s breathing.
Tonight, three months later, everyone has gone to bed. There is no sound of laughter or idle chatter in the house. Earlier tonight there was.
I keep imaging that I am hearing Vic’s footsteps shuffling down the passage. The boys have lit extra candles for their mom. I know that they are sad.
I am aware that the dynamics of my grief is changing. I am starting to function, smile and look “alive”. The numbness has gone. The pain is real now. My sadness is constant. I go to sleep with tears in my eyes and wake up with tears running into my hair. My grief has become “mine”. It has become a constant companion. I do not want to share it. I want to embrace it.
I know there is so much to be grateful for, I know I wanted Vic’s suffering to end, I am grateful that she is no longer fracturing vertebrae from vomiting, crying with pain… I KNOW all of this on an intellectual level. I try to tell my heart to be happy or at least grateful, but my heart won’t listen!
I don’t want to sleep tonight. I want to lie awake and remember my beautiful baby girl, her warm smile, her tiny little hands and her pure soul. If I fall asleep I pray that I will dream of my baby girl…
We were one
I had my first counselling session with the Hospice psychologist. It was terribly difficult and emotional.
So often when Vic and I chatted Vic would say “I am so worried about you Mommy…”
In November last year when Dr Sue, Vic’s palliative care physician, broke the news to Vic that her organs were failing Vic’s first words were “Oh Mommy, I am so worried about you – How will you cope?”
When our housekeeper went on leave late December, Vic said to her that they would not see one another again…that she was dying…. Vic asked our Betty to look after me because she was worried about me…
My standard answer to Vic was “I will be okay baby!”
Vic would say “I know, but I worry about you. Promise me you will see someone professional after I am gone?”
“I will be fine. I will be grateful that your suffering is over…But I promise I will!”
I did not know what I was talking about when I said I would be fine… Vic knew me better than I know myself. Nothing could have prepared me for the tsunami of grief that hit me, the void in my life…
So I walked into Alan’s office this morning. I noticed the strategically placed box of tissues, the crumpled ones in the little wastebasket next to the chair…I crossed my mind that he only deals with grief.
We spoke briefly about the boys, but Alan firmly said that today we would focus on me…
I bravely started talking without waiting to be prompted. After all, that is why I was there.
“I knew that I would miss Vic after her death but nothing could prepare me for this” I said
“Vic was diagnosed with Osteogenesis Imperfecta at 18 months. The doctors said she would not live to be older than 12 years.”.
I spoke clearly and succinctly about Vic’s medical history. It was familiar territory. I have share this information with many doctors, research centres, medical professionals… I spoke about Vic’s blotched back surgery and the devastating effect it had on the rest of her life. I ranted about Drs S + V. I articulated my hatred of them, my anger at their arrogance.
I spoke at length about how I fought doctors, tried to find solutions, cures… How I would not leave Vic’s side when she was in hospital or ICU. I told him about the ventilator been switched off and Vic starting to breathe on her own again…
I sobbed my way through Vic’s uncontrolled pain; the doctors telling her that she was a morphine addict…The doctors refusing her adequate pain control post-surgery because of her so-called morphine addiction…
I battled to tell him of Vic’s incredible will to live – sobs wracked through my body.
I share with him my guilt at being the one who administered her sedation at the end of her life. It took me a couple of minutes to get Vic’s final words of “Mommy, I love you…” out.
I saw Alan look at the clock on the wall. I knew our time was almost up.
He sat forward on his chair, his elbows on his knees. His voice and eyes were gentle with compassion.
“Tersia, it is normal to grieve. Vic has taken up all your time and energy for 38 years. You never separated from her. In your mind you were one…”
That is so true. That is why I feel as if part of me has died. Vic and I were so close. She always remained my baby girl. I never became Ma, Mom or anything but “Mommy”.
On the 9th of October 2012 I posted these words
As a family we have lived with Vic’s pain and her excruciatingly slow journey towards death for the past eleven years. For eleven years we have heard her scream with pain, moan with discomfort, we hold her hair back when she is doubled up over a toilet bowel, vomiting until she fractures a vertebrae. We have nursed open wounds, changed colostomy bags…. We have watched our daughter and mother suffer the most horrendous symptoms.
So baby, if you read this post, know that we will miss you. We don’t want you to leave us behind, but we want your suffering to end. We will continue to love you until we are reunited one day. You have to trust us that you will always be “my baby” and the boys’ mummy. But know that we will be grateful when your little body is freed from its pain and suffering. You will be at peace… You will not suffer more pain after death. We will mourn you, but we will also be at peace… We will think of you and smile…
It is okay to let go my angel child.
Vic and I discussed this post… We cried then, and I cry now.
I pray that I will find peace.