Tag: Osteogenesis imperfecta
Vic succeeded at life…
Vic often said “I must be such a disappointment to you. I have done nothing with my life!”
This morning I read these beautiful words and so wished I could have shared it with Vic.
“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded
“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley
To laugh often and love much – That Vic did. She always had a smile on her precious face. Even when she was in dreadful pain she would try to smile. When she was in a lot of pain her laugh was shrill. Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.
“That is terrible Mommy. Why?”
I felt like hitting my head against a wall! What did the child think? In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag. It was too big and positioned very low down.
“I worry about you every second of the day baby. I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything… I worry about your wound. I worry about your pain control….”
“Mommy, that is so sad. At least once a week the boys and I laugh so much that my tummy hurts from it…”
Vic in 2007
Vic loved unconditionally and with every fibre of her body. She gave everything! She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys. She LIVED love.
Her last words ever were “I love you Mommy”
… to win the respect of intelligent persons and the affection of children; Worldwide, intelligent people, respected and admired Vic for her courage, tenacity… We called Vic the “baby whisperer”. Children loved her. She loved children. Her only ambition as a toddler and teenager was to be a Mommy. She loved her sons beyond comprehension…
The Baby Whisperer
…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life. People got tired of waiting for her to die. “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable. False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.
….. to appreciate beauty; to find the best in others; My precious child was so naïve. She refused to see the bad in people! The only time she got irritated and miserable was in hospital. She always found the good in people. She did not speak badly of people. When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge. Vic taught me unconditional love, forgiveness and tolerance. Vic brought out the best in me and the most other people.
…..to give of one’s self; Vic was a people pleaser. She would turn down MY bed!!!! She made sacrifices for each and every person in her life. Even in death she worried about other dying people who were less privileged than she was. I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice! She kept talking to me about Stepping Stone until she lapsed into a coma. We started on the 1st of January 2013 and Vic died on the 18th of January. Our first patient. Our first death.
…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place. Her sons are monuments of the person she was; her dream of a Hospice has been realized.
……to have played and laughed with enthusiasm and sung with exultation; With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.
Vic loving World Cup 2010
……to know even one life has breathed easier because you have lived Vic’s legacy will live on through her sons and Stepping Stone Hospice. Long after I have died, people will continue to benefit from Vic’s dreams and goodness.
—this is to have succeeded.” My angel child – you succeeded! You succeeded in life and with living. You made the world a beautiful place filled with goodness and hope. I am so proud of you. You lived life to the full. You made a difference! You lived a greater and more successful life than most people. You have put the world to shame. You are my hero!
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.
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…
Daddy don’t leave me…. 12.1.2013
A year ago I posted this. Yesterday we had visitors. We swam; the grandchildren laughed and joked, played hide and seek; we ate spaghetti bolognaise and ciabatta. I sat looking at all the happy faces and remembered Vic clinging to Danie. I remember the fear in her eyes. Her desperation. Her final Sunday.
Vic was desperately trying to finish the cards she had bought the boys. She wanted to write the perfect words. Words that would reach out to her boys from the grave. I remember my fear and frustration. Frustration that the cards had not been written and fear that it would not get done. So much pressure in death…
Tuesday brought an avalanche of visitors. It was a very, very emotional day. Vic was confused and seeing visions of angels and dead loved ones.
Vic’s friend Angela has been absolutely amazing. She has sat through many hours of Vic’s tears and fears. She has consoled and supported – at great personal expense. I have used Angela as a sounding board and dragged her into discussions with Siza. I discussed sedation and treatment options with her. She has hugged and messaged. She has been a pillar of strength.
Leigh, Jared BFF’s Mom, walked in on Tuesday with armloads of flowers. Vic’s room looked and smelled like a garden! It looked absolutely beautiful and Vic was thrilled.
Vic has refused to let go. She is holding onto life with every fibre of her being. She does not want visitors to leave and will try to get out of bed when they are here.
She cries and keeps asking “How do I say my final goodbyes?”
Esther visits every day. She picks up the boys after school. She is Vic’s guide. “Go towards the light. The light is good!” she keeps telling Vic. Esther is a ray of sunshine and like the Rock of Gibraltar. She is Vic’s sister in love.
It is heart wrenching!
Vic clings to her dad and the boys. She puts out her arms and says “Daddy don’t leave me…” When she sees her boys she cries “Please give me a hug…” and then “I love you more than life and then some more…”
I hate my life. I wish I were dead.
We need a miracle again….
Sr Siza examined Vic today. She phoned Dr Sue who will be in tomorrow morning. She also brought a script with for Dalacin antibiotics. The cellulitis has spread to all three the subcutaneous sites.
Siza expressed her concern at Vic’s decline…
Last Friday Danie, my husband, came and sat next to me and said “I know everyone says it will be better for Vic to die than live in this pain but I was thinking how hard it will be for us without her…”
That statement really shook me. Up until now death has been a hypothetical issue… Doctors diagnoses and prognosis…predictions… I have never really considered living without my child.
Last week Siza and I met with the CEO of Amcare, a large community project that provide community based feeding schemes, HIV/AIDS Counselling, Home-based care, skills development, ARV Clinic, women and children shelters. We are hoping that they…
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A Poem About a Mother’s Love for Her Very Sick Child
I know that I would do all things for you.
My spirit would always take care of you.
And when I die and leave this world behind.
You can be rest assured that my love will stay behind.
Even though sometimes we’re far apart.
You have always remained right here in my heart.
I will forever whisper in the wind
Unconditional love that’ll forever stay within.
If only I could go wherever you go
So I could do things I need to do for you.
Since I can’t, the best sacrifice I can give
is keep you in my heart and allow you to leave.
I’m lifting up the burden in your heart
‘Cause I know that you don’t know where to start.
I’m transferring all the pain inside of you
Into my care, into my heart, and now it’s through.
I love you so much and I know that I can bear
This greatest pain to let you go, I swear.
Know in your heart that my love will forever stay
Even though I would seem so far-away.
I’ll be your strength that’s why I’m relieving you
Of all the pain and tears inside of you.
No need to worry for all your pain will be gone.
It will be with me now, and I shall carry on.
You may think I’m letting you go without a fight.
If you only knew how I fought for you each night.
Just remember that there are signs everywhere.
So look around and acknowledge that they are there.
God said to me that love will always prevail.
And each day there is a tale for you to tell.
If you could already see the signs before your eyes.
Embrace it now. Let it stay. It is your guide.
God said the signs may be a word or two
When you least expect it, it is said to you.
It may also be the people that you have met.
Places, names, or things that you kept.
God told me to tell all these things to you
So happiness would set in and peacefulness, too.
I’m always here, and I’ll always love you.
I never wanted you to be in pain. It’s OK for you to go.
A gentle death…
A gentle death, when comfort, caring, and presence are priorities, is invariable a death at home or in the peaceful surroundings of a Hospice In-Patient Unit. The opportunity to have your loved one drift away peacefully, in the comfort of their own home, in their favourite bed or in your arms, with their loved ones there at their side, is truly a gift of immeasurable worth.
Too often doctors keep treating the actively dying person aggressively. The ill person accepts the aggressive treatments doctors keep piling on them even though there is no benefit to be derived from it. At this stage of the terminally ill patient their medical care controls their lives. Pain, NG tubes, stomach tubing, IV tubing, catheters…. They remain hooked up to all sorts of beeping, pumping devices until the bitter end. We are conditioned to accept aggressive life-prolonging treatment that often destroys our family’s financial stability and quality of life.
This is what the medical profession is trained to do. To heal…
It is so hard to die with all the medical technology and treatments available. People no longer die of heart attacks. People go onto preventative cholesterol and blood pressure treatments. They become old enough to develop Alzheimers…
What changes have occurred which mean we are now living longer than previous generations?
During the twentieth century, life expectancy rose dramatically amongst the world’s wealthiest populations from around 50 to over 75 years. This increase can be attributed to a number of factors including improvements in public health, nutrition and medicine. Vaccinations and antibiotics greatly reduced deaths in childhood, health and safety in manual workplaces improved and fewer people smoked. As a result of this – coupled with a decline in the fertility rate – many major industrial countries are facing an ageing population.
According to UN statistics for the period 2005 – 2010, Japan has the world’s highest life of expectancy of 82.6 years followed by Hong Kong 82.2 years and Iceland 81.8 year). The world average is 67.2 years and the UK average is 79.4 years. The average South African is expected to live to at least 60 years, an increased figure when compared with the 2005 figure of 53 years. .
During the Roman Empire, Romans had an approximate life expectancy of 22 to 25 years. In 1900, the world life expectancy was approximately 30 years, and in 1985 it was about 62 years, just five years short of today’s life expectancy.
Why are we living longer? Well in South Africa or even Africa it is because of revised HIV Anti Retro Vital policies. HIV has become a chronic illness. It is no longer a life-threatening illness. As long as you take your ARV’s you will be fine!
Improved food packaging and an increased awareness of the nutritional value of food have led to healthier lifestyles. Increased fitness levels and the reduction of smoking have also paid a major contribution in increasing life expectancy world-wide.
Adverts on buses and tubes inform us of the importance of washing our hands and covering our mouths when we cough or sneeze in order to reduce the spread of illnesses and diseases. Health and safety legislation provides strict regulations for hygiene in restaurants, hospitals and factories.
This is great but we have an increasing older population suffering from diseases like Alzheimers and Parkinson’s. I don’t believe that it is the environment or lifestyle that has led to this. Years ago people simply died younger… Our grandparents were OLD at the age of 60. Now 70 year olds have knee replacements and still play sport.
Vic was diagnosed at the age of 18 months with Osteogenesis Imperfecta. At the time it was a death sentence. I remember the professor telling us that she would not live to the age of 12.
We celebrated her 12th birthday, her 16th, 18th, 21 and 30th birthdays…We celebrated her 38th birthday. Every birthday from her 27th birthday became more difficult. The doctors and I fought to keep her alive.
Keeping her alive came at a price. Eight one (81) abdominal surgeries, literally years in hospitals, pipes and tubes in every orifice of my child’s little body, prodding and prying by strangers hands. She was stripped of her dignity. At times litres of faecal matter poured out of her intestines into bags and bottles….She had to drink revolting liquids, tablets crushed and vomit until she fractured vertebrae.
Why did we not allow her to die with dignity? Why did we fight for her life? Why did we sentence this poor child a violent life filled with suffering and pain? Because I was selfish. I drilled fighting and survival into her little brain from the age of 18 months. Vic did not know how to not fight.
The greatest gift I ever gave Vic was to respect her wishes and allow her to die. It was the most difficult thing I have ever had to do… Retreat and not fight!
St. Francis of Assisi portrays death as “kind and gentle” in the hymn “All Creatures of our God and King”. This is certainly a minority view in our culture and faith. It speaks of a familiarity with death that seems to have been more prevalent in previous generations than it is today. Society sanitizes death. In a culture devoted to the avoidance of suffering, a culture that lives as if this life were all there is, it’s not surprising that we relegate death to the morticians. Morticians do the final honour. They wash and prepare our dead for the last time…
We avoid the sick and funerals. We relegate our dying to a noisy hospital room with beeping machines and staff on a schedule. No gentle music and candles – just harsh hospital lights and a lot of noise 24 hours a day. Hospitals are not trained in palliative care – only curing.
When someone is dying, everyone has to wait. It takes time. All of us have a different timetable. Some wait mere hours. Some drag on for days, others, weeks. It is a lesson in patience. And it is a time when “being” edges ahead of “doing”, and just being present your loved one’s bedside is seen as the ultimate act of service.
We must allow our dying and infirm to die a gentle death. We must HEAR what they are asking! Are they ASKING for more invasive treatment or the right to die a gentle death?
Five months and 7 and a half hours ago I allowed my most precious child to die a gentle death. If I had not ignored her wishes her suffering would have ended many years ago. I have to live with this.
Rose of Kindness Award
Today I stumbled across an amazing blog. It is a blog about kindness…. http://kindnessblog.com
Please pop in there. Let’s all think about “kindness” and make it our goal to perform just one special act of kindness every day! It has to be a special act of kindness that actually takes an effort.
Vic was a kind and generous person. Her legacy is one of kindness and generosity. So I have come up with an award… The Rose of Kindness Award. I would like to add that we need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someone’s out there that you love, don’t neglect that and don’t put off engaging with them because death waits for no-one… Be kind and gentle. Cherish your relationships remember to be kind…. Pay it forward!
Rules of the Rose of Kindness Award
- Add the Rose of Kindness Award on your blog
- Thank the person who nominated you and link back to their blog
- Nominate 13 (my lucky number) bloggers whose kindness you have experienced
- Post why you are nominating each of your nominees
- Let the nominees know that you nominated them
- Suggest one special act of kindness that the world may benefit from
So I have to nominate some kind people.
- My treasured friend, Sandra @ http://thedrsays.org/, who is terminally ill and yet has so much kindness in her heart that she still reaches out to me and other people. This brave and selfless woman has made a difference in my world. She worries about her loved ones that she will leave behind. Thank you dear friend for caring when you have so much to deal with! You are always in my thoughts and prayers!
- http://behindthemaskofabuse.com is a heart wrenching blog about a woman’s life of abuse. She was raised by a narcissistic father, and a mother who rarely protected her from his verbal, mental, emotional and psychological abuse. She endured molestation, both inside and outside the family setting, raped at the tender age of 11 years old. This blog is written by an amazing person. A strong person battling recovery, anger and betrayal. She battles C-PTSD and BDD. Out of her pain two books were born and are published on Amazon “Buckwheatsrisk-Abuse Survival”, and a poetry book entitled “If I Could Write my Heart.” I salute you dear friend for your resilience and kindness. Out of your hardship a beautiful kind and caring human being was born. Thank you dear friend for the kindness you have shown!
- http://idealisticrebel.wordpress.com/ – Rebel is amazing and takes on the world! A kind and brave blogger who fights to make the world a better place. Rebel is a kind and generous friend.
- http://jmgoyder.com/ – My precious friend Julie who has so much pain and loss to work through. Julie writes about the love between her and her ailing husband. It is the most beautiful love story ever! Julie is kind and caring. Thank you for your loving kindness dear friend!
- http://valeriedavies.com/ A gutsy, wise lady who is a friend and an amazing writer. Thank you for your love and support.
- Judy is my dear friend who has guided me through this abyss of grief that I am walking…http://myjourneysinsight.com Judy reaches out to grieving parents. She offers guidance, advice and love. Thank you dearest Judy for your kindness and friendship.
- Shirley @ http://justiceforraymond.wordpress.com is a true warrior, fighting for justice yet always ready to extend a hand of friendship and support. Shirley taken on the judicial world to bring justice to the unsolved and uncleared and uncared for deaths. Thank you dear Shirley for your words and actions of kindness.
- Len @ http://myownheart.me is a precious friend who always has a kind word of support. Despite her pain after the tragic loss of her precious Klysta Len reaches out a hand of friendship with words of kindness. Thank you dear Len
- This wonderful woman has 1077 followers and yet she has time to read my blog, comment and encourage. Her words of advice are filled with compassion and kindness. Thank you dear Diana http://talktodiana.wordpress.com/
- Katie Mitchell who suffers debilitating pain yet this brave young woman has made it her mission in life to educate the world on Connective Tissue disorders. Vic suffered from Osteogenesis Imperfecta, a connective tissue disorder. Katie is a kind and gentle person –very worthy of this award. http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water
- Shaun @ http://prayingforoneday.wordpress.com/ is a kind and cherished friend. I sometimes feel bad because I know I cause him pain because of my grief. He reaches out wanting to make my life better. Thank you dear, kind friend. I know you don’t accept awards anymore so I truly understand if you don’t accept.
- http://kindnessblog.com/ I would be remiss to not award the blog that inspired this action. Thank you for the goodness you radiate in your blog. I could not find your name anywhere but I hope you will accept.
- Terry @ http://terry1954.wordpress.com/ is a kind blogger who cares for her brother deeply and passionately. She is a shiny example of how we should treat our fellow human beings and family – with kindness!
- An extra nomination – My beautiful, brave child who radiated goodness and kindness, this award is for you! You made the world a better place. I am proud to be your Mommy. This award photo is of the rose we planted at the front door…I love you angel child.
My suggested act of kindness: On Mother’s Day and Father’s Day, remember any friends who have lost a parent the previous year, and check in with them. Those will be tough days.
Lets start a wave of kindness!
I often wondered exactly what went through Vic’s mind in the final months of her life when she felt death sneaking up on her. I know she was scared and lonely; she was heartbroken knowing that her boys would grow up without her….I am not stupid. I know that Vic did not share all her fears and thoughts with me. She was trying to protect me.
Today I read a bittersweet post. I wept when I read the words. It was as if I heard Vic’s voice…felt her fear…
Bittersweet June 4, 2013 by sugarmagzz | 6 Comments It happens from time to time, I get a glimpse of my “old” life and for a fleeting second forget that I am dying of cancer. These moments are simultaneously wonderful and devastating. I might be out with a friend for lunch, pumping gas into my car, shopping for Owen, or doing dishes at my kitchen sink. It’s always random and for that brief moment I feel free, as though I’m flying and nothing is tethering me down. I feel like I did before, able to live my life without a shadow cast overhead. It doesn’t last very long because reality always comes crashing down, dragging me with it in its vice-like grip. In this moment of clarity — when it all comes rushing back to me — I can’t breathe. I’m ten again and I’ve fallen flat on my back off the trampoline — immobile, breathless, terrified. This time there is no ground to break my fall, and so I’m left to kick and scream in mid-air with no one to hear me, no one to catch me. Alone and falling, falling so fast — past the memories that were supposed to one day be mine. I reach out to touch them and slide my fingers over their sparkling surface… The look on Owen’s face when he sees Disney World for the first time. The birth of our second child, to see again Andrew’s incredible capacity for the patience and self-sacrifice of fatherhood. Owen’s high school and college graduation ceremonies, his wedding. Ashlei’s wedding, the birth of her children, becoming an Aunt. Retirement — relaxing on the dock looking out over the lake with him, my partner in life…reminiscing about the early days and arguing over chores, still. Grandchildren. I will not see these momentous occasions, they will occur without my physical presence. I hope that there is more to this life, and that I can be there in some way, spirit or otherwise. I hope that my loved ones will always feel me near as they celebrate those unforgettable moments that life has to offer, but my sorrow at missing out on them is endless. I am so very grateful for the incredible moments I have been blessed to experience and I will hold them close until the end. When my time comes, I will take my last breath knowing that my time here was extraordinary, that during my brief existence I lived and loved as greatly as I could. I know there will be more wonderful memories to make before this happens, but everything for me is tinged with darkness — all of the good moments are bittersweet. Still I fight for them, even though they are broken and imperfect. They may not be the memories I thought they would be, but they will still be special.
Tonight I am doubting myself again. I wonder – did I comfort my child enough? Why was this precious child of mine condemned to a life of horrible pain and suffering? She never truly lived! Why did she die and bad people continue to live and prosper? Why was she deprived of a future??? She was such a good person!!!!!
I want to hold her and protect her. I want to tell her how much I love her. That she is the best thing that ever happened to me. That my life is empty without her. That I understood her fears.
I WANT MY CHILD BACK!!!
I WANT MY CHILD BACK!!!
Yesterday morning I teared up – again. Danie asked “And now? What’s wrong?”
“Just missing Vic” I said
“Shame” he said with sadness in his voice. “I miss her too”
We spoke about how my grief had changed over the past four months. Today it is exactly four months since my precious child died. I keep using the words “death and died” and not the gentler “passed”… I do that because death is harsh. My child DIED, she is DEAD. My pain is as real as it was 4 months ago. My grief is however no longer as transparent as it was to the world.
Four months ago when Vic died my body physically hurt. My heart was physically aching. The pain was new. Now my grief is in me, part of me as if it is a limb or organ… My grief is hidden from the world. If I did not tell you, you would never know.
To the world – I seem to have adjusted to the loss of my child. I am “functioning, smiling, carrying on with life”… People are so relieved that they no longer have to cope with my raw grief…
Earlier tonight I read this on Facebook –https://www.facebook.com/TheGrievingParent
“I never knew my mind could be dominated by a single thought every day for years and still not get in the way of the progress of my life. The hands on the clock continue to turn, and the sun rises every morning.
Even though the grief is not on the surface, the missing is as strong as it ever was. We can’t explain it, but we want to share it. We might not break down, but the strength of the grief never fades.”
We just keep on living with it and do the best we are able to do.”
I miss Vic more today than I did four months ago. I keep looking at photographs of the past couple of years so I can REMEMBER her suffering; I re-read my blog to REMEMBER her suffering; I keep trying to find solace in the fact that she is pain-free. It is becoming more difficult to see the positive side of Vic’s death. My mind is blocking out the horror of her suffering! I am remembering the good times only.
I hear you say “It is good” No, It is not good! If I forget her suffering I will never accept the “need for her to die” element of Vic’s death.
My sister shared her heartbreak with me…She said that one night when she slept with Vic she woke up to hear Vic talking to me. She said Vic was crying and saying “Mommy I am so sore. I can’t do this anymore” Lorraine said she kept her eyes shut and pretended to sleep because she could not deal with the moment… Why am I forgetting?????? On the 13th of November I posted “Will my poor baby’s hell ever end? If there is a lesson to be learnt PLEASE God show me what it is so I can learn it!! This has come to an end!” https://tersiaburger.com/2012/11/13/signposts-for-dying/
I want my child back with me. I want to hold her, tell her I love her. I want to hear her footsteps in the passage; I want to hear her voice…
I WANT MY CHILD BACK!
“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.
Today I read a very moving eulogy that Denise, one of my blogger friends, posted. It is a eulogy that she wrote and presented at her beloved son’s funeral.
I identified with her emotions and every word she wrote. I would like to share Denise’s words with you and also my eulogy with which I honoured my brave child.
Denise says:” I’ve added a page with Philip’s eulogy. It was my last gift to him. As I wrote in the introduction, I’m posting it so you can know him a little better. I’ve just re-read it, and I remember reading it out loud, with Phil and Natalie beside me. I remember that I’d spent the last two hours in my chair, non-stop sobbing. I remember my cousin Maria leaning over and saying, “If you don’t stop crying you won’t be able to read.” I remember my voice clear and strong. And when I was done, I remember being told, “I feel better because I know you’re going to be all right.”
Me and “all right” didn’t belong in the same sentence. But there it was. And here it is; I hope you’ll take a look.”
I encourage you to follow this mother’s harrowing journey with grief. Please read her Phillip’s eulogy! http://forphilip.wordpress.com/his-eulogy/comment-page-1/#comment-33
Much of the days, immediately after Vic’s death, is now a distant memory. The emotions that I did record are hazy now. I floated on a herbal tranquilizer cloud… I cannot remember who all was at the funeral. I remember who wasn’t… I looked at the January 2013 photos this week and saw that her second eldest sibling did come and say her goodbyes. I now vaguely remember her little girls being here, but I actually don’t remember!!
When Vic planned her memorial service she asked that I deliver her eulogy.
Friday, Saturday and Sunday after Vic died I cried and was unable to think straight. I wanted to do the handouts myself but by Sunday evening I knew I would not be able to do it in time. My mind was blank, and I could not get Microsoft Publisher to do what I needed it to do… At 8.15pm I texted the undertaker and asked them to do it. I would send them the content, and they would format my information.
I prepared a wonderful slide show of Vic’s life. All the fun bits and the people she loved were in it with her. All the highlights of her life were captured in PowerPoint. “Never Alone” as performed by Jim Brickman and Lady Annabella would play as her coffin was carried out of the church. “If tomorrow starts without me” would play before the start of the service. The slide show would loop from 15 minutes before the service and again 10 minutes after Vic left the church for the last time.
The eulogy and thank-you’s would be done by me.
Strangely the “thank-you’s” was far more difficult to do. There were so many people to thank that had loved, helped and supported Vic and the family over the years…
I actually don’t know whether I blogged on the service as such before, but if I have either forgive me or please move onto another post.
When I stood up to do the thank you’s and eulogy I thought “It is the 3rd eulogy in 18 months I am doing…”
As I stood up Vic’s boys got up and flanked me. They bravely and stoically stood next to me supporting me as we paid our last respects. I could feel their bodies tremble and occasionally I hear a stifled sound as they suppressed their tears.
We stood on the stairs below the pulpit. Three steps below us Vic lay in a casket. More than a hundred candles burning; her St Josephs lilies on the casket and a beautiful framed photo of her… I so wish someone has taken a photo…
Like Denise I was surprised by the clarity of my voice. It was as if my voice belonged to someone else. The steadiness of my voice belied the physical pain of my heart.
I said the following:
Where do I start? How do I begin a farewell when I still can’t believe you’re gone? How do I say goodbye to a part of my soul?
The day you were born I experienced this UNBELIEVABLE rush of love. I was smitten from the first second I lay eyes on you.
You came into my life and changed me forever. Over the years people have complimented me for being a good mother but I truly cannot take credit for that. You were born good, and great and amazing. You were the one who taught me lessons in life. I believe you are an angel God sent to teach me.
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.
When you were diagnosed with Osteogenesis Imperfecta at the age of 18 months and the doctors told me I should wrap you in cotton wool and wait for you to die, you taught me it was more important to feel and grow like any other child than to have me hide you under my wing. It was so important to you to live. And that you did. You gave birth to not one beautiful baby but two! You mothered the boys the way you lived life – with a passion.
You are the bravest person in the world. You rewrote medical history. You defied death for so many years… You mocked bad news and a poor prognosis…
You made me so proud. You have always been my greatest pride and joy. At school you excelled as a pianist. As a mommy you were an example to all. As a dying person you were brave beyond words.
I’m not sure how I can live this life without you. You worried about me just as much as I worried about you. You told everyone how worried you were that I would not cope without you. You fought so hard to stay alive. You fought until you gave your very last breath. You did not want to leave your boys. You lived for your boys.
You often said you were scared people would forget you…
No-one will ever forget you. You made an incredible impact on the world. You left two monuments of your love and mothering skills. Your sons will honour you every day of their lives with their actions.
Your dream of a Hospice for Alberton has been realised in Stepping Stone. Thousands of people will benefit from your dream and compassion in years to come. It is ironic that you were Stepping Stone’s first death…
Two weeks before your passing you started seeing angels. You saw Gramps, Uncle Dries, your father and Auntie Marlene. Then a week before your passing you said “My whole room is full of angels” You fought to stay alive every single day of your life. Eleven months ago you called a family meeting and told us that you had decided enough is enough. No more surgeries. No more hospitals.
Over the past 11 months you made your final wishes known. You planned your memorial service. You spoke to the boys about what was important. I personally got a long list of do’s and don’t’s.
Just before Christmas you said you were worried about me. That you could see I thought you would bounce back again…You said you were dying…You could feel the changes in your body. But like 95% of the people in this church today I honestly though you would bounce back and defy death once again!
The day you were born you filled my entire life. You were always my first and last thought. I feel numb and as if I am in a bubble. You will be happy to know that we have been surrounded by love and support. But it still feels as if the world should have stopped because you left it.
Vic, I miss you so much already and I don’t know if I can take this pain anymore. But then I think, how can I be sad when I know you’re in a better place? How can I be sad when you brought me so much happiness? How can I be sad when God is already working miracles through you? How can I be sad when I feel like the luckiest person on earth to have been chosen to be your mother? How can I be sad when God gave you to me for 14,019 days, 20 hours and 15 minutes? I thank God every day for the time we shared together.
Baby, I promise you today we will be the support system for the boys you wanted. We love them so much. No-one in the world can ever take your place. We promise we will keep your memories alive. We will honour our promises to you.
So now we must bid you farewell. It is your time to run, free from pain and suffering. We will always love you. We will never forget you.
Rest in Peace my Angel Child.
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.