I am a wife, sister, grandmother and friend. I started blogging as a coping mechanism during my beautiful daughter's final journey. Vicky was desperately ill for 10 years after a botched back operation. Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! 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 someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle 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…
I reblogged this. So often we use words without stopping to think that years later the words will still ring through the ears of the recipient…
When I first got married, and my ex-husband asked me for a divorce, he cited a couple of reasons for the request.
1. I was a great mother, career person, entertainer, friend etc but I was a lousy wife
2. He thought I was ugly
Now I know there was a certain amount of truth in the statement. I knew that I was not focused on his needs quite as much as his mistress was. But, I also knew, in my heart that, although I am not an oil painting, I was reasonably attractive in my own way. Some people have even said I am pretty.
The fact remains – when I look at myself in the mirror I see what he saw. When Danie and I have a disagreement he agrees with his predecessor. Other days he will tell me I am beautiful. Then I agree with his predecessor…
It is true that beauty is in the eye of the beholder.
It is also true that harsh words will never leave one’s head. I still hear his words 34 years later!
Let us remember that words destruct and destroy. Words can never be taken back. Hurt lingers on…. Let’s be gentle!
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…
June 4, 2013 by sugarmagzz | 6 CommentsIt 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.
This is a very emotional time in all our lives. It is 8 weeks and 2 days since Vic died. We have all lived on our nerves for a long time and although we thought it would be a relief that Vic’s suffering was over, the grief has been overwhelming. Not only for the boys and I but also others that loved Vic…
I know the family is concerned about me. I know their concern stems from love.
I however need to blog. I need to hear from other bereaved parents that I am not going mad. That my grief is normal and that it is okay to grieve for my beautiful child.
I have subscribed to several blogs or sites for bereaved parents and it is not working for me. It is other parents words.
I will however borrow these words from another grieving parent
I would like to share with you my pain but that isn’t possible unless you have lost a child yourself and that I wouldn’t want you to have to experience. So with that being said, I would like to say this. I will try to my best to understand you if you try to understand me. I lost my child. My life will never be the same. I will never be the same again. I will be different from now on. I no longer have the same feelings about anything. Everything in my life has changed from the moment my child left to go to heaven. I will, on some days be very sad and nothing you say will changes that so don’t feel like it is your job to make me feel better on those days, just allow me to be where I am.
When you lose a child you not only lose your reason for living, you lose the motivation to go on. You also lose your sense of self. It takes a long time to come to some kind of understanding for why this has happened, if ever. Of course we who have lost children know we have to go on but we don’t want to hear someone else tell us too. Especially from someone who has not lost a child. It makes me and anyone who has lost a child want to say who are you to tell me that? Did you bury your child? I don’t want this to sound like I don’t appreciate everything you say because I know you mean well, but I just want you to appreciate where I am coming from too. I want you to understand that some of the things you say hurt me and others like me without you really knowing it. I know it must be pretty hard to talk to people like myself, not knowing what to say. That is why I am writing this letter.
If you don’t know what to say, say nothing or just say I’m sorry. That always works for me. If you want to talk ad say my child’s name feel free I would love to hear his name anytime. You not saying his name didn’t make me forget it, or what happened to him. So by all means say his name. When special dates come or holidays come please forgive me if I’m not myself. I just can’t keep it up on those days. I may wish to be by myself so I can think about my child without putting on a front. Most of all I want you to know I’m having a hard time with the death of my child and I am trying my very best to get back into life again. Some days it may look like I have accomplished that, and other days like I am at square one.
This will happen the rest of my life periodically. There are just no words to explain the living hell this feels like. There are no words that could ever do it justice. So please bear with me and give me time and don’t put your own timetable on my grief and let me be the person I am now and not have to live up to the person you think I should be. Allow me my space and time and accept me for me. I will try my best to understand you.
So, if you are going to read my blog read it through my eyes and see my heart. If you are unable to handle the rawness of my words know that you are reading my soul. Remember that I don’t easily verbalize my emotions and this blog is my coping mechanism.
I have found hundreds of notes and journal entries in a file called “Our Story.” Vic loved my blog and wanted me to share “Our Story”. It was her wish. I will continue to do so.
So, love me in my time of sorrow and allow me to cope whichever way I can…. I love you too and appreciate your caring.
On our way to Hospice Jon-Daniel sat with his arms crossed muttering “I don’t need to see anyone” under his breath. “I am like you Oumie. We don’t talk…”
“Yeah” I said. “But I really think the time has come for us to talk to someone. Besides it is part of the Hospice thing. We have to do it!”
“The whole day I was thinking of shrink jokes” Jared said. “Do you think I can ask him ‘how does this make you feel?‘”
We all laughed.
“Guys if we don’t talk to the counselor we may have to come back…. Let’s answer all the questions and get it over and done with….” I cautioned
Alan is a short young man. I think he is in his early thirty’s. We shook hands and he asked us how we wanted to “do it?”
The boys went in on their own. I sat in the waiting room saying a little prayer that they would open up to this professional stranger who is an expert in dealing with death. Thirty minutes later I was invited in.
“The boys tell me they are coping well. They don’t see the reason for seeing me…..What do you think? Are you guys coping?”
I was truly taken aback. “Yes, I think we are coping. ”
“So Tersia, why do you think the boys need to see me?”
I did not speak for a couple of minutes. I was grappling with my brain as to how much I should tell this stranger.
“I think the emotional roller coaster is getting to us. We have said our goodbyes so many times and Vic always bounces back!” I eventually said.
“Yes, Jon-Daniel said so” Alan replied.
“I worry that the boys live in a home where death lingers. There is not enough laughter in our home. It saddens me when they stand next to their Mom’s bed and I see the helplessness in their eyes!” I mused
“I get impatient with Vic. When she has half a breath she will organize a party. When the pain medication works she will not pace herself. She will hurt herself and then I have to pick up the pieces. Sometimes I am scared that her suffering will not end. ” I continued.
“What type of party will she organize?” Alan asked.
The boys and I laughed!
“It is only a figure of speech….” we explained. “She will try and do things with the boys and hurt herself.”
“What type of things?” Alan asked
“Drive and take us for a milkshake” Jared replied.
“Mom forgets things and she thinks we are all against her… Yesterday she said to me that I must not feel guilty if she dies and I am cross with her…Mom always thinks we are fighting with her….” Jon-Daniel said.
“It is not about the final moments. It is not the final words or even the final disagreement. It is about the life and all the years of loving before death and dying…. You must not ever blame yourself for anything. Life is hard for all of you right now. It is okay to be scared and to get irritated. You must tell your Mom how you feel. I am not saying you must back-chat. What I am saying is that you must tell your Mom how her actions and illness makes you feel. The household consists of more than one person…. You all have the right to living…”
The boys asked to see Alan for another session…. Thank you God for another angel!
This morning, when I checked the BBM status’ of my loved ones, Jared had the lyrics to Linkin Park‘s “Skin to Bone” as his status. I did not realize that it was a song’s lyrics and wondered about the weird status. Normally his status says something like “I love my beautiful Jelly Tot” or “Kirsten, my one and only”
After school, while we were waiting for Jon-Daniel to finish cricket practice, he asked me whether I had heard the song, “Skin to Bone”, before. Obviously I hadn’t but even if I had, I doubt if I would have been able to distinguish the words from the loud musical arrangement….I am not the greatest Linkin Park fan in the world!
He spoke about the lyrics and I asked him whether the song reminded him of his Mom. He said “I suppose so. When I first heard the words I thought of Mom”
“Skin to bone“, represents her frail body to him. “Steel to steel” her steely hold on life! Her refusal to give up. “Ashes to ash, dust to dust”….. the inevitable
“The promises we made” I would imagine the promise that he envisages is the unspoken promise that a parent makes at the conception of the child….. to love and hold the child – until death do them part… The promise is not supposed to end in his early teens.
“Your deception, my disgust…..” relates to his feelings of betrayal. In a way he perceives his Mom’s ill health as a betrayal. His Mom is not supposed to be this ill and suffer the way she does. Vic was supposed to be a healthy Mom. Their lives were supposed to be “normal.” “My disgust” …. the despair of his life…..Anger for his mother’s suffering! Disgust with the medical system failing her. Anger for the OI gene. He is unable to understand all the “why’s”.
“When your name is finally drawn,I’ll be happy that you’re goneAsh to ashes, dust to dust.”
Jared absolutely adores his mother. He often says “Oumie, I don’t want Mommy to die.” I have however seen the sheer helplessness in his eyes when he sees her suffering the way she does. I know that Jared too longs for his mother to be at peace, without pain – Her spirit freed from her frail, pain wretched body. So my precious grandson joins the song and broken hearted sings along with Linkin Park
“I’ll be happy that you’re gone. Ash to ashes, dust to dust….”
This weekend I saw raw resentment towards me in my little girl’s eyes.
We checked into Hospital on Saturday morning at 08:00. Vic was seriously peeved that she did not get a private room as per the doctor’s instruction. Just to aggravate the situation the lady in the opposite bed was truly strange… She was loud and used bad language. She kept arguing with her husband, she would tell him to make a sexual departure, he would storm out of the room and she would shout obscenities at him.
Then she started telling us about this wonderful neurosurgeon that she works for. She and Vic ended up comparing back-op war wounds … Of course Vic won the contest hands down! Vic then said that she had decided no more surgeries…wow! Did this set the neighbour off! She took the moral high-ground and started telling us that we must have faith and God will heal Vic. Vic was in hospital because we keep asking God to heal her. We should only ask once and then have faith…
She laid hands on Vic when I went downstairs for a cup of tea. I would never have allowed it!!
Please don’t misunderstand me – I have nothing against religion. Religion is important. I do have a problem with a person who curses and swears and behaves in the most appalling manner and then think they can cure my child. Jared said to me today “Oumie, I don’t want to be a Christian like that …”
I do not stand in judgement of anyone. It is not for me to judge. I do have a problem with the ultra-religious people who judge others…surely that is the biggest sin? As my friend Marlene used to say “Who died that you think you became God?” If you are a Christian then surely you must believe that the blood of Jesus was spilt for ALL sinners and not only a select, elite group of Christians. If you disapprove of someone’s lifestyle or actions, condemn the sin and not the person…
People who claim to be “deeply religious” have turned their backs on their loved ones because of a lifestyle choice they made. They will not allow their own sons and daughters into their homes because they disapprove of the lifestyle choice. Yes, our loved ones make decisions that we do not condone or support but does that give us the right to turn our backs on them because of that? Surely love is unconditional? Through thick and thin?
I digress… Immediately after laying hands on Vic the lady swore at her son and made a racist remark… I suppose the Jesus she proclaims only died for white South Africans…
Jared sat at hospital with us all day Saturday. He is old enough to want to do it! That young man adores his Mommy. Jon-Daniel copes in a different way. He went to a private coaching cricket lesson at the Club in the morning and then went to Nathan, his best friend. Jon-Daniel makes Vic laugh. Jared makes Vic coffee.
Two different boys with two different ways of coping and two different ways of expressing their love. Yet united in their love and despair for their mother.
Vic ended up going into theatre just before 19:00 Saturday night…she was starving!! Poor little poppet! I was really annoyed that we had to wait from 10:00 to 19:00 to see the inside of the theatre. HOWEVER, this is where there is a twist in the tale…a second surgeon appeared in the waiting area and looked at the x-rays. He was most impressed by the complexity of the fracture…He is a humerus specialist who has in-depth knowledge and experience with Osteogenesis Imperfecta! I must add that he too had never had an OI patient as old as Vic. So Vic had two specialists operating on her little arm.
By 21:15 the anaesthetist came through to tell me the operation went well and that he was sending Vic to ICU – mainly because they are petrified of the high dosages of opiates that Vic is on and how it may counteract with the medication that Vic’s on.
History was made Saturday. A doctor wrote on Vic’s file “Mother of patient to stay with her”! In the past doctors would make U-turns in the passages to avoid me and here is this wonderful man telling the ICU staff “This mother must stay”. What a bright and intelligent young man he is even if he charged double medical aid rates.
Vic was however extremely angry with me because she was sent to ICU. Vic is petrified of ICU and does not appreciate that her pain control is so much better in there than in a ward. She cannot be given the amount of opiates that she needs, for pain control, out of ICU.
I am delighted as I told the anaesthetist that the Jurnista is new and although I did not give her one Friday night as I was scared that it may adversely affect the anaesthetic and post-op pain control. (Thank you Google for the fact sheet). When he said that it is better for her to go to ICU all Vic kept saying was “No Mommy, No Mommy!” She cried. I saw the resentment in her dark, sad eyes when she looked at me.
For once I did not care. I love my child and I will do anything and everything to spare her pain.
I have to find out which anaesthetic they used. The last two procedures at the Union resulted in terrible aggression in Vic. Vicky is normally a meek and mild little soul but boy, did she rip into me and her ICU sister. She told me exactly what she did and did not think of me. It was a horrific experience. I hope and pray that it was the anaesthetic and not actual resentment towards me that triggered her hate speech.
Vic ended up spending 2.5 days in ICU. I never left her side but to go shower at home and take Jared to the urologist this morning. The ICU at a standard hospital is actually not equipped to handle someone as ill as Vic and in such a pain control programme. I also think they were too scared to be left alone with her after the tongue-lashing she gave them whilst I was showering on Sunday morning.
Well this is now behind us. We will hope and pray that the sepsis in Vic’s abdomen and spine will not attack the pins in her arm. That Vicky will get better and enjoy some Jurnista quality of life!
I want to blog on ICU’s and what we subject our loved ones to next. I am just too tired and emotionally drained to even attempt it today.
It is 20:00 and Vic has been fed, changed, powdered and medicated. She screamed with pain when I changed her. Seeing my child sick and in pain, every day of her life , kills me. I am dying, painfully slowly from my child’s pain.
I don’t know how much longer I can handle this. The chronic pain I am used to but this new pain is pushing all of us over the edge.
Esther called today and wants Danie and I to go to a Spa, close by, and she and Tracey will take turns in looking after Vic… How nice is that!! But I cannot. I cannot leave Vic now. Nobody knows her body the way I do. It is too big a responsibility to hand over to anyone. She needs lots of personal help. Vic needs pain meds’ every four hours, day and night. If she misses med’s she breaks through her pain levels and then it is disastrous. What if she needs help during the night as she so often does? What if she vomits and needs me? No can do!! I cannot desert Vic. Until she breathes her last breath I will be by her side. No matter how long it takes.
Many years ago I promised Vic that I would not let her die alone.
When Jesus was praying in Gethsemane his disciples fell asleep on Him. I am so scared that I will fall asleep on Vic in her final hour. I don’t think Vic is near the end. I have been around dying people enough to know the signs. But she needs me now.