Somehow it seems to get harder as time goes by.
Reaching that “new normal” is done and dusted.
To the world I am “fine”. I am coping and made a resounding success of Vic’s dying wish… Stepping Stone Hospice is going from strength to strength. I however am more fragile than ever. I long for the day that I will see my child again.
I live for that day.
I am grateful for the boys and that they give me a reason to live.
I however feel more angry with the doctors and the medical world as every day goes by. With the knowledge that I have acquired through Stepping Stone Hospice, I have come to realise that Vic did not have a “good death”. At the time I thought I had done a good job. Now I realise that, in my ignorance, I failed Vic.
Vic wanted to die at home. I wanted Vic to die at home surrounded by her loved ones in the comfort of her own bed.
Today I know that it was not the “best” for Vic, me or the family. Firstly, I was Vic’s primary and sole caregiver. I did not have the luxury of mourning her final days as a mother. I was “in control”. I washed and medicated my child. I moistened her lips. I brushed her hair and changed her pj’s. I made sure that everyone got fed; that the household continued running, I continued to blog and journalise her final journey. I smiled at friends and family and encouraged them. I remember my despair at Vic’s fear (which I now recognise as terminal restlessness); the agony of whether to sedate her or not.
I remember very little detail of the last weeks. I do however remember the horrific exhaustion. I remember allowing Vic to remain in the same position for two days. Her Hospice nurse never told me how important it is to turn Vic every two hours… I thought I was sparing Vic pain by not moving her.
I now know I caused her pain and discomfort by not turning her.
A memory that will haunt me for life is the bruising on Vic’s body. (Blood coagulates as the body system slows down.)
Yet I function. I attend meetings; I run my home and Hospice; I laugh; I smile…And then I cry. When I am alone I indulge in my memories of my child. I look at old photos. I listen to old voice messages that I recorded. When someone walks into the room I will smile and act as if the world is my oyster.
Vic's Final Journey 
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wow – I am touched by your post. I have tears. I cannot add any more words!
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death is not the end of the road, we fear when we are uncertain, i have a picture on my blog, it’s from the sky, bless your compassion, amen
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Vriendin onthou wat jy eendag vir my gese het. Jy het jou beste gedoen vir Vickey. Ons het nie geweet nie maar dit was ons beste wat ons vir hulle gegee het. Lief jou.
Sent via my BlackBerry from Vodacom – let your email find you!
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Dearest Tersia, So sorry for my long reply – but here it goes:
You are such a compassionate person for others. It is common for someone like you to be far less kind to yourself. If you met someone who cared for their child with all the love and devotion you did, but simply did things without the knowledge you have now – would you berate them? Would you find what they did unforgiveable? That is how you are to yourself and you deserve more kindness.
Honestly, suffering in this world makes no sense. But one of my favorite mottos is: “Everything that I have gone through, led me to this place.” Vic’s suffering is over but she lives on through her courage in many other people, including you.
You have turned your suffering into being a remarkable woman, helping so many other people who treasure you. That is a result of your experiences, as horrible as they were. I look forward to when will not be suffering over what you consider “mistakes.” You have learned from them and Vic forgives you. She is holding your hand and shining a light for you.
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you would never do anything to hurt vic and i want to say that the days i am in pain, exhausted and just can’t move i appreciate that my husband doesn’t try to make turn over. on those days it would be too much. you treat vic with nothing but a mother’s love and care. she knows that and it grateful for your loving touch.
i can’t imagine what losing a child is like and know only that my heart aches for your loss. vic is/was an angel.
i am sending you my greatest wish for peace of heart and forgiveness for yourself and others. no one, including you could have stopped what was her journey to make. please just know that i sit with you and cry for what the world lost, but especially you.
i am not going to say that you will feel better with time as that is a lie. i am going to say that i hope in time some of this burden will be lifted from your heart.
xoxoxo
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Tersia, you were Vic’s angel (and she was yours). Thinking of you as you struggle with the weight of grief and I send you love. Jxxx
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But Tersia, you could only do the best you knew, using the knowledge you then had; it’s easy for me to say, perhaps, but you shouldn’t torture yourself. It was a test of character to be able to carry on at all.
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Good to hear from you Tersia – and how timely. Two and a half years, and I’ve been feeling worse. The longer it is, the more real it becomes…yet I’m still shocked. I’m sorry you have such difficult memories to live with; the other side of that is the tremendous love and care you gave her. No one but a mother could do that. If you ever doubt your strength, read this post and see just how strong you were for her. You two – what a pair you are; your love for each other is palpable. And what a gorgeous picture you’ve got at the top of your blog.
Sending you so much love, Tersia.
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