Your Presence is Your Absence

You are not here

But I do not forget you
You pervade my every day

You are in the morning sun

But I do not make you toast

I cannot kiss your waking face

You are in the fold of my arms

But I do not feel your warmth

I cannot hold you close

You are in the playground 

But I do not push your swing

I cannot hear you laugh

You are in the little girl's smile

But I do not feel your joy

I cannot share your glee

You are in my old wedding dress

But I do not see you twirl

I cannot make it fit

You never shed any tears
And I do not wipe them away
I cannot make you better

You are in my mother's soul

As she ages and changes

But you cannot share her life

You are in my past, present and future

In my pain, and in my joy

You are everywhere, and yet nowhere.

Big words, small words...the most important words

I've said before, I love words. There's something wonderful, for me, about words that are different, delicate, unusual, not oft heard or spoken. It's like opening a hidden treasure, when I see a word that requires me to open the dictionary. Words can be like music, almost ephemeral, like they can float from your grasp if you don't catch them in time;  notes of a tune that disappear into the past before you've had a chance to really experience them. You know they are something that you want to pursue, to understand, to acquire or conquer, to know.

I love reading books in which words are used so carefully, creatively, poetically; where it is like I am floating on a wave of learning and gentle inspiration. Words that enter
my mind and my soul.  Words like insouciant, flipendulous, liminal, charientism...

Sometimes people who use big words, words that appear important, intelligent, out of the ordinary person's reach, words that can be intimidating or seductive, seem like people we should admire and respect. Sometimes when we hear a person use words that are unfamiliar, coated with the wealth of a secret knowledge that is held by those out of our league, we feel that this person deserves our admiration, our attention, our reverence to their opinion. But ultimately, words are just letters, lines on a page or spoken sounds in the air. And it's not the words that are important, it's what the person means to communicate which holds the most value.

I recently read the book, a first novel by the author Wendy Jones, "The Thoughts and Happenings of Wilfred Price, Purveyor of Superior Funerals". It is a story about a young man who learns that it's not big, or academic sounding words that are important, but the small words which are most often the most difficult, yet important, ones to say. After being seduced by the love and intrigue of unusual words, and the belief that how one speaks reflects the character and value of the person, Wilfred comes to realise something else:

     "Words went on forever. And it was strange how the most important moments in life required one to speak, to say what one felt. What I need, he thought, is another kind of dictionary, one that tells me what to say when I don't know what to say. Wilfred wondered what words such a dictionary would have. Phrases such as 'I'm sorry', 'forgive me', even that most difficult of phrases, 'I was wrong'... the words he really needed were the ones his heart spoke... Big words, clever words - were rather grand, too grand really, and unnecessary...It was sufficient, more than enough, to speak plainly, to say what was in his heart. And that wasn't about long words with lots of syllables. It was about simple words. And courage."

I'm often surprised by own sense of inadequacy when it comes to finding the right thing to say. Goodness me, I've been writing and speaking in some way for a living for most of my adult life! Moreover, I know what it is to suffer. I know what it is to feel like the whole world is silent, with no words to offer me. I know what it's like to desperately wish the person near me would just say some simple words, even the words 'I don't know what to say'. But I, too, am sometimes crippled with a lack of courage or clarity, and the moment so often passes when a few words would have meant so much. Sometimes a stranger, sometimes a friend, or family member. I am ashamed of myself in those times. And I vow to make it up to the world, my fellow human beings, in some way next time the opportunity presents itself.

But what propels me most these days, to not hold back, to find those simple words, is my mother. Mum has been living with ovarian cancer for nearly two years. Her body is at war with itself now more than ever before. She is changing before my very eyes. I have never more desperately hoped that I will see her age, to be an old woman. She turns 70 this year. I want to see her at 90. I want to be able to say all those simple words for many more years. I want to learn not to hold back. I want her to hear me say things, not just to know, intuitively, what I am thinking. I love you Mum. I admire you. I am in awe of you.

Simple words. Spoken out loud. More poetic, meaningful, and important, than any long and unusual words could ever be.

From: http://www.speareducation.com

Acceptance, and why it may not be such a bad word

I love words. I love writing, reading, and using words. I think about their meaning, how they came to be, and what they mean for me. But perhaps that’s why I sometimes also struggle with words. Acceptance is a word that has haunted me for quite some time. I’ve hated it, avoided it, longed for it, and been utterly confused by it. Such a seemingly simple word, but one that can create such a variety of experience depending on the subject of that acceptance.

Etymologically speaking, acceptance essentially means “taking or receiving what is offered”. For example, the Oxford dictionary provides the following definitions:

1.    the action of consenting to receive or undertake something offered

2.    the process or fact of being received as adequate, valid, or suitable, and

3.    agreement with or belief in an idea or explanation:

So why has the word ‘acceptance’ haunted me, and probably many others? Well, when it comes to grief, acceptance is a key term, but it is not so simple. Kubler-Ross’s famous theory includes acceptance as one of the stages of grief (Kübler-Ross, 1969), as does William Worden in his four grief tasks (Worden, 2008). For example, Worden describes the first grief task, acceptance, as ‘accepting the reality of the loss’. He or she is really gone. They are dead.

Now that doesn’t necessarily mean that one has to be “OK” with the fact that the person is dead (Indeed! I did NOT consent to receive this death!). But they do need to accept it as true (Well, maybe I can agree with the idea or explanation that this death has happened). Sounds simple and logical. But from there, one is also assumed to be able to move on in their life, with the knowledge and acceptance that the deceased is no longer alive and that the relationship that did exist at best needs to be transformed or reintegrated into the bereaved person’s life. This is the difficult bit. Most of us don’t really know what this means. Moreover, a therapist, a friend or relative, a stranger, or a work colleague will no doubt conceive of reintegration very differently. For many, reintegration does not mean openly talking about the deceased, having photos displayed, organising birthday parties and so on. Instead, for many it means ‘letting go’ and integrating the reality of loss into one’s life.

From a psychological perspective, the term acceptance has been described as “a person's assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit...” (from http://en.wikipedia.org/wiki/Acceptance ). Some have also related it to the term acquiescence, which derives from the Latin word 'acquiēscere', meaning ‘to find rest in’.

When my daughter and then my son died as babies I was devastated. Grief was like a deluge. But as horribly painful as it was, true to my independent and occasionally stubborn self, I did not want to ‘heal’. I did not want to ‘move on’. I did not want to ‘accept’. I wanted to immerse myself in my sorrow and never let go. I wanted to protest all this grief work! My poor grief counsellor, a wonderfully wise and amazing woman, must not have known what to do with me at times!

And yet, I did want to live my life. I also wanted to know what this journey of grief was going to be like, in 5 years, 10 years, and 40 years. But there was no manual, and most support guides for grief centred on the first year, maybe two, as if somehow after that it just runs its course and life continues on.

I continued to resist the idea of acceptance. I would close my ears and eyes, my mind and heart, whenever I came across this word in relation to grief. However, I also continued to see my grief counsellor over several years. I wondered whether I would ever not feel such deep pain and sadness. I tended to accept that I would. Because I could see no other way. No other way to satisfy my need to mother my children. This is one of the most difficult things with the death of a baby, when their little lives were so short. Love and pain are so tightly connected that it is difficult to only experience love. And to let go of pain seems as if you don’t feel love.

My children died 10 and 9 years ago, respectively. I’ve often wondered in more recent years how I coped, particularly early on. It wasn’t until I attended an Acceptance and Commitment Therapy (ACT) workshop (as a practitioner, not in relation to grief or myself) that I realised acceptance has played more of a role than I ever imagined. According to the ACT guru Steven Hayes, acceptance in this therapeutic context is:

…an alternative to experiential avoidance. Acceptance involves the active and aware embrace of those private events occasioned by one’s history without unnecessary attempts to change their frequency or form…For example, anxiety patients are taught to feel anxiety, as a feeling, fully and without defense…Acceptance in ACT is not an end in itself. Rather acceptance is fostered as a method of increasing values-based action.” (http://contextualscience.org/the_six_core_processes_of_act )

And this is just how I have grieved, although I never realised it at the time. I did not stop my pain. I did not resist it. I allowed it to be whatever it was within me. I did not avoid experiencing my babies, even though that meant also experiencing all the heartache. And it literally was, and still is, heart-ache.

With the support of my grief counsellor (Yes, that’s how wonderful she is), I remember specifically exploring how I might parent my dead children. How could I still be their parent, even in their death? In line with the ACT notion of acceptance fostering values-based action, it was my acceptance of the pain and experience of grief that enabled me to identify what was truly of value to me. Being a mother, and not giving up.

A woman who lives with Rheumatoid Arthritis writes in her blog (http://idanceintherain.com):

Do not see acceptance as a weakness.
Accepting a situation does not mean you are giving up.

When I read this, it was like it had been written just for me, and Lillienne and Finn. I did not want to give up on parenting them, even though I had accepted that they were dead.

I’ve learned a lot about parenting a dead child over the past 10 years. I’ve written briefly about this before (see my post “Parenting the dead” from October 2012). But I’ve been thinking a lot about it lately as we get closer to Lillienne’s 10^th birthday this year. And I’ve reflected on how I’m changing as a parent to her in subtle ways, just as I would if she really was a little girl of ten. I give her a little more independence now. I don’t worry about her so obsessively like I did when she would have been much younger, and in the earlier years of my grief. I still think of her every day, and I miss her like crazy at times. But I can even smile sometimes when I think of her, and wonder if maybe she is off having fun with another little soul. Sometimes I feel her beside me, but when I don’t for a while, that’s OK too. She always returns, because we are connected, she is a part of me, totally (re)integrated, and always will be.

Artwork by Sharon Hendy-Moman (Brisbane) - commissioned in 2013 by me,
to represent Lillienne and Finn as children.
http://www.sharonhendymoman.com/