Grief

Experience Has Taught Us Things

For many parents of children with health issues or mainstream differences, our journey began in hospitals, consulting rooms, early education facilities, and with professionals from these environments in our homes.

Sometimes these experiences brought relief, support. Most often, though, they brought grief, trauma and confusion – either alongside relief and support, or with the absence of them. A professional or medical person/s (or professional/medical environment) may have affected us in this way unintentionally, neglectfully, deliberately, just by nature of the environment we and our child needed to be in, and/or the condition itself that our child was experiencing.

What’s important about these early experiences is that they taught us things; experiential things; things we still react to; things we have processed and respond appropriately to; things that stir up emotion; things that lead to revisiting trauma; things that make it difficult to trust; things that have given us an understanding of the environments and professions we are now familiar with, but may not have been previously.

 

 

Life changing events take time, support, effort, willingness, process, reflection, grief, support, emotion, experimentation, withdrawal, acceptance, energy, support, progressive and regressive re-engagement – and more – in order to know and understand what has happened to our child, selves, and family, and in order to like/accept our new ‘normal’.

Support has a different meaning for different people and circumstances. As a noun we can be a support, being the one leaned on or sought for assistance. As a verb we can offer or give supports, like material, physical, financial assistance. My dictionary searches tell me that the word ‘support’ originated with words meaning to tolerate, carry from below.

If I am to support by tolerating, I will sit with people in silence; in telling their story on repeat; in distraction; in emotion; when numb… I will be interested in their story, experience (past and current), and the person themselves.

If I am to support by carrying from below, I will do or provide things which will lift the other up; allow them to fulfil their responsibilities; remain in their place; continue their movement. What might this look like? Providing meals if the days battles make cooking too difficult; driving to and from places; caring for other children; washing clothes, dishes, house, car; finding contacts and information to support in other ways; attending appointments with; taking notes during appoints for later reflection; offering to do a movie night at home with them; providing in some way for both parents to be together…it must be the things that the family find supportive though, not necessarily what I would find supportive (though it may be both).

 

 

How and when we respond to people (including ourselves), and circumstances will be influenced by a great many things. The fluid or static nature of our child’s condition, our financial stability or lack-there-of, geography, culture (ours, our family’s, society’s) etc. But there are three types of relationships we parents will have, that will have some of the greatest influence on how we continue to respond to our new ‘normal’ – our relationship with ourselves, our family, and the medical, educational, financial/governmental individuals and the organisations/departments they answer to.

One of the generally acknowledged aspects to the grief process toward acceptance, is blame. We may blame ourselves, our partner, our child, the medical professionals, educational professionals, government, society as a whole, God/the universe (whatever that means for each of us)…Part of our journey to acceptance of any sort will be ascertaining whether there is responsibility for someone to own, or whether we find ourselves and our child in one of those inexplicable, and unaccountable circumstances of life which come to us all. The acceptance destination of this journey will not necessarily be clear-cut, immediately obvious, apparent to others, of particular duration, definitely not painless nor comfortable, and sometimes unachievable.

It is very difficult to enter a world we know very little, or nothing, about. When this is thrust upon us, it is even more difficult. If there is no concrete rhyme or reason for our child’s condition, this journey to acceptance may well be a battle with ourselves to grasp a situation where there is no one who is responsible. Be patient with yourselves, I ask your supporters to be patient with you and themselves, and for medical, allied health, and educational professionals to be patient also. This grief journey reappears as your child’s milestones are achieved or missed, and as children are growing constantly, this will bring new opportunities to grieve over time.

 

 

If our child and family’s new path is due to deliberate or unintentional decisions, actions and/or words in hospitals, consulting rooms or education facilities, the journey will be more painful, take longer, and be inhibited if those with any amount of responsibility do not accept it. This will also be true when the diagnosis is of no one’s ‘fault’, but the family and child have been battered by insensitivity, judgement and presumption as their journey began.

Our families and friends will also contribute to the way we process through grief and along our new path, our new ‘normal’. The things you believe about us, yourselves and the choices you think we should be making will have negative or positive impacts on this journey we’re taking. Some of our relationships will not recover, some professionals will never see us again, some types of relationships will continue to carry the memory of trauma for us…and we respond according to all the things we have learned by these experiences – healthy and unhealthy.

As we heal, our responses will change accordingly. Some of the trauma will be so deep though, that even when we respond appropriately, and in a measured way…it will have been a mammoth task of concentration to do so.

 

 

To all the families battling through, I applaud you.

 

To all the families trapped under a cloud, I wait with you.

 

To all the families who’ve found their new ‘normal’, I rejoice with you.

 

To the professionals who strive to see people, I thank you.

 

To the professionals who have wounded us, I have hope for you.

 

To the families and friends who walk with us, I’m grateful for you.

 

To the families and friends who chose to walk apart from us, I release you.

 

 

 

Gina Marie 7/9/2018

The Thorns of Freedom

The thorns

Of grief and woe

Of trial and misery

Of shame and doubt

Of darkness, hopelessness, helplessness

 

The pain

Of laceration

Of piercing

Of lancing

Of pressure, puncture, sunder

 

The relief

Of baggage

Of irritation

Of criticism

Of angst, distress, mistrust

 

The freedom

Of peace

Of hope

Of faith

Of the scarred, healed, restored

 

26/10/2014

The Line

A line stretched out before me

A line running east to west

A line named grief and sadness

A line I don’t intend to cross

 

A line stretched out beside it

A line running parallel

A line of frustrated anger

A line whose beckoning, I quell

 

A line and then another

A line as far as eye can see

A line I mean to skirt around

A line traverser? No, not me

 

A line running east to west

A line unending either way

A line of infinite extension

A line unskirtable today


Today, one line I’m crossing

Today, when beckoned, I will come

Today, I’ll journey through completely

Today, feel pain and anger, some

 

Today, I crossed a line

Today, I plodded through

Today, I felt the anguish

Today, I’m weary and confused

 

Today, no longer feel afraid

Today, no longer bound to run

Today, I’m whole, embracing both

Today’s grief and joy within the son

 

Today, I live in victory

Today, I live as me

Today, I embrace everything

Then move on, another day to see

 

 

11/9/2014

From Stuart McDonald

I dedicate these sentiments I wrote (see below) to the people I know who find that they, too, may be beset by doubts, fears and anxieties beyond number, and who find themselves in a place of darkness, shadow and a woefully uncertain future. We live in our present because it is the only now we have.
__________________________________________________
Don’t Think That of Me (Stuart McDonald)

You cannot for a moment think of me as this person,
This man,
This wretch or this weakened idiot and fool you think me to be.
For in me, inside of me, as a man of this earth, as torn as the next and as sunken beneath the weight of my own heart as the next,
I am something else.
I am the thing you fear the most,
The faithful one
The determined and recklessly hopeful one.
Yes, quite possibly the most to be feared am I —
He who hopes even when he has none left to himself.
Emptied.
All self gone, all hope gone,
Empty.
Hollowed.
Hardly an echo of hope remains.
Hollow.
And yet I choose to still have something,
Something,
Some foreign and familiar thing
Drifting, floating and sinking within me.
Most to be feared am I.
This shell,
And this husk,
And this body burnt to a crisp.
For you would have me believe that
My fragile shell
Hollowed like a tree trunk carven an eternity ago
Struck down by lightening’s gleeful potency,
Is impotent.
And yet.
And yet, I hope.
My tears stream down my face and I hope.
In spite of my sunken soul and
This withered hand that reaches for someone else’s strength,
And wrapped in the cold blankets of the longest of winters,
I somehow choose some kind of hope.
It is not the kind I am use to.
Not me, my richest of dreams scattered in the winds like ticker tape in days gone by.
No, not like that.
And you think you can crush me?
Perhaps you can.
And perhaps even until the very last minute
I can look outside, beyond the claws
Beyond the mighty pressing weight you claim to possess
And which I certainly feel,
And perhaps even then … When all is fire and heat, and ice and stone all at once,
Even then,
I can gaze beyond this here
Beyond this now.
Even the hopeless can hope.
And I am that man.