Parents

The Story of Me – Fatigue

The Oxford Dictionary describes the word fatigue with terms including:

  • exhaustion
  • extreme tiredness
  • reduced efficiency
  • lessened response/enthusiasm
  • weakness

and due to:

  • exertion
  • prolonged activity
  • overexposure
  • repeated variations of stress
  • menial tasks

Various dictionaries attribute the origins of the word fatigue to French and Latin words meaning to tire out and to satiety/surfeit (full or to excess, replete). We hear the word commonly used in relation to battle fatigue. Though the battle is not war as such, caring is a battle with the mainstream, systems, conformity, presumption, prejudice, invisibility, isolation…and this is an incomplete list.

 

As each individual is…well…an individual, but with similarities to other humans, so is each family, group, community, school, medical facility, government etc.

As a unique human, those things which fatigue me may not be the same as that which fatigues you. We may have some common struggles, and I may have some in common with another but that I don’t share with you.

 

Though this is by no means the only thing that I am fatigued by, forms and documents are exhausting just by the mention of them. Prolonged, overexposure; repeating the same information in different ways, on different forms, for different organisations, every visit/year; meniality; repletion; reduced efficiency and enthusiasm; exhaustion.

Some forms and documents have added stressors to them – applying for funding (asking others for financial assistance with my family, something I feel I should be responsible for); requirements to continually speak of my child/parent’s deficits; re-documenting a permanent, congenital condition…repeatedly, paying medical professionals, getting to appointments etc…

But forms generally now fill me with dread. The words I tell myself can be a help or a hindrance. For example, I can (even sub-consciously) tell myself this will take a lot of time, I will be required to get further medical/educational/allied health documents etc. or I could tell myself that this won’t take long and will then be out of the way, I have done these before so I know what I’m doing. But the efficacy of this process hinges on various contributing factors, which will differ each time I have forms to fill out. How tired I am already, how many forms I have had to fill out in recent days/weeks, do I have to work or attend meetings at this time…you get the idea.

 

Forms and paper work are one of the most difficult tasks for me to complete, simple as they may be in and of themselves (appointments for professional support documents notwithstanding).

For you, it may be other things like:

  • social outings
  • education settings
  • hospital/doctor visits
  • family get-togethers
  • a visit to the hairdressers

The list is endless, and unique to each of us, our children, family and season of life.

 

I have Form/Document Fatigue. What fatigues you?

 

2/10/2018

 

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 Tunnel – A Parent’s Latter Journey

The Tunnel

 

Entering a tunnel

Darkness closes in

And roads, once open for to travel,

Are behind, now growing dim

 

Tunnels within the tunnel

Are hidden, not in view

Another holds a lantern

Describes the roads I now can choose

 

Confusion reigns in darkness

Who is safe to trust

Suspicion fills the spaces, which

No longer are robust

 

A strange and lonely journey

Travelled without choice

The One who’s been my leader

I can yet hear His voice

 

Trusted Him in struggle

Trusted Him in peace

As promised He’s been present

Promise stands;

He’s present, He will lead

 

30/3/2018