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

The Story of Me – Begin…

I could start at the beginning. I could pretend I know my ending, and work backwards. I could give you the bleached version, the raw version…

Welcome to the as-it-comes ‘story of me’, and I’ll begin where I am.

I am at graduation. Graduating from seventeen years, three children, and parenting through school (including my own first academic qualification).

Would I do things differently? Well, that would be to pretend I could be different to who I have been at any given moment. So, if I had my time over (pretending again), I’m guessing it would be exactly the same. Are there things I regret – conversations, actions, reactions, beliefs, values? Of course! Which shows I’ve grown; reflected; learned; processed; become more wholly myself. Not arrived, but arriving.

 

One of the most painful paths of my journey has been going through the school years as a parent (and I didn’t much like most of my own school years). A parent with children who experience the world outside of the mainstream.

There was some seasonal epilepsy, which was met with compassion. We brought with us allergy and eczema, which was largely dismissed, or used to shame and control. Blindness and emotion, though, were largely to be feared, seen as a threat, and handled by protecting ignorance, the status quo. Essentially, self-preservation of staff and systems (even outdated/non-recommended systems) – at the expense of…my children. Not just their academic education, I had been learning how I would facilitate that since before they were born anyway. But their sense of self, individuality, place in the world, contribution to the world, belonging in the world, was undermined at almost every opportunity.

 

To those of you who embraced my children (though few in number), drawing them into community and thereby being changed and changing yourself as a result of being in each other’s worlds, thank you.

Thank you for learning to do and say and model differently to your preferences, so that my children could learn in the ways they needed to. Thank you for engaging with their ways and their person – especially those of you who saw each of my children as their individual selves. Not as one, identical. Thank you to the ones who naturally did these things, and thank you especially to those of you who responded positively to change when challenged by my children.

I thank you because you are/were rare. Like an endangered species, hard to find, at risk of extinction, often being slowly extinguished by systems. Thank you to those of you who are like my secondary school teacher sister-in-law, psychologist/teacher uncle, and primary school teacher/principal uncle; those who are like my mother, who intuitively tuned in to the individual; individuals like my father, who learned to listen and learn from others (experimenting, modelling and teaching what he learnt), and standing boldly for those who had no voice.

 

Sadly, to be a ‘shifter’ in a mainstream system is not easy, painless, comfortable, or the way to make and keep friends easily.

So, kudos to those who will shift and be shifted for the benefit of the other, and consequently for the benefit of the whole… us.

1/1/2018

More Stories to come

Who is a Woman?

Who is a woman?

 

She is fragile; she’s strong

She can weep when she needs to…or burst into song

 

She stands – independent; she sits with her Kin

She builds her community…in spite of the din

 

She fights for the voiceless; she sits still with the lost

She can speak or keep silent…whatever the cost

 

She’ll look deep within; she’ll know when to seek help

She is healthy, proactive…she survives by her stealth

 

5/9/2017     For Women’s Health Week 2017

R U OK?

Are you ok?

Well may you ask – sometimes it just depends on the task

Or maybe the task has nothing to do, it may be the day is just a bit blue

Perhaps “just a bit” is a big understatement…life may paint blue as I walk on the pavement

I may be thinking I’m nothing of worth –  if the sun hasn’t shined, my thoughts just may not ‘work’

My burden, I may think, is just mine to bear…but those kindred of spirit can help burdens to bear

Some days I might not know the value of ‘we’ – if you welcome me in, we may help me be free

Ubuntu, I’m told, is the story of me…and the story of you…and the we, we can be

Are you ok?

Why not just ask?

We may find we’re friends, who help each walk through life’s task

Gina Schmidt          R U OK? Day           September 2017

A Private Conversation with a Fellow Parent – Some Reflections (with permission)

Sometimes we parents get to guide our children through learning experiences which are unfamiliar to us, outside of our current comfort zone, and seemingly not within our perception (or another’s) of the mainstream gig of ‘growing kids’.

One way to tackle these moments might be to chat with someone who is further along the parenting journey than we are…so, I recently got to have a great chat with a go-getter parent.

As my adult children have all been blind since birth, this chat was essentially around having a conversation with a child younger than mine, about the differences between a parent/child relationship, and the parent/parent relationship. It came about, though, because the child had heard mum and dad during intimate moments.

Many of us have had the experience of walking in on dad and mum during sex, many of us have had our children walk in on us, and many of us feel either uncomfortable or unsure about how to respond. Some of us also have the consideration of what our children can/can’t see, hear or comprehend no matter what the new experience encountered.

After hearing the parent’s story of what had been happening with their child, how the parent themselves felt about the kind of conversation they may need to have, and the child’s vision impairment coupled with some level of communication/comprehension difficulties, we brainstormed some strategies for the immediate, and some suggestions for in the future.

The child had been repeating sounds heard from mum and dad’s room when they’re alone, and those sounds were beginning to be repeated at particular times. The parent believed that the frequency was increasing and wondered what, if anything, they might do about it. Since there was perceived future negative impact for the family and their relationships, and seeing a potential learning opportunity for the child, these are the strategies we worked out together:

  • Talking with the child about their own special relationships (e.g. with a grandparent or sibling)
  • Discussing something that the child does only with that person
  • Explaining to the child that the sounds heard from the bedroom were only for mum and dad, as their special times with another family member are theirs alone

Because of one of the diagnoses the child has been given, it was recommended that a chat with the educational psychologist that the family already connect with might be a good idea to talk through some of the possible related experiences they may have with the child as they move into teen and adult years.

For the parents, I suggested that the bedroom may not be the only place for physical intimacy. This might reduce or eliminate the child associating what was heard with that room, and the parents. It also brings with it some new interest for the couple relationship…nothing wrong with that!

Who could never say that we don’t have anything to learn by being a parent?

And thanks to the other parent for trusting me with their story, and wanting to share some of their own journey so others may have a few more tools to work with.