We cannot be measured

We cannot be measured

An open letter.

I respect you. I really do. You obviously care and have years of experience. You haven’t had a personality transplant to take this job. You want to help people, to help families like mine.

You are in such a difficult position.

You’re the face of the bureaucrats.

The ones who get to say ‘No”, without having to look into the whites of my tear stained eyes.

You are thrust forward on to the frontline and asked to make a professional assessment. You present information that can be skewed and swayed to depict a story that ensures provision meets ‘need’.

Yet as you sit across from me in my kitchen – where I feed my children and fold laundry – you ask me to expose every detail of my life.

Have you ever had to explain how hard it is to cope?

How your love doesn’t put enough minutes in the day or energy in your bones?

How love, no matter how deep, cannot give you more than two hands or infinite emotional strength?

Let me tell you – it is hard.

I am unable to articulate the weight of all I carry – words are not enough.

As you scribble down notes, assessing and measuring my family I drink my tea and swallow my pride.

You can’t just accept that help is needed.

You can’t trust me when I say I’m spent.

You need evidence.

Hard evidence that it is too much, too difficult.

Evidence that my son deserves more.

What you can’t seem to understand is this simple truth.

The people who hide behind you, are the ones who make my son and my family disabled.

With the right support, we could not only function but thrive. Making memories, enjoying the time and opportunities we have. But with the cloud of austerity and shrinking budgets comes an ever-increasing burden of disability. My son’s disability is borne out of a lack of support. The opportunities, the equipment, the political rhetoric and policy promises exist – but too often only on paper.

And all the while, I feel I’m betraying one of my greatest loves. I have to share our deepest secrets. The tears in the corner, the silent cries of longing to give up.

I dare not tell you of the happiness, the fun, the memories and immeasurable joy because you might misunderstand.

I dare not confess what a gift caring is, how treasured and full my life has become.

I dare not mention the extreme highs, the smiles and laughter.

I shy away from admitting these things for fear you might take away what help I have and drain our family of the life-giving support it relies upon.

It is an ever-present fear.

Yet I will still reach out in faith. I will continue to dare to trust, to pursue effective communication for the sake of my children and our future. So, as you step away from my home, shake my hand and write your report, please never forget – this is our family, our future.

No swirls of black on white can depict the depth of our lives or the measure of our existence.

No diagnoses can define who we are or determine our contribution to the community.

And please never minimize the impact your work has on either making us or breaking us.

Yours,

Another Mum

 

Photo credit Nicola Parry

By | 2019-03-07T08:05:54+00:00 March 5th, 2019|Categories: assessment, communication, disability, mum of child with disability, Respite|2 Comments

About the Author:

Qualified Nurse, Writer, Trainer, Public Speaker and unqualified parent of three. My days consist of Lego, laundry and loving three boys, one of whom has complex and life-limiting disabilities.

2 Comments

  1. Joan Green March 5, 2019 at 5:47 pm - Reply

    This is so true.

  2. Carolyn March 6, 2019 at 2:11 pm - Reply

    Rachel, thank you for sharing this…so very true even more today as it was 37 years ago when our second son, Guy was alive. x

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