Doors and Whitewashed walls

Doors and Whitewashed walls

This week I stepped in the door of a local Rotary club meeting and received a warm welcome. My husband sorted the kids for school while I sat down, ate breakfast and pretended to be a grown up for a couple of hours. The people I met were really friendly and they listened intently to my story of a little boy entering my world and turning it upside down. How I was sent down an unexpected path of disability. A road littered with potentially fatal seizures, feeding through a tube , syringes, medications and seemingly endless appointments. Into a world of milestones such as being certified blind rather than first steps.

I told them about the day I heard the results of my son’s brain MRI. How the doctor used words like no part of the brain untouched , extensive and severe . How she sat in a small room at the Hammersmith hospital and white washed my future’s wall.

A wall I had gazed at for years adding colour and detail.

My many imaginings and hopes had been lovingly swept across this wall in bright vibrant colours. Yet with a different script her own paintbrush dripped thick with brilliant white paint and created a blank canvas.

Many of her words echoed of the doors around me slamming shut.

So often a blank canvas’ is both exciting and inviting but that day it felt daunting and overwhelming. With time I learned to stop staring aimlessly at my future’s wall and instead focus on my present. The gift of today.

Tentatively we stepped off living on the knife-edge of epilepsy. Ambulance crews no longer knew us by name and the immediate anxiety gradually subsided. With time to look around I noticed I no longer recognised myself and I needed to reshape and remould my life.

Although I know everything can change in an instant I have recently dared to pick up my paintbrush once again. I have begun to dream and imagine, create and hope for a future.

At the end of my Rotary Club talk I gave each person a Lego door’.Door

The doors in life abound.

There are so many doors and quite a few are out of my control. Yet even when life feels like a constant bombardment, taking all my energy, I can still stop and evaluate the doors.

Sometimes it takes something big to stop me in my tracks causing me to think about whether my life really reflects my values. To consider whether I spend my time, energy and money on the things I hold dear. Sometimes it’s too easy to wait until next month, next year or when things are less stressful’ to make changes.

Occasionally I need to do some slamming. I need to shut doors that are draining my emotions and placing too much responsibility on my shoulders. And sometimes I find myself longingly staring at a door, wondering whether I dare to push it. In a daydream trance I imagine where it might lead.

Door on windowsillThis morning I have taken my door and put it on my kitchen windowsill. This week I’m thinking about the doors I need to shut and open to make my life reflect the things that are most important to me. The things I need to do to make sure I am filled up more than I am drained.

Are there doors that you need to close? Are the doors you’ve longing looked at and want to throw open? Tell me about them and I’ll give you a push.

By | 2017-06-15T11:25:39+00:00 January 29th, 2015|Categories: cerebral palsy, epilepsy, family, mum of child with disability, parenting, priorities|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. Jenny Flannagan January 30, 2015 at 12:12 pm - Reply

    Thanks Rachel, this is so encouraging. I feel inspired to do some serious thinking about the doors in my life, and celebrate those I can go through.

  2. Jolene Philo February 6, 2015 at 12:27 am - Reply

    I agree with Jenny. This is a most encouraging post. Though my son’s special needs struggle is long past, there are some doors that still need closing in my life. Thanks for adding this post to DifferentDream.com’s Tuesday special needs link up.

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