life has been easy in comparison to the lives of these incredible women. I
never had the heartache or the feelings of guilt that a mother often feels
after giving birth to a sick or disabled child. You see I met my daughter when
I was 16 and she was 5. The only disabled child in Nazareth House Children’s
Home where I was working as a housemother, she had been locked in the pram
store room all day - every day - alone. Her cerebral palsy meant she could not
walk and would drag her feet along the nuns polished floors leaving marks in
her trail (and they couldn’t have that!) and her severe learning disability
meant her only stimulation was to scream and screech for hours on end and crash
her head into the floor, leaving a permanent sore from where blood constantly
trickled down her forehead. When the home closed down later that year Marie was
sent to live in a big hospital where
I was also offered a job as a cadet nurse. Though most of the staff were kind,
I felt a hospital was no place to bring up a young child, so I left my job and
contacted Marie’s mother who then made me Marie’s legal guardian, which at the
age of nineteen, gave me the power to bring her home to live with me.
Marie’s early years left her with many
fears and behaviour problems and one of her biggest fears was being left alone.
It had taken many months and a lot of hard work to get her to finally sleep in
her own room.
Like so many marriages, my first marriage
broke down after only a few years and Marie and I went to live with my parents
in Liverpool. We had single beds in my old bedroom and 13 year-old Marie was in
7th heaven being able to share with me. Some mornings my mother woke us with a
tray of tea and toast and I’d squeeze Marie into bed with me while she ate her
toast, passing her drink now and again then resting it back on the tray. I
think we were quite spoilt!
The problem started when we began to live
on our own again. Despite having a lovely two bed-roomed house and days full of
fun and laughter, within half an hour of Marie going to bed in her own new
bedroom she reverted to her old ways and the screeching began. She would scream and
screech for hours and I mean hours. All the continuity with her bedtime routine
had been wiped out. Sometimes there’d be a short lull and all would be quiet. I
would creep up the stairs and open her door very quietly just to make sure she
hadn’t hurt herself. She would be sitting on the floor looking up at me, pulled
hair in disarray, mattress half off her bed, curtains pulled down off the
windows, tutting at me as if someone else had done it.
Today I wonder
why I didn’t allow her to familiarise herself with the change. She could have
continued to share a room with me and slowly been introduced to her own room,
but I guess none of us are perfect and I made a big mistake expecting her to
adjust to being alone again when she hated it so much.
I can’t remember how long it went on for,
but I realised it was too long after my next door neighbour knocked on the wall
calling for me to ‘shut her up’. On a scale of 1-10, the psychological effect
of Marie’s screams on me was a 2 – the neighbour banging on the wall was a 20.
Our neighbour was actually very nice and apologised to me the next day,
explaining she arrived home after a stressful day at work and snapped when she
heard Marie screeching (again).
Over the weeks my nerves became jarred. My
neighbour only banged on the wall that once, but once was enough to make me
aware her peace was being shattered every night when the screeching began. I
didn’t know where to turn.
Night after night I sat for hours listening to the
screams, expecting the neighbour to knock at any time. I was twenty-five and
trying to cope with a broken marriage and being alone again. I lost so much
weight I was down to eight-and-a-half stone. Marie was trying to cope with the
change too. I didn’t know what to do anymore.
In desperation, I wrote to a consultant
psychiatrist who specialised in learning disability and whom we had seen two or
three times a year before we moved back with my parents. She was fantastic and
so hands-on with the parents that I had her home phone number in case problems
arose in between appointments. In my letter I asked the consultant if Marie and
I could go and see her. However, we were 140 miles away and under a different
health authority. She could have responded to my letter suggesting I see my GP
for a referral to a local specialist, but she didn’t. A few days later I
received an appointment to go and see her almost immediately.
It’s strange that I don’t remember how we
got to the station that morning after we left the house, or the train journey
down to Peterborough. I felt dead inside. I just couldn’t cope any more. I was
going to ask the consultant if Marie could have a permanent bed in the
residential facility she ran.
I have a clear memory of being in the
consultant’s office and Marie going into one of her screaming bouts. I couldn’t
do anything with her as she sat on the floor screaming making it difficult to
talk above her noise. I felt so useless and so drained and knew I brought the
situation on myself. (Broken marriage – all my fault......)
On reflection, it was probably a good
thing for the consultant to see Marie in one of her rages; seeing first-hand
how difficult and how distressing the situation was for both of us. I asked her
about the possibility of Marie going to live in the unit. I was filled with
shame. I loved Marie so much but I couldn’t see any other way out.
The consultant was kind and concerned and
I was sorry to have put her in such an impossible situation. She knew me well
and said she didn’t think I would like myself very much if I took those steps.
She was right, of course. I began to realise sometimes it takes other people to
remind us of who and what we are.
We had a long chat and after reviewing
Marie’s epilepsy and other medications she suggested a lower dose more
frequently instead of a high dose at night and she would write to inform our GP
I DO remember the train journey home that
evening. We didn’t get into Liverpool until after eleven. I left the house
earlier that day full of despair and returned feeling like I had been reborn.
The doubt and uncertainty began to melt away and I decided we were going to be
okay and I was in it for the long haul. Within a few days of Marie’s medication
being altered the screaming bouts stopped and she gradually settled down at
But the experience made me painfully aware
of the difficulties parents of disabled children face. A child that does not
sleep wears you down with the sheer endlessness of it all night after night. I
was fortunate to have had someone to turn to.
That was in the late 70s. Today parents of
special needs children would be lucky to meet a consultant psychiatrist let
alone have their home phone number. Most of them don’t even have access to a
social worker anymore.
Then along came the internet! The good old internet with
its media sites and forums that gave us parents a voice that could be carried across
the world. Many of us were full time
carers and the support we gave each other was a lifeline - an opportunity not
only to share the joys our sons and daughters brought into our lives but also
the chance to rant about the frequent injustices we met head on.
A lot of Mums found an outlet in blogging about
their daily lives and as I read some of their stories the hair stood up on the
back of my neck. I tend to read blogs rather than write them but a burning
desire to share their stories with a wider readership motivated me into
convincing these women how amazing they were, (they really had no idea!) thus
creating the Warrior Mums.
Initially I imagined a couple of pages with a few
photos, but the more I learned, the more remarkable I found each and every
family and the more I encouraged them to share the sadness and the joys of how
their lives panned out.
The Warrior Mum journeys were featured in my blog
every Sunday and became an immediate hit, read by people from all walks of life
and discussed on Twitter for days afterwards.
I am so honoured to have 'met' these wonderful women
and thank them from the bottom of my heart for their generosity of spirit, for
opening their normally closed doors and dredging up memories they probably
preferred to forget - in order to help
I hope this book will take you on a journey of
For new parents it may give you pointers and lots of
hope to know these Mums once felt afraid and bewildered just like some of you
do now, but they came through and grew to love and accept their special needs
child just like you will.
For professionals: some of you may have been
involved in these journeys and had a positive impact on the family’s life. And
for those just starting out, take these stories with you and remember, as
Warrior Mum Donna Street says in her journey, you have a chance – an
opportunity to do good, but you have to want to....
Thank you from Jan Tregelles
Thank you from Jan Tregelles
As Chief executive of the Royal Mencap Society, and also as a mum, I have the utmost respect for parents and carers, many of whom sacrifice a huge amount, but also gain a huge amount of joy and insight, from caring for loved ones with a learning disability.
And not forgetting our guest international Mums..
|A special tribute to Australian Mum Marie Greening Zidan.. The Wonderful Mother She Was..|
Other blog posts about Warrior Mums book Release
Wendy Hirst at Savette.com
Click to buy Available from Amazon