I love the changing months, don’t you? I find it
the greatest pleasure in life I think, the freedom to explore those changes. Be
it rural countryside, town or city to see the changes of the seasons is a way
of viewing the landscape with fresh eyes and senses.
The excitement of January leading into February
with the lengthening of the days, everything is just waiting to leap into
action. The fresh buds forming this year’s display of beauty is in every tree
and shrub. You have to admire the Crocuses popping their heads above the grass,
opening up in spectacular glory, delicate and oh, so brave at this time of year
don’t you think?
Those concealed and tightly cocooned buds are
like closed bursts of joy, filling out and loosening their grip waiting to pop out
their magic. Plants and trees waiting to build on the previous year’s growth and
those daffodils popping up in more abundance than they did last year, like
little family gatherings building into that “host of golden daffodils” invigorates
my thinking.
As I struggle against the bitter gusty wind and
drizzling rain to retrieve the washing and the odd sock from our beloved sock
killing terrier, Amber, I look up to see my son’s window and wonder if his
“inward eye” can still remember how it all felt; that freedom of wondering
around pain free and able to breathe easy?
I giggle as the line in William Wordsworth poem
“I wandered lonely as a cloud” plays in my head. Looking up at the sky with its
canopy of clouds I ponder - are clouds ever alone? We may just see one in our
felid of vision but there must be more in the sky around the world.
Solitude, I used to dream of solitude. We all
need it, to gather thoughts and allow our brains and minds to think with
wondering thoughts. However, when it is forced on you when you are a carer or
due to a body being unable, how do you fill your heat with pleasure?
Sometimes you know when I look out at the
blackbird and the robin singing or tugging at worms; mostly when I’m doing the
washing up, I’m finding it harder to look on those wonderful sights with
pleasure and the frustration of being bound and gagged by my son’s ridiculed
illness, is becoming harder to bare without that bubbling anger. Over the last seven years I have learnt a lot
about self-control while being gaslit by those out of control gaslighters.
That poem reminds me of those long walks of
babbling fun with my youngest son; a double edge sword now that can cut deep.
Those carefully kept moments in time, when we had taken his older brother and
sister to school, that I laid down so carefully to look back on are empty and
hollow now.
He was never happy lying down, so pram walks
were out of the question. I carried him in a pouch and then in a backpack. He
wanted to be upright and able to see as he slowly slipped into slumber. This
was my quite thinking time while the baby slept, and the dog wagged its tail
while sniffing the undergrowth. This time, however, was short lived. Quiet
reflective time was out of the question past the first few months. In the
backpack he would babble with authority and would communicate all sorts of
tricks to Grace our black lab.
As soon as Angus was born, he was alert, active
and so full of life it was breath taking. He was never happy taking a passive
role, if there was action, he was right in the middle of it and mostly the
instigator of it. Some days I would stand back and marvel at his ability to
cause mayhem in the most unexpected ways. He liked to do things in a pattern
but occasionally he would break that pattern and all hell would break loose.
You see most mornings he would play with Grace
next to me while I got on with putting the washing in. Hoping he was exhausted
enough to just read a book or possibly having a little nap so more of the morning’s
chores could be achieved. That gentle routine had been established right? Only
a matter of planning another activity and well life was sorted - right? However,
that gently and well-established routine had lulled me into a false sense of
security.
Welcome to a Tilly Moment
I had my back to him, that cold and
exhilarating morning, I was sorting and putting in washing while making a list
in my head of the plan of action for that day. As children often do, he would
copy me and as he sat there book or ball in hand and sock in Graces mouth his
gentle babble and odd garment thrown that routine had put a glorious smile on
my face.
I was mindful that Grace thought she was a
washing machine and her spin cycle was out under the apple tree, which would
only stop when she had found just the right spot to lay the item or items
freshly laundered on the most muddy spot she could find. She would then sit and
patiently wait for my arrival. This was playtime folks, oh the joy of it!
So far so good and everything under control
take a deep breath.
I had just seen the tail wagging like a
starting flag at the beginning of a race and wanted to turn on the washing
machine before I started to “retrieve it or lose it” game and yes I did wonder
which one of us was the dog, Grace for the “chase me” or me as a “retriever? I
would find the odd bra when planting bulbs or stuck in the oddest of places in
the kitchen - normally when I was making a drink for a client. Have to give it
to them, they definitely kept me active, mind, body and soul.
This day however, for whatever reason was not going
to that well-ordered routine. Turning round I was gobsmacked as I surveyed the
carnage. The washing powder all over the floor, in Graces Watering bowl along
with my sexiest and only one left, bra being used as a tug of war rope. It took
me a few moments to register the fact he had unlocked the baby lock, opened the
seal of the childproof box and where did he get the jug from, and the chalk,
glitter and glue?
Grace’s tail was causing him to go into
hysterics as it wagged. Adding to the hysterics was my flapped around trying to
retrieve as much powder and put it back into the box. I grabbed the chalk from
his mouth and dumped the jug in the sink. I wondered if I could use the rest of
the glitter festooned washing powder in my husbands work clothes. After all he
did tell me his life could do with a little extra sparkle.
I took Angus over to the only Angus safe room
in the house. I was too stunned to be cross and as I put him down. He just got
up off the floor wagging his finger at me as though I had done something wrong.
Turning back from him and the child gate, I couldn’t help myself but to chuckle.
After cleaning up the mess, I made a coffee to
get ready to read the book he would have chosen from the bookshelf. It was our
time - me for a coffee, him for a story and Grace for a bone. I made notes not
to buy powder ever again and complain about the child locks, childproof box,
surely Angus can’t be the only one who could open them?
I found him, however sitting on a large pile of
books reading one to Grace who was intently looking at him. Not sure if she was
listening or just waiting for a bone but it was a wonderful sight and I stood
listening for a while. When he saw me, he tried to scramble off at such speed
he rolled down the mountain of books and bumped his head. Wondered if he should
cry for a second or two but decided to carry on reading, red mark forming on
his forehead like a large egg and grace with her chin on his chest - his
constant guardian and the ultimate companion and protector from his mother’s
telling off. Her golden amber eyes all-knowing and loving, just put things into
a perspective. He is only young once - he will learn - let him be.
Grace died when Angus was around two. Our
companions now are two Norfolk x terriers’; mother and daughter. They taught
him to ditch jump and run in circles of joy. There were times I just wanted 5
minutes peace to listen to the bird song, breath in the fresh icy air and drink
it all in. Or to sit for a while and have a quiet cup of coffee looking at the
robin and blackbird, as they sung in our garden. The feeling of satisfied
exhaustion settling down my day while I read to him and he slowly slipped into
sleep. I would look on him as I did the tightly closed buds of that emerging
spring. He was so full of potential, joy and wonder just ready to burst into
life and make his mark.
It is these memories and times that I remember
now when I walk. They bring never ending tears in my heart, that prick my eyes
so that I can no longer see the beauty around me. I am riddled with guilt when
I walk, as I walk free and easy while he is cocooned in pain and in such depleted
energy.
The exhaustion I felt back then was one of
fulfilment, the exhaustion I feel now is of frustration of being let down by a
system that is hell bent on portraying me and thousands of mothers like me as “demon
mother”. There are 101 reasons for this you can read them in my blog over the
last 7 years.
However, nothing compares to my son’s
exhaustion. It is like watching your delicate promises of this year’s perfect
rose being frozen, while gradually seeing tears appear in those delicate petals,
one petal at a time. I feel as if I’m watching
that most glorious rose bush, stand alone with stunted growth, riddles with
viruses, mildew and green fly, wondering how much more it can take.
I have always dreamed of writing a silly little
blog, full of Tilly Moments for friends and family to enjoy. That came to an
end when Angus fell ill with Myalgic Encephalomyelitis (ME). They renamed ME
with Chronic Fatigue Syndrome (CFS). My son does not have fatigue, he has
exhaustion in every cell of his body. Heart breaking as it is, the worst thing
about it is the abuse of mental illness, being used as patient blame and demonising
motherhood. It is easy for the medical profession to convince the public those
that suffer with complex conditions, are unworthy of support or biomedical
research or treatment.
So, what to do? How do we change things? I
can’t leave it like this can I?
Change will only happen if we start to talk
about what ME means and allow those young people like my son to have a voice.
Problem is, he is too ill to engage and talk. I need the public to get behind
mothers and bring back the respect and common sense. The evidence that mothers
have been keeping children safe for millennium is there for us to see and how
many children needlessly die because a mother is not listened to or
discredited.
My son’s body has changed not his personality
or his mental state. The only suppression of his personality is the
debilitating illness he suffers from.
He maybe frozen and damaged but his humour is
intact and from time to time we have still have “Tilly Moments” and by hook or
by crook, I will continue to write our silly happenings to bring awareness to
the lived reality of ME but mostly to bring a smile, a giggle or perhaps a
belly laugh.
