Tilly Moments

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.