A Carer’s Whispers

Carer’s Whispers

“Life is 10% of what happens to me and 90% of how I react to it”

John Maxwell

We have two young children with a rare disease that severely affects every facet of their development be it, mobility, vision, self-care and communication. They are totally dependent on us to provide that day-to-day care for them. Whilst I love my children more than anything in this world, the truth is that being a parent carer is the hardest job I’ve ever done and most days I just want to quit. Everyday I find it challenging me on all levels, physically, emotionally and psychologically it’s so unrelenting and the only thing I can change are my thoughts around all of that.

Even when both my children were alive, I’d feel my heart drop from my immense grief from moment to moment through the day. I’d often find myself getting emotionally distressed thinking about our future and worrying about if I was doing enough for them to improve their quality of life. I so desperately wanted to have family holidays or even just to go out with my children but their day-to-day health was so unpredictable it made our choice of outings limited to few and far between. Managing a life around both children with a life limiting condition was exceptional difficult on many levels. As their condition progressed our freedom regressed and sadly for a long time I could only duck out quickly for an hour or so to get my fix on what the rest of the world was doing, meeting a friend for coffee or lunch, often feeling the pressure of not being more than twenty minutes away in case of any emergencies at school or having to be home to nurse them in their day-to-day care. Due to the unpredictability of the boys health we literally lived hour by hour, day by day, prepared for the worst, hoped for the best. Our boys have taught us a valuable lesson of living in the moment and that ‘NOW’ is the only reality we have. The rest is all thought and you can change past and future moments into any way of thinking.

“Living in the moment is more than just a cliché. It is precisely what we need to do in order to preserve our sanity.”
― Charles F. Glassman

Over the years I’ve became very aware of what was important to me, I’d become very protective of my energy levels, recharging with friends and family, exercising regularly to uplift my mind-body soul. I want to be happy and have an uplifting life and now more than ever I focus on what makes me feel good, in my home, in my body, in my life and in my mind. I’ve battled with chronic depression for years as I often feel deep sorrow at being helpless and hopeless with my children to beat their disease. Every day we watched them suffer from increasingly relentless seizure episodes and nursed them through the several hours or days of recovery that would follow. On numerous occasions we rode the emotional roller coaster ride of not knowing how much longer they had to live and endured the heartbreaking process of making plans with the palliative care team to ensure they are comfortable and pain-free. Sometimes living in the same moment for too long can wreck havoc on your nervous system and so its time to get out recharge and create a new moment.

Stress is the distance between where your thoughts are and where your life is happening.

― Dean Jackson

My resilience lays in making sure every day I take time for myself, I try to set achievable goals outside of my emotional chaos. I’ve been becoming more mindful about how I think about situations in my life, how I want it to look and how I want it to feel. Yes some things are totally out of my control and as a mother I feel deep sadness for being helpless to change those things, I remind myself to surrender and to accept that, any thing else is soul destroying. I focus on controlling what I can control and that is, allowing myself the time I need everyday to become mentally, emotionally and physically strong and fit to face my lifes challenges, this ensures my children have the best quality of life I can give them and they have the best version of me as their mum. This practise, I’m sure has saved my sanity on many occasions. When Im feeling overwhelmed, I pause and ask myself what can I change here and now, then I get busy doing that. I’ve found it really useful to talk to a psychologist about managing my grief and depression and I did so on and off for years even before I lost my beautiful son William. From time to time over the past 9 years I’ve tried antidepressants as I’d felt a real shift in my emotional stability as a result of my nervous system being under constant stress, I could actually feel the chemical imbalance in my brain and I knew I was unwell. With in a just a few days I was feeling better and was able to take control of my thoughts again. I don’t feel I need to take antidepressants on a regular basis but I know at any time when my mood is exceptionally low I can ask my doctor to write me a script for them.

“The primary cause of unhappiness is never the situation but your thoughts about it.”
― Eckhart Tolle

Control the controllables….

Exercising for an hour and daily is my overall antidepressant of choice, many years ago it started with walking and then progressed to running. I say Running ‘saved me’ it gave me a different kind of personal challenge which I could focus on and the distraction of having a new passion in my life was so beneficial on all levels. And whats more walking and running is Free!

If your feeling overwhelmed exercising no matter how fit or unfit you are, helps give you back some control in your life, it can really give you purpose and a reason to get up out of bed and feel alive again. Yes it feels uncomfortable at first, embrace and accept it but know that each day you can trust it. If you stick to it, you will feel the incremental improvements either in your body or mind, you are only limited by what you tell yourself.

What Makes You Happy? What Makes You Laugh? What makes you feel love?