"I didn’t sign up for this." A father's story of hope

Julian Fraser, co-founder of The Almond Tree Foundation, shares how his daughter's uncertain future found him embracing a new approach to life – one that he's now helping others to discover.

I didn’t sign up for this, I am NOT coping

If this sounds relatable or familiar, you are in the right place. When my second child was born some 20 years ago I felt the same. My wife and I were happily married for five years, with a three-year-old son, and a bouncing baby girl was expected to be his little “partner in crime”. But real life plays out differently. In a completely shocking turn of events, our daughter emerged into the world not breathing, and suddenly everything turned on its head.

The next 10 minutes changed all our lives as the subsequent lack of oxygen left our baby with brain damage, four-limb dystonic cerebral palsy and complex care needs. She is, today, a young woman wholly dependent on others for all activities of daily living, including washing, toileting, dressing, food preparation and other personal care.

Our third child, a son born three years later, was subsequently diagnosed with autism and ADHD.

Life has turned out interesting, to say the least.

Desperation and the weight of the unknown

Within a couple of weeks my daughter was sent home from the hospital and that’s when I REALLY struggled to cope. My wife and I were lost, isolated, and without hope. All I could think about was what her future would look like. Would she walk, could she talk, run with her friends, get married, or have children of her own?

The list of unanswered questions was endless. The depths of this new anxious, low, panicked feeling never reached.

Over the two decades since my daughter’s birth, I’ve come in contact with many people who’ve experienced a change in circumstances around the illness or disability of a loved one. Any seismic shift in life very often becomes an incredible challenge to live with, let alone be happy within.

Coping mechanisms and common responses

Call it grief, trauma, or whatever you like, I’ve come to see that the impact of an event like this on our mental health and wellbeing is very similar. The details are unique, but everyone who goes through a medical or health issue like this seems to experience some version of:

Everything was okay, until a HUGE life-changing diagnosis, physical illness or change turned everything upside down, and now, I want my old life back.

I didn’t sign up for this.

I want the child/partner/parent I was expecting/had before back.

I can’t cope with this.

This record very often gets played on repeat, with the pain and bad feeling ever increasing, ever deepening. If this is you, I am sorry for the pain this has caused or is causing. But I must tell you that you are NOT alone, and there IS hope.

Clarity amidst chaos

As the dust settled and our lives moved into a care and hospital expert routine, I could feel the anxiety causing more and more stress. No one seemed to be able to answer my questions or worries about the future any more than I could – which only seemed to make it worse. I started to see that I was only getting more and more helpless.

The best way to describe what happened next is an insight. At some point, I had some mental clarity and realised through internal reflection that my own thinking about the future, about her future, was causing my distress. Simply put, when I wasn’t thinking about her future I felt surprisingly okay – playing with my children and living my life – but when I was caught up in thinking about her I was stressed, anxious and miserable.

I knew that I didn't want to feel that, so I realised I had to do my best to leave my thinking about her and her future alone. And that was the end of this painful beginning.

From helplessness to resilience

I realised that it was my seemingly well-intentioned worrisome thinking about my daughter’s future that was the source of the pain I was feeling. That my thinking, in and of itself, was making me upset. That the situation and circumstances of her injury and what her future was going to look like, was going to be what it was going to be – regardless of any anxiety or worry on my part.

So this became a new path. A path that led to more peace of mind, less stress and, more importantly, a bonus feature. I was able to see and handle all the challenges life was throwing at me from a clearer perspective and state of mind. Amidst the terrible pain, I’d found access to resilience and mental health.

This perspective is the foundation of everything we offer atThe Almond Tree Foundationand the key to finding wellbeing. It's also a recognised and researched educational approach to mental wellbeing, which you can discover more about at the link at the bottom of this article

I have spent the last 15-plus years as a practitioner in this approach and, along with my co-founder Claire Shutes, we decided we wanted to help others caring for or living with disability or illness see this too.

Finding wellbeing despite difficult circumstances

Going through a life-changing experience challenges and tests us like nothing else. As you’ve read, I’ve experienced this first-hand and seen many others who have been through equally difficult circumstances and found peace of mind despite the situation.

As a human being, you are created with resiliency built in. It is part of our default settings. Understanding how our mind works and how our feelings are created applies universally everywhere in every part of our lives. And it is this that offers tremendous hope.

Our resilience; our capacity to withstand or to recover quickly from difficulties, is an innate, inherent part of all of us.

It's always present and available, but somehow hidden and so we live in an often physical and sometimes painful fully immersive reality. Being conscious and aware of our thoughts and feelings means that we, not the circumstances, have power or agency. We are no longer subject to the whims of our situation. We suddenly have a choice where previously we were trapped.

The Almond Tree Foundation offers several videos and materials based on this approach, to either carers looking after someone living with a disability or illness, or the person living with the disability or illness themself. I hope you find it helpful and hopeful.

This story was first published by The Almond Tree Foundation, a UK-based community for anyone who supports a family member, friend or loved one living with illness or disability. Find out about their free-to-access wellbeing courses, webinars and drop-in sessions here .