An intricate tapestry of love, resilience, and unwavering connection

People care in many different ways and everyone does it every day, we care for our loved ones, our pets, sometimes strangers, hopefully ourselves. It’s a well-known concept. Being a carer is a little different for some, for me, my journey as a carer started simply as being a parent and morphed into something more, nurturing and guiding my child through life's twists and turns, which happened to involve specialist appointments, therapists and medical interventions.?

The unique and yet common responsibilities of providing care to a friend or relative that has a disability, a chronic or terminal medical condition, a mental illness, a substance use challenge, or is frail and aged is not a role you audition for, nor is it a role many think twice about taking on. Carers do not support their loved one in pursuit of recognition or financial gain; but it's an expression of genuine care and commitment. Moments of stress, isolation, and self-doubt can overshadow the belief that what we're doing is valuable. In my journey supporting to my wonderful child, I've embraced many roles – being his advocate, interpreter, pit crew (I am now a master of wheelchair repair with surprisingly obscure objects), and consistent support system. Yet, amidst fulfilling these roles, I sometimes lost sight of my own identity.

I made choices, stepping away from my career and my social circle and interests, in an attempt focus on walking beside my child as he navigates a world that is not always designed to allow him to thrive as the wonderful funny and engaging individual that he is. Along the way I learned a few things as he shared the world from his viewpoint.? Along the way I have learned to ask why a lot. I ask why, not as judgement, but to learn and understand.? Of course I ask in the mainstream community when he is denied access, but I also ask him, those that support him and I question myself and what I think I know;? Why am making this choice, is it in pursuit of his goals? Why am I helping in this moment and is it needed?? Why am I feeling this way, do I need more information? It has been over a decade of learning to look outside the proverbial box, to acknowledge my privilege and the knowledge I lack as a result, to dream bigger than my expectations. It's exciting, exhausting, defeating and enlightening all at once.

While being a carer is not without its challenges, it's also illuminated by the gift of moments of immeasurable joy and profound connection, there is a unique intimacy in sitting with someone during intense challenges, in witnessing their strength, patience, perseverance, vulnerability or their honesty. While I will passionately share that my child is perfect just as he is, I often wish for a world less burdened by barriers for him, a simpler path. Yet, amidst these hopes, I feel immensely fortunate to be allowed to call myself a carer.

The bond we have forged and the experiences we shared, and all that he has taught me, have woven an intricate tapestry of love, resilience, and unwavering connection, having an indelible and wonderful impact on who I am.