By Adele Maree

Four and a half years ago my world was turned upside down. I was the mother of one healthy six-year-old boy when my second beautiful son was born.

Only it wasn’t long before I started to discover that he was not as healthy as his elder brother. Their lives would not be anything alike, and mothering as I knew it would never be the same again.

I would not get to watch him play soccer each week. I would ‘get’ to watch him work hard in therapy. I would not be inundated with birthday party invitations, but rather overwhelmed with appointment letters from doctors.

A shared hotel room on holidays would be replaced by a very small room, for a very long time, in the children’s hospital. Instead of being able to get excited for his first haircut I would be terrified, holding him as his hair was shaved in preparation for brain surgery.

I became the mother of a child with a rare disease and I was so busy fighting for my child’s needs that I was neglecting my own.

In my fight to save him, I started to lose myself. I struggled with my physical and mental health.

The back pain became too much, the anxiety overwhelming. I was lost in darkness and needed to find not just a way out but a way through.

A way that would allow me to not only care for my two boys but also care for myself.

Adele on staying strong through the toughest of times.

I started on a journey to stop being so selfless and start putting my oxygen mask on first. I began to exercise (slowly at first), practice mindfulness, eat well, drink less, cut back on coffee.

I learned to be vulnerable and acknowledge my mental health issues in seeking out help.  As I did this I found myself being able to cope better and better able to accept living with constant uncertainty.

As I started to experience less darkness and greater optimism I began to give myself permission to hope and dream.  I became more open to allowing pain and joy to co-exist.

I discovered that even in the toughest of times we can find the most unexpected beauty. But that beauty only became visible through dedicating time to look after myself.

Putting self-care first, Adele says she, “began to exercise (slowly at first), practice mindfulness, eat well, drink less, cut back on coffee.”

Without self-care I was too angry at the world to really see the gift that had been given to me.

Without self-care I would have become too tired to hold him long enough for his pain to ease and to feel him relax into my arms.

Without self-care I may have been too exhausted to appreciate the smiles he gave me at 2am or his special way of asking for ‘more’ kisses.

Self-care has allowed me to be grateful for every moment.

Self-care has allowed me, and we as a family, to keep on living, while we move toward a more certain outcome.