Living and Dying With Love At The Front Line

I’ve always thought of paid supports as an exchange of resources between equals, whether it was consulting with a doctor, getting a haircut, house cleaning or disability support. And I’ve never really understood the struggle for power by either side, although I appreciate we all bring our own needs and perspectives to paid support relationships. From my perspective, I have the money and need the service, service providers have the skills and passion and need the money. An even exchange. So I learned a lot about other people’s needs and perspectives when feedback from my previous blog about love at the front line was mixed.

I’ve always wanted to write a follow up article but it wasn’t until my beautiful baby, Nicky, died (recently) that I saw the true power of love at the frontline.

Firstly, my definition of love at the front line has evolved. I’ve come to understand that some people requiring disability supports want no personal connection with their support workers. They see attempts at conversation about anything other than the logistics of support intrusive and insulting. For these people, love at the front line might look like old school professionalism with a deep respect for human rights which allows the worker to concentrate on providing exceptional service with no judgement. Some people are better suited to providing this kind of love at the front line than others.

For us love at the frontline for Nicky was different. For us it meant curating a small team of support workers with a connection to Nicky. Each connection was unique and brought something special to Nicky’s life, as I know she did to theirs. We (people with disability and their loved ones) fear the imbalance of paid supports versus informal supports in our lives but for those with profound disability, let’s be real. Nicky required 24 hour 1:1 support - it was inevitable that she would have an imbalance of paid support in her life. All the more reason to carefully select those who cherished her and vice versa.

Nicky’s team of support workers was diverse and through them Nicky built an equally diverse community of connections that made her life rich. These were experiences and friendships we knew very little about, they were Nicky’s personal worlds, distinct from our world as a family but connected to us by support workers we loved and trusted.

Kim took Nicky to participate in her Korean drumming group. Wendy took Nicky to church where she sat in front of a fabulous stained glass window and blissed out to 200 people singing. Abbey took Nicky down to Merewether where they sat in the sun and watch the surfers riding waves. Montana shared her pregnancy journey with Nicky, taking her to ultrasound appointments where Nicky heard the heartbeat and watched the little bud grow into a baby.

If we had had more time with Nicky we would have established a Microboard or Circle of Support for her and there’s no doubt that these people, who loved Nicky so much, would have committed to supporting her for as long as they possibly could, blurring the lines of paid and informal supports.

Since Nicky died we’ve shared hugs and tears, words of love and stories of Nicky with a diverse range of service providers ranging from ICU specialists and Nicky’s long term paediatrician to school teachers from years ago and Nicky’s beloved support workers. In all cases they’ve been grateful for the opportunity to have known Nicky and been touched by her. In our desire for Nicky to be surrounded by love, she’s had the opportunity to make her mark. So that love at the frontline is as much about the love Nicky gave as the love she got.

When we allow that love, either the old school professionalism type or the Nicky type or all the other types in between, we allow deep personal connection and growth and trust me, as a Mum who lost her beautiful baby girl, nothing else matters.