READJUSTING LIFE PLANS WITH A CHRONICALLY ILL CHILD

Award winning image for the 2020 Portrait Masters When I was 9, Rebecca Conci, 2015

When I fell pregnant with my first baby girl I was filled with anticipation of our next step in the journey of life. How I was going to decorate her room. The stories I would read to her, the world I would share with her. I couldn't wait to hold her tiny fingers in my hands, and listen to her noises. I would daydream about how life would be with our family going from two to three. Not at any point did I dream about illness, financial hardship, pain, tears, medication, tubes, needles, or having to hold her down while lines were inserted, and dressings were changed.

The reality of what life has become for us today is so far removed from the version I saw all those years ago. Coming to terms with this reality hasn’t been easy. The girl's illness has never been clear cut. For 12 years the girl's disease that slowly ravaged their bodies remained undiagnosed. When the Murdoch Childrens Research Institute diagnosed the girls only a few years ago it gave us a gene and not an answer. We had information on one other family in the world who seems to have the same missing gene, but we were far ahead of the stage they were at, so the girls have become a case study. The study is for research and to help those who may appear with this disease in the future.

My girls became a case study…. In fact the news that ‘we can’t help your girls, but they will be able to help others’ was delivered in a room at Royal Children’s Hospital, and left me speechless.

There is no treatment, no cure and no telling us what the future will hold for them. Aside from the knowledge that the one other family in the world has already lost their oldest who was younger than our oldest is now. As more organs in their bodies slowly fail, my heart breaks. It aches with every piece of news delivered, sometimes in a matter of fact way. After all, this is a multi organ failure disease and this is just another organ…. As choices are taken off the table for their futures, it takes time for the dust to settle and for me to find my strength again. Often trying to make sense of the why behind it.

Life… it doesn’t always work out the way you think it will. So over time, again and again I have adjusted to the news and readjusted our/ my life plans.

When we received the news that the girls had this gene and the prognosis that came with it, we wanted to share the world with them. My husband and I have never travelled internationally much, but I had a strong urge to share with them the difference and experiences that were beyond our own backyard. To soak in the culture, acceptance, and the acts of human kindness all over the world. So we started to research, book and get excited about the places we would go. This came to a crashing stop when we could not get the girls insured to take them overseas. In the state where their bodies exist no insurance company was going to take the risk.

It was something I actually hadn't considered. I guess I just assumed we would be able to take them to the safer countries of our choice. The realisation of these constraints were confronting. It was a constant reminder of the girl's illness, even when they were in a good space. Australia does have a reciprocal agreement with 11 other countries but this only covers some costs, and we just couldn’t take the risk.

Knowing we weren’t able to share an overseas trip with our children, we decided we wanted to share the open road of Australia with them instead. So we decided to take the girls camping after the first transplant.

Nose tube, t-tube, many meds, fragile big girl with mobility issues, and her two younger sisters in a camper trailer.

It was liberating. The fresh air, the connection, the adventures, mother nature and fun. I could get a walk in for myself, and visit the ocean. Just being away from the many appointments, and the external expectations for a few days really allowed a freedom I was craving for myself and my family.

This was just the start. We knew the camper trailer wasn’t for us, so would rent caravans. Many of our friends had new caravans, but a new van was just beyond our price point. This is something my husband and I had done when we were younger. We got engaged and married up above Cairns, and even moved there for our eldest to start prep. We moved with two cars, two trailers and two young children, and loved every moment of it. With the need of a tertiary hospital ( a hospital that provides specialist care, including complex medical procedures) we knew we had to move back to Melbourne.

Knowing the excitement and adventure the open road brings, we bought a beautiful 1969 Vintage Viscount. We called her Allie May, after my nan who had recently passed. We fixed her up and turned her into a home away from home with triple bunks and a double bed. A very small kitchen, a cupboard for meds, a gorgeous kitchen table, and desire to travel. It wasn’t new, or large. It didn’t have anything fancy like our friends around us, but she was beautiful. With her has come so many incredible memories, that I wouldn't swap for the world.

Before and After Photos Allie May

From Allie May we have sat under the Milky Way, explored pink salt lakes, watched as the sun set over the water where dolphins played. We sat on the coast together wrapped in a blanket and watched fireworks on New Years Eve, and travelled along some of the most beautiful coastlines in Australia. We still have so much to see and explore, and together make it a yearly priority. We travel when we can, to a different destination, sometimes with friends, and bring home with us unforgettable memories and photos.

Allie May, Halls Gap

I remember coming home from the hospital after buying Allie May, and delivering the latest news to my husband while hiding behind the van away from where my children could witness my pain. This latest life-changing organ failure left me grieving for a long time. Time I needed, and still need. But with it came a lesson. A lesson in opening up to many other possibilities, although they weren’t what I had originally envisaged.

Having children who are chronically ill was never something I thought I would be managing. I never saw myself writing a blog for families who have ill children, or be connected in the circles of organisations who help to take care of these children. My reality these days is that I cannot return to a career I worked hard in for most of my life. As a family our financial situation was helped by a fundraiser, and the generosity of strangers. Without this we would have lost everything, including our home. I now survive on a carers payment instead of a good wage. We don’t have options the way we used to. What I used to believe was the picture of success is very different to the picture I see today. - financially, physically, mentally and materialistically. And not everyone around me can understand this. I see this shift in perspective as a gift.

With every heartache comes an adjustment period. With every tear comes a chance to learn. And with every challenge you are given, comes an opportunity for growth. So take it. Allow yourself the time to process and feel, and grieve. But never let it stop you from creating the life you want. Even if it's adjusted from what you had originally thought.

“I can’t change the direction of the wind, but I can adjust my sails to always reach my destination” H Jackson Brown Jr.