CELEBRATE SMALL THINGS WITH CHRONICALLY ILL CHILDREN

There is a saying that ‘life passes you by while you are busy making other plans’. Building for the next step, and being so focused on what that next step might bring. In the meantime life is happening all around you. Having a seriously ill child makes you stop and see the small things, possibly things that were taken for granted. While watching my children become more and more unwell, the simple things in life were slowly being taken away from us one by one. The things we were building for stopped, and I quickly realised what the important things in life were. As the girls' bodies were slowly giving in, our whole lives were changing. Our lives were completely, and literally falling apart around us. Neither one of us could work, so we were using our savings that we had put aside for the house that we were in the middle of building, whilst we were living in a cabin. Our family was being pulled in all different directions, with two parents needing to stay with each of our ill children, our youngest at times was sent to her grandparents as she wasn’t allowed to stay at the hospital with us. But there was one thing I held onto dearly. Love. The ability to find it, see it, and create it in any situation. We had gone from building our future, loving life, to living at the hospital, with one seriously ill child, another on the way and a three year old. In difficult times both the girls were admitted at the same time. My husband and I would go from room to room, and take shifts, whilst balancing, and doing our best to parent our three year old.

As my eldest was doing her best to recover from a three month admittance, I knew my other was going downhill rapidly in the room down the hall on the same ward.

I would talk to the girls about what their superpowers were, and then helped them to find and see that power in themselves. This gave them strength when they needed it, and when I needed them to be strong. It also created a strength between them, each knowing what they could do for their sister to help ease the load.

FIND THE MOMENTS, WHATEVER THE SITUATION

There were soul wrenching times, when we weren’t all together. But for the most part we spent a lot of time in a hospital room, or living at The Ronald McDonald House. I very quickly learnt how precious life is, and not to discount the very small things. While sitting beside my children in ICU at different moments I would talk to them about our everyday moments to give them strength, fill their soul with love and to remind them never to give in.

When I would walk back to The Ronald McDonald House late at night with my other children, I would hold them close. I would watch as they would do cartwheels on the grass, and run, as they were free from the hospital room. Although my heart was sick with worry for my other still up high in her hospital bed, my children were just that- still children. And this was not the time to stop them from having fun. We would sleep in one room together and I would read to them stories of different beautiful adventures. Of open paddocks, of animals, fairy tales, connection and love. And although those seasons come and go, the power of connecting in these everyday moments will stay close to my heart forever, even when they are as strong as they can be.

CHOOSING AND ACKNOWLEDGING

Maybe it's the constant possibility of the hospital knocking on our door, or the possibility that tomorrow everything could start to fall away, but knowing how important these small things are I choose to acknowledge and celebrate them. We celebrate different things to the typical family, and the way we celebrate can vary. Often the achievement themselves comes with the reward, and other times we plan and celebrate.

We celebrate a pain free day in our household, we celebrate solid poo, a peg removal, not vomiting when choking on medication, or vomiting into a spew bag, instead of wherever it lands. Jumping, running, the ability to ride to the top of a slope without being in too much pain. We celebrate school, and being able to attend, sleepovers, friendships, and anniversaries of transplants. We celebrate overcoming a small bug without being admitted, and not crying during a blood test. We love getting away, even though we cannot venture far. None of these things we take for granted.

But more than these bigger things, I acknowledge, and embrace the everyday moments. I choose to listen to their voices, hold their hands, watch them as they play, listen to them read, and be a part of their dreams, goals and stories. I CHOOSE to hold them every night, and every morning and make these small moments the big ones.

CELEBRATE DIFFERENCE

I swore early on that I would never be the mum who defines herself by the illness of her children, and now I make a point of it. Although I swore I would not let this change me, fighting against the reality of how we have to live is different. And I realised that surrounding myself with people who don’t or won’t understand makes life harder.

My ill children will never be able to accomplish the same things that others can. The future I thought I wanted for them is no longer. And whether this comes all at once, or over time, the news and realisation often comes with a lot of pain. That the focus can shift from what society deems as important, to what you know is important to each child. But the society you choose to surround yourself with can make this easier or harder. There are now many conversations I can just no longer relate to.

When my eldest graduated from grade six, she had just got out of hospital again, and had missed the last month of her precious primary years. Every child in grade six delivers a heartfelt speech to parents, and the school committee and anyone else who attends the graduation. When she delivered her speech she acknowledged how lucky she was to have been able to attend the graduation. She spoke not about her academics, which had fallen behind, or the years spent in primary school, which became a privilege, but of the difference in all she had learnt, and accomplished. She never won a cross country, she was never ahead of the class and for most part struggled both academically and socially once she became seriously unwell.

She did however learn how funny she was under nitrous. How to swallow over 60 medications a day, mostly without vomiting. She learnt the difference first hand about a nose tube, a peg, a T-tube, a catheter, a central line, a pic line, TPN and how incredible it is when you can no longer eat. The difference between IV300 and tegaderm, transfusions and infusions. That she had also met some of the most incredible people along her journey. That she had started donating specially made bears that she had helped design to seriously sick kids and was still here today thanks to the medical and nursing staff at RCH Melbourne. And how grateful she was for organ donation. Her speech was a knockout. It was raw, emotionally strong, and soft, and spoke of both innocence and a knowing beyond her years. There were tears and laughter in the audience, and left many parents thinking about her journey. I was so incredibly proud of her for not focusing on what ‘could have been’, but for embracing and celebrating her own unique differences.

“Why fit in when you were born to stand out.” Dr Suess