• Rebecca Conci

HOW TO KEEP A PIECE OF YOURSELF WHILE RAISING A CHRONICALLY ILL CHILD

Watching the sun rise on the most eastern point of Australia

Having chronically ill children means just that. It is ongoing, relentless. Losing your identity to motherhood can be hard, but even more so when you have one, two or more children who are chronically ill. Since my children have become chronically unwell I have seen my life turn in a direction I never envisaged. Sometimes finding the silver lining when all has turned to disarray can be quite difficult. As illnesses can come and go in seasons, some are simply more difficult than others, and some of these seasons don’t allow time to consider yourself. But when the storm passes and you get some well needed time to reflect, you may find yourself thinking of the person you were before, and for many of us it's the person and life we clearly can no longer return to. The relentless caring and juggling for all those around you can leave you lost in a world you no longer recognise.

I found that the world I had worked my whole life to build had disappeared overnight. The stability of what I knew and what I was heading for had blown away, and is now no longer within reach. I knew that working was out of the question. I knew my children would never be the same. I knew that our lives would now be filled and exist around the hospital. I knew we would never be financially stable as we were before, and there was a chance we would lose what we already had. That the circles I now understood and related to, were not the same as before. It made me question who I was……. now. I was filled with a sense of guilt, as I was confused with these emotions. I was so extremely grateful to have all my children, after all we had been through. The times I held my babies and thought I was going to lose them, the meds I would need to give, the tubes that required caring for, cleaning, and dressings changed, helping them get through their pain, attending appointments, wiping their tears, whilst trying to hide mine, the constant cleaning up from all the vomiting, the assistance they needed for rehab to help them walk, toilet and shower again, the feeding through tubes, and mixing of formula, helping them through each and every surgery, holding their hands, or holding them tight for the hundreds of blood tests, preparing for all the admissions, the travelling to and from the hospital, the weight of keeping them going, was there even any time for me……... and should there be?

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