An open letter to my Mum. I cannot begin to imagine what you and Dad went through when I was younger. Having children is considered by many as an absolute blessing, and I am certain that you were feeling quite blessed when I arrived – your first born. As “A little ray of sunshine” played on the radio in the car on the journey bringing me home, it served as a reminder of that blessing.
Early on, you found that I was different. Different good, in that I developed and spoke at an early age (depending on how you look at it, because I didn’t stop!) and different bad. I don’t know how the two of you coped having a baby who was eating and drinking like crazy, but not growing – not gaining weight to account for my food intake. The night that you took me to the Children’s Hospital in Camperdown must have been nightmarish, salvaged in part by the fact that the on-call Doctor was an Endocrinologist, who diagnosed my “failure to thrive” as having type 1 diabetes – a known, but little-understood disease in the early 1980’s. Dad tells me that the two of you looked through the brochures at the hospital to find more information and came across the pamphlet entitled “So your child has leukaemia” and were grateful that you weren’t picking up that pamphlet that night – clearly my ability to see the silver lining in even the darkest of situations was a trait that I picked up from you.
Learning to inject your daughter would have been heartbreaking. Dealing with a disease that you’d soon know as much about, and even more than the Doctors did was what I can only describe as remarkable, but to have that same disease refuse to be controlled no matter what you all did would have been terrifying, knowing full well the impact that this uncontrolled, insidious disease could have on me. My brother came along, as healthy as a horse, and even now, I’m sure that it was a twist of fate that meant you could focus your care on me. Chris is and always has been one of my best friends and my most loyal and fearless protector. That will never change.
Teaching the school staff how to treat my condition would have made for an interesting time – setting an alarm to remind me when to eat, dealing with sick days and being precluded from school camps were only small compared to what was ahead as I entered high school. Getting a call from Prince of Wales Hospital to inform you that I had been taken by ambulance from the SCG with little expectation of my survival would only have been compounded by the fact that I was read the Last Rites – not something that I had expected my “cold” to morph into. Thankfully, I survived and regained my strength to get through my secondary studies, opting to enter the workforce instead of going to University.
I don’t remember telling you that I was having problems with my eyesight, I do remember how much I was burning the candle at both ends though, and so when I was admitted to the ICU and you were called yet again with speculation about the likelihood of my surviving a flesh-eating bacterial infection raging through my body, I know that I really had only myself to blame for living too hard and not listening to my body. You can be grateful for the enormous lesson that those three months gave me, and I often think of my elation upon sending Dad a text saying that I had completed an entire lap of my hospital ward after being told that I would never walk again.
That period of my life brought about a lot of change – my vision was deteriorating, I began requiring the use of a white cane to get around, and yet again, my body was failing me. On the positive side though, I met the man that I would eventually marry, with you knowing just how well he took care of me in my now regular hospital stays. When I stopped noticing blood sugar drops (to the point where I once lost consciousness on a train) and my kidneys began to fail though, you must have been scared that you were losing me. Transplantation and dialysis became my only options, and to this day, I don’t know how you took me to my appointments and spent time with me between dialysis sessions without showing me how upsetting all of this was for you. I only know how upset it made you through the elation and relief in your voice when I called one night in May of 2011 to tell you that I was going to Westmead Hospital to undergo transplant surgery. Receiving that second chance at life was, is, and always will be the greatest gift that I have received, and I live every day trying to make not only you, but also my donor’s family proud.
I so vividly remember one afternoon when I was at your house after my transplant, talking about something that I had just done, and you telling me that you blamed yourself – that you wondered if there was more than you could have done for me as a child, to protect me from the insidious disease that had nearly claimed me for the third time. Mum, there was nothing that you could have done, nothing that you could have changed, and strangely it may seem, nothing that I would change about what I went through. I’m resilient, just like you taught me. I’m stronger than I ever thought I could be, and braver than I give myself credit for. I use my story to inspire others and make positive change. You instilled those things in me. I wouldn’t change any of my story for a second. You did an incredible job.
Love, your little girl xx
The Carousel would like to thank Patricia Scheetz for this article.
Photo by Bruno Nascimento