Mother and son Tracey and Taylor Murrin team up to survive the ups and downs of their IBD journey while trying to come to grips with how it feels to be in each other’s shoes.
Taylor's Story
I was 14 when Mum was diagnosed with Crohn’s disease, 13 when all the complications began. I had little understanding of Mum’s illness in the beginning for two reasons. The first one being that this disease is commonly an unspoken issue. The second reason was purely because I did not want to acknowledge the severity of the situation.
I was an only child with a single parent and it terrified me to see what my mum was going through. The situation was made especially difficult because we have such a strong connection and it was clear to me that she was going to hell and back. I could see it, I could feel it, but I would not permit myself to know more as my thoughts were haunted enough already. Despite this conviction, we were in it together, so I made sure I understood all I had to and looked after her to the best of my ability.
Hospitals became a second home for me, which has left me with a deep aversion for them. To this day I cannot step foot into one without bad memories flooding back. I would still take any chance I could to spend time with Mum though, as she is my home. My actual home just felt like a house without her. If I had one wish back then, it was for her to be home. Year after year she was bedridden in hospital and I felt helpless.
There were too many times that I had to call the ambulance for Mum. I can still hear the screams from her room when the pain became unbearable. There was no warning or pattern; it just happened. It was during these times that I felt the most powerless in my life. Seeing the one person I loved the most in more pain than I have seen anyone in before, even until this day, and knowing there was nothing I could do to take it away, was heartbreaking. The blood, tears and bad memories I have of those nights when I had to call the ambulance will never leave me. Watching her leave home in an ambulance never became easier, in fact, it became much more difficult each time. After a few incidents I felt like quite the paramedic myself!
There was one night that stands out in my memory where my mum came out of the bathroom and as I went to check on her, she passed out. She was unconscious for what felt like a lifetime. I think this was when she knew she couldn’t go on like this, for me and for herself. A long exhausting series of operations began.
Music is my therapy. Being an only child, the only person I could honestly confide in was my mum. When she was gone I felt completely alone. Even though she was only a phone call away and was always there for me, I could not bear to add to the struggles she faced day in and day out. She was going through enough already. This was when I turned to music. It started as an escape from reality, a distraction to get my mind off what was happening.
Inevitably, I could not remain silent on what I refused to talk about for very long. I don’t know what would have happened to me if I had not turned to expressing myself through the music I am so passionate about. It is how I pulled myself out of a dark place.
It was while I was in hospital by my mum’s side that I began to write FIBD because I needed to get how I felt off my chest. I tend to keep a lot to myself and I was not ready for the world to know what I was going through, so at that point in time, it was just for me. There was quite some time between writing the first verse and finishing the song. Every time I went to work on it, I would go over what I had already done and would not be able to continue as it was difficult for me to be vulnerable. Coincidentally, I finished the song just before Mother’s Day, so that is when I presented it to Mum. Being the sap she is, the tears flowed after just one line, but when I finished the song for her, the smile on her face said it all.
It was Mum who convinced me that there are other people going through the same experiences that needed to hear this song. During Crohn’s and Colitis Awareness Month in May 2017, I released FIBD, for Mum and anyone going through what she went through as well as for people in my shoes. The reaction I received from the song was beautiful.
The journey Mum and I went on together completely changed who I am as a person. Not having her around for months on end while she was in and out of operations in hospital taught me to be independent. When she was home, I had to step up and be the parent at times, which helped remove my only-child syndrome (not all of it). Although I must mention that even when Mum was in the darkest of places, I was still the number one concern for her every single day. Many past experiences are still painful but when I think back on what my mum and I have gone through, it also grants me the certainty that there is nothing that we cannot overcome. As long as we have each other, we are unstoppable.
Tracey's Story
At first, I did not even know what was happening to me or how to deal with it myself, so as much as it pains me to admit it, I didn’t even think about what Taylor was going through. I think that initially, when you are in such pain and so lost trying to understand what is happening to you, it is hard to focus on how those around you are feeling.
My Crohn’s became aggressive very quickly. When my flares got worse and Taylor had to start calling the ambulance and watch me collapse from pain and loss of blood, the effects on him became more than I could handle seeing him go through. I talked with the surgeon as this was becoming a regular event and told them I could not live with putting my life in my son’s hands. It was not fair on him. As a result, the decision was made to take out part of my bowel. That was my first surgery.
Seeing his face every time I left for surgery was pure hell. I cannot even think of it without crying to this day. That look on his face – trying to appear strong for my sake but holding back tears and fear. I hated my body and this disease for putting him through that. We are extremely close and the thought of leaving him alone terrified me. I did develop an amazing talent for acting. I tried so hard to always smile or make a joke, to wear a mask of bravery. But as he got older, he always knew if I was in pain or just faking being okay. Taylor always tried to be the man of the house and had a strong protective instinct towards me even as a little boy before I got sick. There were many times when the joint pain and arthritis due to IBD was so bad that I couldn’t even get out of bed. That was very frustrating for me, but Taylor would always make sure I was okay and looked after me. He even offered to learn how to change my bag should I be physically unable to – now that’s love.
The distressing situation made him grow up very fast and he had to take on a lot more than he should have. If I can single out one positive outcome, it’s that he is an amazingly compassionate and empathetic person and has a huge heart. Our journey together has brought us closer than I thought possible.
Seeing his face every time I left for surgery was pure hell. I cannot even think of it without crying to this day. That look on his face – trying to appear strong for my sake but holding back tears and fear. I hated my body and this disease for putting him through that. We are extremely close and the thought of leaving him alone terrified me. I did develop an amazing talent for acting. I tried so hard to always smile or make a joke, to wear a mask of bravery. But as he got older, he always knew if I was in pain or just faking being okay. Taylor always tried to be the man of the house and had a strong protective instinct towards me even as a little boy before I got sick. There were many times when the joint pain and arthritis due to IBD was so bad that I couldn’t even get out of bed. That was very frustrating for me, but Taylor would always make sure I was okay and looked after me. He even offered to learn how to change my bag should I be physically unable to – now that’s love.
The distressing situation made him grow up very fast and he had to take on a lot more than he should have. If I can single out one positive outcome, it’s that he is an amazingly compassionate and empathetic person and has a huge heart. Our journey together has brought us closer than I thought possible.
Shifting Focus
When I had my second surgery, my bowel was perforated and I had E. coli, peritonitis and sepsis and I was put into an induced coma and on life support. Taylor’s face is the first thing I remember seeing when I woke up. He was only 14 and he looked so relieved, but so scared.
It is funny what you remember but I recall when I finally got home from hospital, Taylor cut his finger (not badly) and he came to me for sympathy. I recall feeling no compassion for him. I was still so weak and trying to adapt to life with a colostomy bag. It was at that point that I did some serious soul-searching. It is so easy to focus on our own pain and frustration that we forget that everyone is going through their own issues and emotions. That
moment was an important life lesson for me. We can lose sight of how this illness effects the people who support us. They did not ask for this either.
Active Advocate
I have always been more at ease looking after others than being looked after myself, and when I started to feel a little better, I looked into how I could help other people and spread awareness. I had personally never heard of Crohn’s and colitis and found that most people when I told them what I had, looked at me quite blankly. That is when I put my hand up for the CCA China Challenge. I travelled to China with the most amazing group of people and we trekked along the Great Wall and raised money for IBD. I have had some other events that I have put together like Cow Poo Bingo and High Tea for IBD and I was a finalist in the Australia and New Zealand Great Comeback Awards. I have attended some seminars and spoken about what it is like to have a bag.
One of the most rewarding things that I have done to date is to mentor at the CCA Queensland Youth Camp. I was diagnosed at 35 and I have always thought that since it was challenging enough as an adult, how must young children feel going through this roller coaster! I have met some amazing and inspirational young people and their beautiful families at these camps that have strongly impacted my life not only as a fellow IBD’er but as a human being. They are such strong and incredible kids who have been through so much at such a young age. But regardless of all my fundraising and awareness efforts, it was my beautiful son who did something so amazing that it became the most incredible gift I will ever receive.
Thank you Tracey!
