This post is a little traumatic when talking about my brother, proceed with caution.
So we’ve covered the horrible step-father, getting kicked out of home and the plethora of health conditions, now we’re going to cover my brother dying and then write about my anxiety, depression and my suicidality in part 3.
My brother dying:
I was at the pain clinic for the day getting all my assessments done and I was talking to the psychologist and she asked me if my brother dying was a shock to me and I just thought what a stupid question that was to ask. No, I totally knew Chase was going to die and it wasn’t a shock at all (include heavy sarcasm when reading that). Like seriously? Who even asks that?! Of course it was a shock! The psychologist also asked me to explain what it was like Chase dying, it was not only a shock but a heart breaking experience that I will never ever be able to articulate and understand. I will never be able to explain how it was to watch Chase loose all his motor functions and the ability to walk, talk, eat and eventually breathe. I will never be able to explain what it felt like when I literally saw him take his last breath or what it was like to see his little blue coffin with superheroes all over it get lowered into the ground. Or how he looked before we nailed the coffin shut. Those memories will haunt me for as long as I will live. So yes psychologist lady, it was a complete shock when Chase died.
On May 31st it will be 4 years since Chase died and I still haven’t fully come to understand what that means. I’ve mentioned Chase before and a few memories but I thought that I will write down the whole experience in this post.
Here it goes:
It was a Thursday evening at home and Mum had noticed that one side of Chase’s face seemed to droop a little bit. She then asked him to do some pushups and he couldn’t do them (he always could, he was a strong little man) and when he stood up he was all dizzy and nearly fell over. This was not normal behaviour and now we were all a bit worried. The next day (Friday) Mum took him to the Royal Children’s Hospital to get him checked out. She was there all day and all night. When I got home from school on Friday Michael had to go into the hospital because Mum called him telling him that a neurologist and oncologist wanted to talk to them because they had found something on Chase’s MRI. Michael drove us all in (Michael, Dusty and me) into the hospital and we met Micahel’s brother Paul there. Michael left us with Paul and went to go find Mum.
I didn’t know what was happening and what was wrong wth Chase or that Mum and Michael had to have a meeting with the oncologist and neurologist, I learnt this later on when Mum told me. Paul took us (Dusty and me) to McDonalds and then to get ice-cream at the Docklands. Paul wouldn’t tell me anything that was happening and after the ice-cream he drove us home. I had to go into the Royal Children’s the next day (Saturday) for an MRI of my shoulder. Paul drove us in that morning and we met Mum in Chase’s room. I still didn’t know what was wrong. Mum was crying and Chase was just sitting on the bed playing with one of his toys. I got the MRI of my shoulder done and I drove home with Mum and Chase. In the car when Chase was sleeping I asked Mum what was wrong and she started crying again, I asked if Chase needed brain surgery and she said no. She then said to me “Maddy, Chase is VERY sick.” I then started crying also and asked if he has cancer, Mum said yes and then I yelled out “NO” and told her that I thought she was lying. Mum said she was sorry and that she would tell me everything tonight. We went home and Chase wanted muffins so I made him some muffins. That night when he was asleep Mum told me that Chase had Diffused Intrinsic Pontine Glioma (DIPG) and that it was terminal and that he didn’t have much longer to live.
My aunty drove up from her farm Sunday and we had all our family come over. I took Monday and Tuesday off school. On Tuesday Mum and Michael went back to the hospital to talk to some more doctors about what could be done. Basically nothing, Chase could’ve had radiation and chemo but it would’ve been for every day for 6 weeks and it would’ve only made him sicker and not actually help anything and even if it did shrink the tumour a little bit and give him another few months he would’ve spent those months in hospital incredibly sick from the chemo and radiation. So Mum and Michael decided against doing any of that and took him home: plus Chase hated hospitals.
I went back to school on Wednesday and got the school counsellor there to tell my home group and teachers what was happening. We didn’t tell Chase what was happening, he was only 5 but he was so clever and smart that he knew what was going to happen to him anyway. He started asking Mum questions about death and what happens after you die which was weird because he had never asked those questions before and he was only 5 and what 5 year old asks about that stuff?
We had an early Christmas and birthday because we didn’t know if he was going to make it past his birthday and to Christmas. The Make A Wish foundation funded the birthday party for Chase. They hired a limo, had people dress up as superheroes, rented out Ace Space, got a birthday cake made and presents donated. They did a great job and I thank Make A Wish for everything that they did.
Chase started deteriorating pretty rapidly; from diagnosis date to the day he died it was 12 weeks. March 8th to May 31st. Chase lost the ability to walk so he had to be carried everywhere and then the ability to talk, swallow properly and then to breath.
I was still having to go to school and do all that, that was because of Michael. If I had it my way I would’ve been at home with my brother who was going to die and spending as much time with him as I could.
Chase only really wanted Mum throughout the whole thing. She was amazing and I will never know how she did it. She literally became an angel and looked after Chase with so much love and support. My heart aches for her when thinking about everything she went through.
With Chase only wanting mum it was hard for me to spend any time with him. I did teach him to play crocodile crocodile though and that was nice. I don’t resent Mum or Chase for that, but it does hurt that I wasn’t able to spend as much time with him as I would’ve liked…
Now to the hardest part, the day he died:
It was a Thursday and I got up to go to school. Chase wasn’t awake when I left so I don’t even remember what the last thing was that I said to him or did with him was.
I came home from school and the palliative nursers and doctors had come during the day when I was at school. When I got home from school Chase was in his bed with a whole lot of needles in him for the medications they put him on (pain meds and stuff like that). I knew then that he wasn’t going to be around for much longer, I just didn’t know he was going to die a few hours later. The offical date and time that he died was Friday, May 31st 2013 at 12:12am.
At around 6pm on Thursday his breathing started to change and mum rang the palliative care team. They listened to it over the phone and told us that it won’t be much longer, I sat on his bed for most of the night holding his hand while mum was laying next to him. I also took a lot of pictures because I knew this was the last time that I would be able to. Chase was unconscious the whole time.
Mum stayed with him in bed while Michael, Dusty, Mum’s friend Anna, Dusty’s grandparents and me watched a movie in the lounge room. It wasn’t my choice to do that but anyways…
At 12:10 am (Friday morning) Mum yelled out Michael’s name and we all went running down to Chase’s room. Chase had died in Mum’s arms. We all stood there crying and watching him. He then he took a breath; the hope that I felt in that moment was like nothing I will ever feel again. I can’t even explain it, but then he breathed out and didn’t breath again, that was at 12:12am.
I literally saw my brother take his last breath. I can’t tell you what happened after that as I don’t really remember. I do remember Mum and Michael washed him and put him in new clothes but I don’t remember much else. I do remember that I finally went to bed at 4am and when I woke at 8am, Anna and I went and drove to pick Holly up (she was living in a share house somewhere). At 4pm, my friend Casey came over and she spent some time with me while her mum spent time with my Mum.
Mum and Michael decided to do the funeral themselves and not take Chase to a funeral home as they’re evil and don’t take care with people’s loved and departed ones. They hired a mobile fridge that was plugged in in the carport and put him in his little coffin and that’s where he stayed until Wednesday June 5th, 2013 when we buried him.
There were a lot of people at Chase’s funeral. It was no where near a ‘celebration of his life’. It was depressing, sad and tragic that we were having to bury our 5 year old son and brother. Mum wrote his eulogy and the funeral speaker lady read it out. I wrote a poem and I read that out myself.
Here it is:
Our lives go on without you Chase but nothing is the same.
Our broken hearts are opened wide when someone speaks your name.
I don’t know how we’re going to live a life that you’re not in and never again hear those superhero songs you loved to sing.
You’ll always be my baby brother that I kissed and held so tight and that is what I think about in the coldness of the night.
I love you Chase
After that was done we carried his coffin over to his grave and lowered him in, we then each got a handful of dirt and threw it on. There was a wake afterwards at the pub, we went to that and at around 4 I got a lift home from my neighbours. The next Monday, Michael made me go to school and we were made to continue with life as if nothing had happened and that we didn’t just watch Chase die and bury him. I still can’t believe Michael was able to start again that soon afterwards.
I had a really hard time at school with friends and classes. I spent a lot of my time in the Wellbeing Centre crying and trying to figure how I was meant to go on with life without my baby brother next to me.
I love Chase so much and he was my best friend. He was the sibling I connected with and got along with the most. He was my personal superhero and I miss him every single day. I think about him every day and every day I wish he was still here with me. Chase shouldn’t have died, he should still be here growing up and living and experiencing everything life has to offer. He would be 9 now if he was still alive and in primary school probably being the smartest kid in his class. He was so smart, loving, caring and such a beautiful soul. He was so wise and everybody who met him felt like they had encountered something special. Chase was everything and he was taken away by cancer. I still ask so many questions to myself and to my counsellors about why he died and why it was him and I will never get the answers that I’m looking for. I will never know why he died or why it was him. Chase left a big hole in my heart that will never be filled and I will continue to miss him and love him and cherish the memories I do have with him.
Chase will forever live in our hearts and he will never be forgotten.
My psychologist gave me a quote when I first started seeing her from Jon Kabat-Zinn and that quote was: You can’t stop the waves, but you can learn to surf.
I honestly think that that quote covers grief. Grief does come in waves and I am learning to surf those waves and to try not to let them drown me. Grief is so incredibly complex and no one can compare you for what it feels like.
I love you Chase.
Keep surfing everyone,