How Do You Do It

How do you tell your child they are dying? Six months prior to Violet’s death we were told there were no more options to treat her cancer, she was palliative and had days to weeks to live. It wasn’t as simple as that, there were options, but none were great, all ended with death. There were two key reasons for this; firstly the neuroblastoma had spread to the meninges of her spine and brain, which there is limited treatment options for (in initial or early relapses) in the US, secondly her marrow was so fatigued it would not recover from heavy treatment. ...

A few things happened recently where the penny finally dropped for me. I was talking with someone going through a tough time, they were asking me what to do. I said “Breathe”. They responded “What?”. I proceeded to explain as simple as it sounds try and slow your thoughts and focus on what’s happening now by just stopping… And… Breathing… Slower. A few days later redkite was asking what would you say to parent who was just diagnosed. My response was, Breathe. ...

One of the things people said earlier this year was “I don’t know how you’ve done it”. To tell you the truth, neither do I. If I think about it, if we didn’t, who would? The reality is we were in survival mode. I started these posts around the new year when I was reflecting about our “Christmas Break”. It was then I realised we were full, we may have “done it” but we couldn’t take/give anymore. We’ve days we’re feisty, irritated and just need space/time/quiet to get through. I’d say Christmas was ok, it wasn’t good or great, its hard just having other people in the house, let alone for Christmas celebrations. It got me thinking that it’s hard to convey where my capacity is at and it’s unlikely others will ever understand and reflect on why I feel so full and overwhelmed. ...

I read a post of a friend waking at 3am, thinking/worrying about their child and it reminded me of the early days with Violet. I wondered what would have helped me in the early days. The top 4 things that keep me going are… Music - much can be said about music, I have a couple of playlists My uplifting one - I listen to this in the car to/from hospital Violets fun list - stuff she can dance and sing to when she's up to it or we're traveling in the car Violets lullabies - stuff she listens to go to sleep Inspiration - Pinterest is a great source for quotes images etc. Breathing - the meditation type stuff I learnt at a mens group has helped heaps. I also watched a youtube on "the third space" it's been good to context switch and focus - reflect - rest - reset Mates - some people will never get it, but good friends have allowed me to just call them and blow off steam For each of these I have a strong God element to (as I shared in Part 1), which for me takes a huge burden away, but I know for some people that's not the case. Other things that help, that vary on importance depending on the circumstance are: ...

"it takes a village" I can say I didn't know who was in my village until Violet got cancer. Thinking about it, the village is made up of multiple communities, who have all had different impacts: Family - from visiting, to living with us to providing great support. Someone really enjoyed the facetime calls too Friends - Surprise survival packs, car parking cash and random supportive texts! School - WOW, food, picking up kids... I honestly didn't know what chappy's did, but now couldn't be more grateful Church - prayer, food, house cleaning, lawn mowing Work - passing around the hat, getting extended time off work, complete understanding when returning to work and supporting fundraising efforts Hospital - nurses, doctors, occupational therapists, social workers, so many passionate people we got to know. Paediatric oncology community - No one really knows what you go though, except those closest to the same fire as you. We've met some incredible parents in the oncology wards!

This time around on the HDYDI (How Do You Do It) series I focus on me, a man, and what I think has helped me along the way. My hope is this will give other men ideas on how they could set themselves up with the support they need to “do life”. I credit a lot of why I’ve been able to cope to something I’ve gone to over the last handful of years, a mens night. It’s a simple way for blokes to get together and share life. The easiest way to explain what I’ve got out of the group is by describing how it’s run. It’s evolved over the years, but in it’s current form this is what goes on: ...

When Colleen and I got married we became equal partners, for better for worse, till death do us part. We made the commitment to stick by each other and see things through, no matter how difficult they get. We also come from good stock, parents and grandparents setting a fabulous example with marriages decades long. There’s no doubt Violet’s cancer has stretched us waaaay beyond where we ever thought. But our love and commitment for each other has never been deeper. Our faith and how its grown and been shared through this has played a big part of this. Our marriage is about equal partnership and respect for one another, male chauvinism has no place and no task is gender specific cooking/cleaning/mowing/hospital visits is shared.

A lot of people commented on how strong we are through Violets cancer journey; one of our friends early on created this artwork which encompasses one of the main feelings we had. We are carried by our Lord and Saviour Jesus Christ. I had read about footsteps in the sand and seen verses about being carried, but never experienced it until now. I don’t believe God causes the trials/challenges in our lives but he carries us through and promises greater glory on the other side. I’ve previously posted a tongue in cheek look at the many verses about this. ...

We’ve been asked many times how can you help. We’ve actually been overwhelmed with support, so much so that we created a facebook group that is no longer use to organise everyone. The reality is, for now, we feel we have enough physical support (a couple of meals a week, lawns being mowed etc.). Spiritually, words of encouragement and prayer will never turned down. Follow my Pintrest board or Spotify playlist to see what I’m reading or listening to. Prayer points and focused prayer around the following is appreciated: ...