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:
- Food - it can be hard to eat right, but getting bogged down with fat and sugar doesn't help your state of mind
- Exercise - there's a lot of proof that physical exercise helps with mental state of mind
- Know your child
- Know their love language, know how to comfort then and make them feel safe. It also helps when you need to help them feel safe during a procedure
- During the early days, social work pointed out Violet had two worlds, Home and School. Hospital was a new world she'd have to get used to, and she has. We helped make this "new world" a fun place by playing games and having craft. This worked, Violet looks forward to hospital because she knows she gets 1:1 attention and to see all her nurse friends.
- Get off your phone, how else will you get forced quality time with your child? ·
- Know yourself
- I get hangry, it took me a few months to realise that it was a good idea to get up and eat before Violet woke in hospital, otherwise I'd end up grumpy, I've also previously written about the emotions I go though before a hospital stay
- I get comfort in order and organisation. Cancer is neither of these things, but I found if I could get some routine, organisation I'd feel better. One of the ways I did this is having a couple of notebooks that I captured different things: Inspiration, Funny things that happen, Overall dates, Medications, Questions for doctors, Hospital day trip checklist, Hospital admission checklist.
- I've learnt that I enjoy writing out my thoughts, whether I share them or not, it helps me put my thoughts to rest and stops me dwelling on them
- The Red Kite parent connect groups run every second Wednesday are great to hear others are going through similar struggles
- I found Kids Don't Get Cancer is a great book by Michael Crossland
- The internet can be a trap
- I find some Facebook groups and forums can be a bit of spiral of desperation, be aware if you're getting into that trap. I've recently found a good closed 'survivors' FB group, I've also heard mumcology groups are good
- For me, there's been times I've got buried in internet facts, figures, numbers and been overwhelmed - in those time, snapping my mind out of it by saying "my daughter is still alive", "live for now" and "it could be worse" has helped.
- Be thankful for what you have. You're in a country that has health care, your child is alive. Try to see the upside, in a twin room it's unlikely your child is infectious
Yep, this has been a bit of a brain dump, and I could talk for hours. If there’s one thing that helps others then it’s been worth it!