How have you done it… Really??

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.

If I think about how have we’ve done it, I can think of a number of things that have helped. I’ve split them into individual “How did you do it (HDYDI)” posts:

  1. God
  2. Marriage
  3. Mates
  4. Community
  5. Tips I’d give myself at the beginning
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Tips to other Parents [HDYDI – Part 5]

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…

  1. 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
  2. Inspiration – Pinterest is a great source for quotes images etc.
  3. 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
  4. 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!

Community [HDYDI – Part 4]

“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!

Mates [HDYDI – Part 3]

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:

  • First rule of mens night: don’t talk about mens night… sort of .. I couldn’t help but mention and adapted quote from Fight Club, the real rule is everything that’s said at mens night is confidential, it’s a “circle of trust”, guys need to know what’s said won’t be turned into gossip and go beyond the group.
    • For me, this is very important, I’m introverted and private, I don’t openly share the way I’m feeling about everything, it’s who I am. In the early days of Violets treatment, it was these guys I turned to for prayer and support, it was these guys I called and yelled at when I was frustrated, it was these guys I knew I could trust.
  • Opening – The night is started with chairs around a fire pit, a kettle and some biscuits. Men arrive, grab some tea and biscuit and grunt/chat about how they’re going.
    • For me, this sets the scene, there’s something primal about fire, it’s good to keep warm, you can cook on it, it’s good to stare at and loose time.
  • Check in – we find a seat and someone introduces how checkin works. A talking stick is placed in the middle (not in the fire). When men are ready, they pick up the stick and talk about the last month and how they’ve been feeling, not what they’ve been doing. Whoever has the stick is the only one who talks, everyone else listens, we don’t try to fix. As men we like to fix things, by not fixing other guys allows us really listen to what’s being said, often just being heard is all you need.
    • For me, I get as much out of getting stuff off my chest as it is listening to other guys, often I find things I’m worried/frustrated about or feeling incapable/inadequate that there’s others in the same boat, it makes me feel less alone.
  • Meditate – a sit, contemplative prayer, mindfulness session… call it what you will, we sit in silence for 10-15 minutes and clear our mind
    • For me, this is one of my favourite parts, I have no other time in the month that I just sit and let my thoughts run away. I used the breathing techniques I learnt here early on in Violets treatment, taking deep breaths, breathing negative thoughts/anxieties out and breathing clear thoughts in.
  • Discussion – Usually we have a topic, a bible verse or something to bounce around, talk though how we deal with certain situations, sometimes the conversation gets deep, other times, not as much.
    • For me, this part is good to have an open, deep conversation with other guys, understand where other guys stand on topics and why
  • Close – prayer, cuppa and quick chat before heading home to bed.
    • For me the “chat” that happens here is much more loving and direct than the when the night starts. We let out mates know if we think they need further help, we hug to show we care, we setup catch-up meetings before the next month to check-in on how we’re going.

To be honest, the group can a bit awkward (silence is a hard thing to master), there’s sometimes I feel uncomfortable and challenged (sharing how I actually feel). But the overall I enjoy it, I come home feeling refreshed, supported, loved and not alone.
As a society I think men have lost their way a little, every other minority has been supported that men have become a minority too, but I’m starting to see a shift, with things like movember  to bring awareness to mens health, Mens Shed to get blokes together and the rites of rites of passage  to help our boys become men. For me I think I’ve found out a bit more about be being a man at these groups I attend, and for that, I’m truly grateful.

So men – who is in your support group? Who would you turn to in a time of crisis? Do you have a safe place to share how you really feel? If you ask around there’s probably a group like this near you, if not, why not start your own stop having shallow conversations and start having real ones.

Marriage [HDYDI – Part 2]

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.

God [HDYDI – Part 1]

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.

CarriedAA

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.

I also know God has been with us throughout this. Chis Tomlins song “Whom shall I fear” has a great line “the God of angel armies is always by my side”. This is actually based on 2 Kings 6:16-17 (NIV)

“Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.” And Elisha prayed, “Open his eyes, Lord, so that he may see.” Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha

…his own army of angels.

Praising God with a great song is something we enjoy, clearing or mind of all the worries and giving all the glory to God. Many trips in the car by ourselves had allowed us to turn up the volume and sing to our Lord. Favourites through this time include King of my heart, No longer slaves, O Lord & 10,000 reasons (see/listen to the full list on YouTube)

We trust the medical professionals, we’re blessed.. But through Christ we see things in a different light…

When the oncologist says… if she makes it to that <<positive>> point
Through Christ we hear … when she makes it to that point

When the oncologist says… if that <<negative>> thing happens
We pray… that <<negative>> thing won’t happen, in Jesus name!

Which brings me to the next point, Prayer. God’s yolk is easy. Putting those worries and concerns for him to deal with is easy. We’ve had a small army of people praying for Violet as well, there are many days that their faith, strength and commitment to prayer is bigger than ours. Thank you!

Initially when people would say they are “sending positive vibes” to me it felt like fingernails on a chalkboard. Thinking about this further I now translate it to “I don’t know God yet, but if I did, I’d be praying for you”

There are many Bible verses that have inspired us over time, reading and meditating on these verses over the last 18 months has definitely helped.