Lina and Elliot outside Ronald McDonald House
Lina and Elliot outside Ronald McDonald House

ParentsOctober 30, 2017

A home when our family needed one: In defence of Ronald McDonald House

Lina and Elliot outside Ronald McDonald House
Lina and Elliot outside Ronald McDonald House

When Counties Manukau Health dropped plans for a Ronald McDonald House for families of Middlemore Hospital patients, many parents of very sick children were shocked. Caroline Beech explains why Ron’s House means so much to those who use it.

The scan found our daughter’s tumour on a Tuesday. A week later we were on a plane to Christchurch. In that unfamiliar city, a surgeon would drill a hole in Elliot’s head, about the size of a 20 cent piece, and take a tiny piece of her brain.

Our world had been upended.

Elliot in hospital

We’d need two trips to Christchurch, in the end. The first was for Elliot’s brain biopsy, and to meet the team who would be managing her treatment; the second was to kick off her chemotherapy. During both trips we stayed at what we affectionately called “Ron’s House”.

In case you’ve never been to one – and I kind of hope you haven’t – Ronald McDonald Houses are basically motels for the families of sick children. The one in Christchurch is just a stone’s throw from the hospital (convenient, when you could be trekking between the two places several times a day) – and has indoor and outdoor playgrounds, a comfortable lounge, and a communal kitchen and dining room.

At a time when we were going through so much uncertainty, everything was just there. We didn’t need to think about where we were going to be staying, or where the next meal was coming from, or anything other than supporting each other. Ronald McDonald House was genuinely invaluable, to the point where it’s hard to imagine how we could have coped without them.

Ronald McDonald House at Starship

We had to go to Christchurch because there’s no pediatric oncology service in Wellington. There are only two in the whole country (the other one being Starship Hospital) – so if you live anywhere other than Christchurch or Auckland, and your child has cancer, you’re going to need to get familiar with Ron’s House. The same goes for any number of other conditions that can’t be treated at regional hospitals – and for some families, treatment means having to stay there indefinitely.

I’ve described it as being like a motel, but Ron’s House is more than that. At a motel, you can’t take for granted the heightened awareness of hygiene that’s required when many of your guests are immune compromised. You won’t have meals cooked for you most nights by local businesses and community groups. Motels don’t provide workshops and activities for patients and their siblings, and don’t have shelves stocked with donated food. And a motel probably wouldn’t be so forgiving about unexpected arrivals and departures, and guests who don’t know how long they’ll be staying, or who might not know they’re leaving until the day it happens. It also wouldn’t have the sense of community you can only get from other people who fundamentally understand the things you’re going through, because they’re going through them too.

Elliot with her father Jarrod at Christchurch Hospital

The day we arrived, it turned out that they weren’t expecting us – they hadn’t received our booking, for some reason. They shuffled things around and made it work anyway. They were having their mid-winter Christmas that night, including a full Christmas dinner and a visit from Santa, complete with presents for all the children. Despite the fact that we’d literally turned up on their doorstep 45 minutes beforehand – and they didn’t even know we were coming – Santa produced named gifts for Elliot and for Lydia, our older daughter, from his sack. Elliot was too young to appreciate it, but for Lydia it was huge. At that stage she was almost four, and the whole situation was as hard on her as on any of us. The people at Ronald McDonald House went the extra mile to make sure she was included.

Caroline and Elliot outside Ronald McDonald House

Yes, they’re sponsored by McDonald’s (along with, as it happens a whole host of other businesses and individuals) – and you’d be naive to think that the corporate sponsors of any charity are providing that sponsorship purely out of the goodness of their hearts. But aside from the name, the connection is fairly low-key – it’s not as if they’re serving Big Macs and Happy Meals there. To someone (like myself) unfamiliar with the eponymous clown, the relationship is almost obscure. And maybe in an ideal world corporate sponsorship wouldn’t be needed for this sort of service… but as the mother of a child with a brain tumour, I feel uniquely qualified to tell you that this isn’t an ideal world.

We’re lucky that for now Elliot’s able to be treated as an outpatient in Wellington – but if she eventually requires more intensive treatment, we’ll be off to Christchurch again – where we know that the team at Ron’s House will welcome us with open arms. It won’t be home, exactly – but it’ll mean we can all be together – and no matter what happens next, that’s the most important thing of all.

Follow the Spinoff Parents on Facebook and Twitter.


This content is entirely funded by Flick, New Zealand’s fairest power deal. In the past year, their customers saved $320 on average, which pays for a cheeky bottle of wine in the trolley almost every shop. Please support us by switching to them right now!

Keep going!
Love

ParentsOctober 27, 2017

Writing the world you wish you lived in: Why I write children’s books

Love

Co-author of the children’s book Promised Land, Chaz Harris is ‘resisting with love’ by creating fairytales for all children. He shares a personal essay about why he writes the world he wishes we lived in.

If you’re anything like me, the past year or so has felt like living in a terrible alternate timeline. It feels as though Biff from Back to the Future found the sports almanac and nobody stopped him…then he became President of the free world. Where are you Doc Brown? Marty? Anyone?

I don’t remember who I was this time last year, all I do know is I really miss that person. I used to wake up and achieve so much more with my days. Now I wake up bracing for what might go wrong in the world by the time each one is over. My sources of sanity have become Whoopi Goldberg and Joy Behar on The View, Trevor Noah on The Daily Show and the occasional dose of Samantha Bee. Some friends started calling me ‘woke’, but I just call it paying attention.

What I certainly didn’t have a year ago is this ever-present feeling the world might be about to end, that nothing really matters anymore. I tell myself I’m just being dramatic and try to shake it off, but the feeling still lingers and keeps whispering like Pennywise over my shoulder. Am I alone in this?

When the world is telling you that you aren’t equal and you don’t belong here on almost a daily basis, you start to absorb that message – you start to believe it. Even in a country where LGBTQ people are mostly treated equally under the law, a barrage of news to the contrary still chips away at a person’s soul. I say mostly equal, because even in New Zealand my friends in the LGBTQ community still face inequality and have to fundraise for vital and lifesaving healthcare. The battle is definitely still ongoing.

However, if it isn’t America electing a President and a Vice President who believes I should be hung or ‘shocked’ into being straight, it’s the violent public debate in Australia over marriage equality after MPs failed to do their jobs. If it’s not Chechnya exterminating gay men and the world taking too long to react, it’s Egypt or Indonesia committing similar atrocities.

If it’s not the overwhelming number of trans women, especially trans women of colour, being murdered in America so far this year, it’s transgender people being told they cannot protect and serve their country simply for being who they are. If it’s not extremists and evangelists blaming earthquakes and hurricanes on us, it’s the UK election leading to a deal with the homophobic DUP party to remain in power. If it’s not Nazis marching in the streets of America, it’s them being called ‘very fine people’ by the leader of the free world.

THERE ARE NAZIS MARCHING IN THE STREETS YOU GUYS! Indiana Jones punched Nazis. #ImWithIndy

I. Am. Exhausted.

I’m a white gay man, considered the most privileged in the LGBTQ community. However, that doesn’t make my pain and anxiety about all of this any less real. If this is how I’ve felt though, it makes me want to hug everyone else if they’ve been feeling it (or worse). You don’t have to be LGBTQ to feel it either, plenty of others are having their rights attacked or stripped away.

I think all most of us want is to live our lives in peace, have a stable job, a roof over our heads and (if we so choose) someone to love and be loved in return – in any case, to live happily ever after, whatever that might mean for each of us.

For almost everyone right now, that’s not possible when insults are being thrown around on Twitter by a man-child and self-confessed sexual predator raising tensions about nuclear war. To live happily ever after, the world must still be here to live in it. I’m hoping a lot if it is just bluster from both sides and it doesn’t lead to anything catastrophic, but that does feel strangely like wishful thinking.

Just over a week ago, it all looked very bleak as I sat in front of the TV at 7pm and Winston Peters revealed Jacinda Ardern was going to be Prime Minister of New Zealand. At precisely 7.01pm my face started leaking. Like, a LOT.

I soon realised I was crying happy tears.

I was crying them for the first time in over a year.

On 8 November 2016, the day of the US election, I remember feeling like hope died. However, in that moment, just over a week ago, I felt a sudden rush of hope rise again. This wasn’t so much about hope for New Zealand, it was the message I knew it would send around the world.

After a few weeks of terrible news and painful experiences for women, and arguably a year full of them, I was crying because New Zealand once again became the country I’ve believed it to be. A place where women were first to get the vote, that isn’t afraid to stand up to bullies and say “No to Nuclear”, a place that’s in many cases of social progress ahead of the rest of the world.

Although America may not have been able to put a woman in power, New Zealand has in the past and now we’ve done it again. For the young women and girls who see inexperienced men being given more power or getting rewarded over a smarter, more qualified woman, this was surely encouraging. Almost a year to the day from a sheet of toughened glass extending over America, New Zealand got to remind everyone that the same ceiling (at least in regard to leading the country) is long gone.

We became the change I desperately wanted to see in the world.

I’ve also seen a lot of reasons for hope coming from our young people, particularly the lines at universities around the country as they waited to vote. Studies have repeatedly shown younger generations are increasingly open-minded, that they’re willing to embrace their own identities and appreciate each other’s differences. LGBTQ young people are in a much better world than I grew up in, with more support networks, role models and media representation than I had.

The characters from the author’s books Promised Land and Maiden Voyage

Perhaps that’s why I’ve found some comfort and escape in writing fairytales, because in hopeless times we need hopeful messages more than ever. Or maybe it’s just because my love life swings wildly between the attention of a white crayon and the messy scribbles of a child on a piece of paper? It’s all about hope either way though, right? That question was rhetorical. I’ll marry wine. Can we make that legal?

But seriously. Particularly if you’re an artist and are part of a minority right now, writing becomes a form of protest. To write about a better place, a world where we do belong, that’s a way we can fight back in positive ways that might be able to move the needle a little. To ‘resist with love’, so to speak.

I often tell myself it will take more than a few children’s books to change the world, but also that it’s worth a try. It’s not nothing. To quote one of my favourite lines from Wonder Woman: “If you see something wrong happening in the world, you can either do something or do nothing – and I’ve already tried nothing.”

So we do what we can with what we have. We might not be able to make older hearts and minds grow or learn to accept us, but we can show those growing up now and in the future that love is love, and that everyone deserves to live happily ever after.

I want to live in a world where boys and young men are taught that feelings are nothing to be ashamed of, that they should treat women as equals and always respect consent.

I want to live in a world that remembers what empathy was, for us all to become less selfish and think about how we can help the person to the left or right of us, instead of just ourselves.

I want to live in a world where black lives matter, because they do.

We need to be kinder to one another.

We need to do what we can in our own lives to try and move the needle – to create a better and more accepting world for everyone.

We need to resist with love.

Along with Adam Reynolds, Chaz Harris is the Wellington-based co-author of acclaimed LGBTQ themed fairytale Promised Land and its follow-up, Maiden Voyage, which is currently fundraising on Kickstarter.

Follow the Spinoff Parents on Facebook and Twitter.


This content is entirely funded by Flick, New Zealand’s fairest power deal. In the past year, their customers saved $320 on average, which pays for a cheeky bottle of wine in the trolley almost every shop. Please support us by switching to them right now!