Rainer's Blog

We were married

The first half of 2014 was such a terrible time. Em suffered so much in the last part of her pregnancy with Anouk. She lived with intense pain, day after day, night after night, with no treatment and no let up. The only part of it that made it in any way bearable was that we understood it to be temporary - everyone said the pain would ease after the birth. Then on 6 February 2014 Anouk was born, and we had a moment of magic and beauty: the miracle of a new life in our World.  But Em's pain didn't resolve, it intensified. The hospital put her on higher and higher doses of pain medication and it seemingly didn't have any effect. Within days she had been diagnosed with a terminal cancer, and our lives were ruptured in so many ways. The following months held many new forms of suffering that we couldn't have imagined if we hadn't had to live through them. We reeled with the shock of the diagnosis - and how were we to parent through this time? Em's body was so weakened by carrying a baby to full term while her undiagnosed cancer metastasised, but now she had to launch into a course of strong chemotherapy. She spent long periods in hospital and at home in bed, barely able to speak. Other times she struggled to walk and I pushed her around in a wheel chair, which could be painful to sit in. There were trips to the emergency ward in the middle of the night, and so many other unexpected struggles. As the chemotherapy progressed she became increasingly neutropenic, and by the end of it she had to spend ten days in an isolation room in hospital, severely neutropenic and suffering from pneumonia. 

After all that it turned out that the chemotherapy had been partially successful. Her tumours had reduced in size by around twenty percent. After some weeks of recovery she was feeling a lot better and we decided to go with Christian and Anica for a holiday to Greg and Kathy's house at Portsea. On the morning of 16 August 2014 Christian and Anica took care of Nelleke and Anouk and Em and I set off for a walk to Point Nepean. What had seemed impossible just weeks before was happening - we were walking together in the bush! It had felt like Em's life had been stolen away and now we had managed to reclaim it. She was energetic and completely herself. I was so happy. When I was a child my grandparents had a house at Sorrento and we spent holidays there. Point Nepean is now a national park but back when I was a child it was a restricted military area and completely inaccessible. You could get glimpses of a mysterious coastline from the Sorrento-Queenscliff ferry, but that was about it. Now, all these years later and for the first time, I was walking through this forbidden area, with Emmaline. The day was filled with possibility.

Point Nepean 16 August 2014

Point Nepean 16 August 2014

We talked and talked and of course we talked about what to do over the next weeks. We knew that this was only a window, that soon Em would be back in treatment, that the cancer was incurable and growing. Was there anything she had always wanted to do? Did she want to go somewhere? She said she wanted to leave rings for Nelleke and Anouk, I asked her to marry me, and she said yes. In fact, she said, getting married was what she wanted to do, more than anything else! Not just for me, but also for our girls. She had only a short time to live but she wanted to spend it consolidating and celebrating our love and the family we had created. Really, I've never been so grateful as in that moment. As we walked we started planning our wedding.

Before she died Em had started drafting the first of two blog entries about getting married. She never quite managed to post it, though she certainly intended to. And the second post was never begun. Today is our first wedding anniversary, and I don't know whether to be happy or sad - I'm in a state of foggy inertia. I think it's a good day to post Em's unfinished words:

Our Wedding (Part 1)

We got married and it was an overwhelming event of the kind that remakes your whole world.

I feel awkward writing about it because it was entirely impossible to invite all the people we wanted to. People we knew from the Pilbara were particularly unrepresented. We couldn't invite many of our relatives, even though the decisions unsettled my world a little. We didn't invite many people from uni. The wedding didn't match my childhood expectations for a wedding, most of all because I didn't know then about the realities of large events at short notice in difficult circumstances. So it wasn't the summary of a lifetime, it was a special moment in time, in a very immediate community. Not the whole story by any means.

We planned the day in a few weeks, everybody involved did us favours that they're probably promising themselves that they will never repeat. But the best compliments that I received were: (1) That the wedding was beautiful because it was about love of family and community, not only romance (although there was plenty of that too); and (2) people were doing things that they were good at, and that were meaningful to them. These were the greatest compliments, from my point of view, because they're my values. I really hope they both shone through. If you invite me to a big event, I'd prefer to be meeting the people in the kitchen and creating something together, than to be sitting up formally and being waited upon. So I tried to rope everyone else into that experience. I wanted the people to meet, to create, to have a little love and friendship. Sorry to anyone who got a little over-impinged upon. It really came together and I am really grateful. 

I can't reconstruct the event here, so all I'll do is give a little backstory and the "thank yous" that were meant to be in my speech. I have to be restrained with the photos, because, you know, the internet... 

It began when Rainer was asking me about priorities and mortality and such like, as we walked in the Point Nepean National Park on our first reasonably long break for about a year. I talked about wishing for rings that I could leave the girls, thinking that they would be the most tactile, embracing things, doing the work that words and photos cannot. And immediately Rainer and I wanted rings that spoke to each other, that embraced the girls and and ourselves and shore up the idea of our little family, no matter what the real narrative turns out to be. He asked me to marry him. We walked on the beach later that day. Our elder daughter gathered shells, and Rainer tucked some away. Back home, I found a ring design that I liked online, and Rainer got in touch with the jeweller, secretly taking his little bag of shells with him. But because our romance is all about connection, he invited me into the conversation, and then we found that our jeweller was not only brilliant, but open, flexible and generous with design ideas. So personable. She is Katherine Bowman, and I recommend getting in touch with her for any jewellery or sculpture type project you might have!

We decided to get precisely the rings we wanted, imprinted with the shells our daughter had collected, using the best process we could find, and Katherine's work is as beautiful, ethical and durable as things get in the world of jewellery. We're obviously on a very tight budget these days, but we decided to spend money. I'm nervous writing it, because there is love and money and hope and symbolism coiled in these tiny rings that could be lost, but it makes us feel the beauty and the vulnerability of our everyday connection. Straight after the wedding, I had three weeks of radiotherapy and I held my rings tight through every treatment. They are such immense comfort, such a reminder of being well intentioned. 

We asked Katherine for ideas for ways of extending our wedding ceremony to include our girls and my hardworking, generous brother, and she designed jewellery for each of them. From there our focus only widened, to focus on connections - particularly with our close families - rather than on romance to the exclusion of all else. 

And while our intentions were utterly whole hearted, the reality from here on in is that we asked family and friends for all sorts of things that we (I in particular) would never ordinarily ask for, and they met our requests, gallantly, unflaggingly, graciously, despite, I am sure, having a few misgivings.

My aunt and uncle hosted the event at their house in Portsea; my aunt planned and sorted like the queen of events and logistics that she is. My heroic brother underpinned everything, working for weeks before and afterwards, holding things together and gathering the people in. Tessa designed the exquisite invitations, using one of Rainer's drawings. Everyone brought what they could bring. Close family gave extra funds - more, I think, that they would have imagined was reasonable prior to the event - and so we were able to buy the food, flowers and clothes that we liked; we could hire additional furniture to try to keep people comfortable. My mother sewed and ironed, patient as ever. The flowers were by Rachel Laura and you should definitely hire her for something soon. Cath filled a borrowed Subaru to its ceiling with botanical wonders and drove into the night. Everyone did unpaid overtime. The food was partially made by the wedding guests (!) but was also ordered from SugardoughBundarra and Stringers, amongst other places, and then transported and served by wedding guests. The people, they worked. There were toys from the Collingwood Toy Library and craft activities from the creative folk who I asked at the last minute. People who donated special wool: the unused portion went to ArtPlay. My brother, and then my uncle drove a giant trailer of chiffon and glass interstate. My cousins gathered and polished and packed all the contents. Another uncle bought spectacular cheeses and copious wines - more than I'd realised anyone would need. People travelled long distances with young children. Really quite long distances, with really quite a lot of young children. 

The celebrant holding the ceremony together was my aunt, Gemma Schooneveldt. She was sensitive and flexible through the planning stages, solid as a rock through the ceremony itself. Her son played gorgeous music, virtually impromptu. 

Rainer and I sang, he did it by choice and even wrote his own song. I sang because I thought I owed it to Rainer, but I dragged in my unsuspecting but highly harmonious cousins, for a quick cover of Simple, by kd lang and David Piltch. We held tight to each other and survived. Katrina sang more songs, with her brother accompanying, because they are so generous. We hired an accordionist and she was amazing.

My father gave a speech, as did Freya and Rainer's uncle John. Tiriel was the MC.

And then there come the documenters, the people who give up the immediate experience of the day for unflagging immersion in the making of images. Tobias Titz took the bulk of the photos. Caro Macdonald interviewed and filmed Rainer and I for an oral history project that laid the emotional groundwork for our wedding, and then filmed the wedding itself. The generosity and spark of these two brilliant people is awe inspiring, quite honestly. And love to K+t for supporting them. And huge thanks to the backup photographers, the dedicated amateurs framing with love. Especially Gabe. 

Being one year to the day since our wedding makes the pain of Emmaline's absence that much more pointed. But I'm so, so glad that we did get married.