The link to this lil beauty came through to my inbox this morning and I could not be more excited. Some new names and some old friends creating incredible work under Mary Ellen's tutelage. Warning- you may get incredibly inspired by this.
Home TPN has started for Jaylen this month which means a lot less time in hospital but a lot more care for Katie. She has set up his room as a mini medical station with everything he needs for his nightly connection. I was really worried about what this would mean for her- it's another huge step away from a normal life. But as usual she is coping- her biggest worry on this day was that her house is now overtaken by toys in the living room in an effort to keep Jaylen's bedroom sterile. She will be 23 this week, I cannot believe how much has and also hasn't changed since I met her 3ish years ago.
One of the beautiful stories put together for the MAP group project " Beyond Borders" If you are around Sunday the 22nd of June at 12pm the whole series featuring works that show an alternative view of Refugees and Asylum seekers from that we are being force fed by the mainstream media.
In one of the better spontaneous moves I've made I went to Sydney with my friend Mel who is also an insanely talented photographer to pull down my show and do a gallery megamix in 6 hours. We managed to see the Portrait prize, shows by Ben Lowry, Chris Rainer, Erika Diettes, Mary Ellen Mark, James Horan, a group show by relatives of TJ Hickey and the Mobile phone prize. Yep, all in one day. Head on was like no other photography festival I have seen, whole sections of Sydney seemed to have been overtaken by shows which was amazing in itself but what really threw us was the quality. Everything was saw was great, excellent and in some cases brilliant. My must sees are James Horan's brilliant series on Irish Gypsies and their horses at Dank Gallery space. It's funny, kind and one of those series I cannot wait to see as a book one day. And of course Mary Ellen Mark's first Australian show at Still's gallery which reminds everyone that masterful photography is needed in the time of image inundation. It's a small selection of her work but that does not make it any less powerful.
If you can make it to Headon, try and get longer than 6 hours to explore. You will not be dissapointed.
It's dawned on me recently that I spend a disproportionate amount of time in hospitals for someone who has not actually needed to see a doctor for so long my medicare card expired without me knowing. Although I love who I photograph, love what the whole process means it has made me wonder if I am turning into a one trick pony. When Mary Ellen sent me to photograph the Diaz girls in Oaxaca this year I had a crisis of confidence that maybe I am only good at photographing people going through remarkable circumstances rather than being a good photographer. Then I came home and kind of forgot about it continuing work with Katie, John and the Ronald McDonald house.
Not to say there is anything wrong with specialising- I know my strength is that I am genuinely interested in the people I photograph more than it being about my photography. When someone lets you into their incredible life documenting it isn't that difficult and I know my photos are more about the people in them than me trying to be a show off great photographer.
BUT- two weeks till we go on our first real holiday in years and I am itching to take photos. I want to try something different but do not have time to make connections with new people and am already working on a very interesting project with MAP group that has to be done before I leave. A very sweet young photographer contacted me the other day and we were talking about the smash and grab nature of so much photojournalism. That you have to be aggressive to get those sort of shots if you are not the sort of person to immerse yourself. I always think the strongest photos come from photographing when you are close too, what you see every day. Which is why last night I got in my car and took some awful shots of the suburb I live in- wrong lens on, panic rising when I realised my new camera wasn't insured yet, getting beeped at when I tried to stop my car. And those these photos are really shit it was so nice to look at the familiar through a photographers eyes. Cannot wait to do it again over the weekend.
Since the show went up I've had a lot of kind feedback about the photos but also a lot of questions about Katie and Jaylen. I take it as a good sign that people are invested in what happens to him, it means my work is doing what I want it to.
What Jaylen has isn't really a disease- it was a birth deformity. I've seen photos of him minutes after his birth and he is the most perfect, tiny baby who happens to have his bowel and intestines outside of his body. The solution seems simple- just put the organs back in and all should be fine. But it's a lot more complicated with Jaylen. Despite all those surgeries ( 19 and he is only a bit over 3 years old) making his stomach "pump" and his bowel's work has not yet fully succeeded. When you can't digest your food it has to come out and when it can't make it to your bowel it will instead expel as vomit. As any parent knows when a child vomits they can loose weight quickly but for Jaylen the problem is heightened as he can't take in nutrients when he is so sick. So every night he is connected to TPN, a nutritional compound the runs into his veins bypassing his stomach. At the moment, without TPN Jaylen's body would basically starve to death no matter what he ate.
People have asked if he is home, he is home during the day but spends every single night in hospital connected to the machine. To allow Katie to administer the TPN at home would mean a lot less hospital but it is very costly and something she is hesitant about as it involves her administering full medical care and taking all that responsibility.
TPN, as much of a miracle as it sounds, has complications. If used long term it will damage Jaylen's liver, if used indefinitely it will kill him.
Jaylen's medical team are brilliant and are trying every option but unfortunately that is what it is- trying. They have no solutions because they have never had a child like Jaylen.
That is why Katie is stuck in such limbo, why it is so hard for her to put her baby to sleep every night in a hospital bed- she has no answers and all the unknowns weigh deeply on her. She is 22 years old, strong as hell and scared shitless about her son's future.
I'm meant to be studying but instead I am scanning films and looking at folders of images I haven't been able to give enough attention to this year.
I'm lucky to have been asked to do another stint at RMH Monash when I come back from overseas in July. I'll be working with my stupidly talented friend Teagan who will be producing a video piece. And I could not be more excited to get back and share
The show is up and ready to be seen by anyone in Sydney. I had to edit the images down heavily to make them fit in the space which has only made me more determined to show them in Melbourne and celebrate what a special woman Katie is with everyone I can.
Ok sorry for the show overload but I am a bit worried the opening will be a party of two as I don't know that many people in Sydney. A show was never the end goal for Katie's story but I am hoping to use it as part of a wider launch of her story which will hopefully see it making it into some mainstream media where she can be celebrated for the extraordinary person she is.
Dodho contacted me a few weeks ago when shit had hit the fan in my life. Aside from everything else work has been insane. I like getting paid and all but I'll never understand why it is all clients need you desperately at once. I tell myself it's the payoff for having three weeks at Ron Mac House but never know why everything has to happen at once.
Anyways- I clicked on the link and could not believe what a beautifully designed site it was and just how great the work featured is.
As I get closer to headon time, getting prints and media releases ready, being able to share more of Katie's story is becoming more invaluable as is the oppurtinity to let Katie know it's not just me that cares about her story
In the two years I have known Katie I have never seen her cry. In fact it became a bit of a joke between us that I would have to take her a soppy DVD to get the tears flowing. She said to me on a few occasions that if she started she would be scared she wouldn't stop. She's had a motherfucker of a 2014 so far, anything that could go wrong has and the reality of things is weighing very hard on her. I've been trying to tell her it will get better, that this is just her time to wade through it and she will resurface happy again. She told me she doesn't know if she can take much more pain and honestly I wonder if she can too.
During most of my time in the house I barely spoke to Bek as she was constantly in the hospital with her twin daughters feeding and caring for them while they were starting to get ready to go home. But I felt like I knew Bek because all of the other families in the house told me how much they had relied on her wisdom and kindness throughout their stay at the house. Bek is one of those women with a permanent smile on her face, she is warm, kind and a born nurturer. On my last day at the house I met her husband Dave who was equally warm and he told me about the events that lead to Scarlett and Isabella being born at 24 weeks.
All of the stories I have shot for this series will be displayed along with the photos at an exhibition later this year. I cannot wait to share the stories of these people who so graciously let me into their lives.
When I first met up with the wonderful Cherie from RMH Monash I warned her I was a crier and there was every possibility I'd be a soggy mess talking to families. But I managed not to cry once at the house which for people that know me personally is an achievement.
In the second week she told me about Nathan and his family. She said Nathan had a horrible run of misdiagnosis and his family had spent months in the house before he was finally well enough to go home. She described his parents as lovely and said that Erin's mum, Debbie, was fantastic.
On the first day I introduced myself but felt like I sort of bombarded them with my fumbling spiel about what I was doing in the house. That night I felt like I had missed the mark and had been pushy and rude something I avoid. The next day I sat in the kitchen and Debbie sat down with a coffee. We started talking and before I knew I looked at the clock and two hours had passed. She is a fascinating, kind and wonderful woman who had arrived in Australia shortly after Nathan's early arrival of 24 weeks and now almost a year later was going home to Texas at the end of that week. Her daughter Erin came and sat with us and I felt slightly trepadatious after my chat the day before. But then Erin started talking. She told me the full story of Nathan- a baby she and her husband had so desperately wanted, born so early, expected not to make it, time spent in NICU, ICU and the wards. Misdiagnosis, stress and pain. She opened up so completely to me that I think she even surprised herself, with tears rolling down her cheeks recounting what she had been through. Her sharing that story was incredible as was the next day when I met Nathan, a bubbly, chubby baby who was so different from the images I had seen on her iPhone of the months he was in hospital.
Each of the families I photographed have filled out an interview about their children and their time in the house. It was the best way we could think of having people share their own stories beside the photos when eventually exhibit the work. Erin and Lance's is so eloquent when I read it a week later, in the privacy of my study, tears ran down my cheeks too.
Maddi and Sam are twins that stayed in the house for 2 days while she had treatment that was no longer available in her local hospital in Tasmania. Her parents arrived tired after their first flight with the kids but were still open to talking about the journey that brought them to needing to us the house in the first place. Maddi has Cerebal Palsy and needed a procedure that helps her to walk and the Monash was the best place for it. The photos of her running through the house were taken a day before the procedure- she sized me up in the kitchen and then spent some time exploring the house and while I followed her. One thing her mother Amanda said to me that really stuck was not about Maddi but Sam. With prep looming she was trying to decide if she would send them to the same school as Sam has no special needs and she was concerned about him having to look after her. This little 4 year old told him mother that his sister is his best friend and of course he wanted her with him through school. After talking at length with parents who were worried about how children who are different will cope in a society that doesn't really know what to do with them, Sam's words brought a lot of comfort.