The truth of my birthing Celso – my first near-death experience – and my developing an aggressive form of breast cancer within my son’s first year of life is that my body was not well suited to making babies. I wish it were different, but it’s not. The combination of a likely genetic tweak behind my son’s ‘abilities’ and my kind of cancer meant bearing children was dangerous for me.
In Australia, I cannot adopt a child because I’ve had breast cancer and now likely because of my age – 42. Of course, birth mothers get cancer but government human services have decreed that placing a child with an adoptive mother who might die prematurely is too great a risk of another grief. Clearly, the wisdom of this doesn’t follow national statistics on survival rates or look to the father’s ability to be an excellent parent – solo or not. All that aside, my mother’s experience of adoption made me pause. Would I be doing the child a favour? Is it really about them or about me wanting a ‘normal’ child? Is it because I want a playmate for Celso to develop his social skills, and not about openheartedly loving another child? Truthfully, I’d hope for all of these: the joy of witnessing a daughter or son develop normally, and the benefits this could reap for Celso.
This year, ten years after my mother’s death, I received a strange phone call.
Is this Josepha Ruth Dietrich?
Yes, I said, getting ready to end the sales conversation.
This may seem strange, but we’ve done an audit on all our superannuation accounts and we didn’t pay all of your late mother’s estate.
I looked up at the ceiling with its bare light-bulb and thanked my mother – again. I was two weeks out from finishing a contract as a research assistant with the psychiatry department of the University of Queensland’s Faculty of Medicine. The quality improvement project I was working on trained psychiatric nurses in motivational interviewing to improve the discharge planning process for people coming out of inpatient psychiatric units. I’d first returned as a casual then taken this part-time position when Celso was five years old. Now, just as it wrapped up, came a much-needed windfall from my mum.
In 2017, at nine years old, all of Celso’s front teeth are loose. He has one cartoon gap – an empty square against his other teeth – when he smiles. The tooth fairy hasn’t visited his pillow with money as yet. This is so Celso:
Stalled
stalled
then …
change.
He’s taught me so much about not hanging onto expectations.
He attends a mainstream school with an integration aide in the classroom with him, helping to interpret class work and engage with his peers and wonderful teachers. Our local school community opened their arms to Celso. Certain children gravitate towards him in the playground, making him their special friend; these are usually those with some emotional experience too hard for their young selves to understand yet, like arriving in Australia without English and having to acquire the language quickly, or those classed as different in some way, who find Celso’s non-judgemental acceptance of them a relief.
I’ve organised outside professionals – an occupational therapist with years of experience with atypical children, and a music therapist who’s focussing on his speech – to attend the school for therapy sessions each week. The primary school’s enrichment education co-ordinator has put together a team of the best aides, young and vibrant, the school speech therapist and the pick of the teachers who get my son. Until year three he only attended four days a week. In agreement with the school, Celso required time away and Fridays were Son-Rise Program days, where play therapists worked on social engagement, eye contact and vocalising. Even now Celso finishes school at 2 p.m., finding his energy permits this and not more.
Post–cancer treatments, I signed up to ride more than 200 kilometres over two days to raise money for breast cancer research by the QIMR Berghofer Medical Research Institute. Over five years my Breast Friends for a Cure team raised just over $120,000 and cycled hundreds of kilometres in training and during event weekends. This led to my meeting the CEO of QIMR and some of their fabulous scientists. Through these connections I got a position going out into the community and into businesses to speak about the Ride events. The job was part sales, part inspirational talker, part fundraiser. CauseForce, who ran the events, raised millions for cancer research.
The sales component of the job fitted like a man’s suit and, after my second trip to the Autism Treatment Center of America to train in the Son-Rise process that helped my son, I walked into the office, and sat down. By day’s end I’d resigned. For a year I’d put my hat in the ring of doing something to raise large sums of money for cancer research. Stepping out under the ropes, I found a position that so much better reflected my psychology background and more of my values in the research assistant position that was just coming to an end when Mum’s extra super turned up.
Another surprise outcome of my participating in the Ride events was getting selected, alongside another of my Breast Friends for a Cure teammates, to be featured in a coffee table book: Under the Red Dress. Beth Whaanga and her friend, photographer Nadia Masot, created this project after Beth posted photographs of herself on Facebook after mastectomy and reconstruction. A hundred ‘friends’ de-friended her and this led to a campaign, in photographer Nadia’s words: to build awareness around cancer and cancer-related stigma, particularly regarding the grievous bodily scarring that results from surgery and treatment. To destigmatise issues around disease taboos in
