Family, friends, doctors, nurses, reporters and complete strangers have kept asking me to return to writing. Mothers of kids with terminal illnesses have asked me to go back to writing because my words have validated something in them. But one of Bede’s doctors brushed all that aside and said to me “Why did you write? You wrote to give him a voice. Start writing again.”
To be honest I have been buckling under that privilege and like for many people 2016 has at times been a hard one. Not least was within days of Bede’s story airing on The Project we were told we would lose Bede any day. That Bede was in what is known as the honey moon period, even his wellness was bittersweet. That there was no medical explanation of why he was doing so well given his tumour had now grown so large. We were to prepare ourselves.
So we did. I withdrew from uni a week before my final exams. Roy once again put work on hold. We stopped pushing him as hard in therapy. We spoke to Gus. We worked with palliative care. We braced. True to form Bede lived, he shone, he grew.
But we were now in a new place having received so much attention and support and everyone having a different idea or expectation of how we should be feeling or responding to that attention, how we should be living, what we should be doing and all the while the doctors were certain that we would lose Bede imminently, it was time to plan his funeral.
So for the first time my anxiety took over. In the absence of adrenalin, dealing with the blunt force trauma of the news we were losing Bede, that his tumour was now the biggest it had ever been, combined with the chronicity of cares and doing my best to be a fun Mum for our other two kids I have been paralysed. With every ounce of strength I have had I have worked to maximise Bede’s quality of life, hold down the fort at home and hold on to our marriage. I haven’t been returning your calls, responding to your messages, answering your emails because it’s taken everything we have had to just survive. It’s been a brutal 6 months.
But shutting down doesn’t allow for much light to creep in.
I’ve had this concept percolating in my mind of the success story.
Mother’s post images and stories of their children’s lives once they have defeated cancer and they are out fishing, dancing, attending balls, going to school, achieving awards, getting drivers licences. Meanwhile renewed debates rage over quality of life versus quantity and what side effects of cancer render a life not worth living.
Somehow I don’t feel the permission to participate in any of it. Because my child will die or because I am perceived as bias. Either way we won’t have that success story.
But the truth is we are all going to die. Our success is not in some predetermined outcome or measured in months or achievements it is in the way we live our lives. Bede lives brilliantly and boldly and he is seeing in 2017 surrounded by friends and family and with a smile on his face. I keep getting caught out by these moments of OK-ness where I think I wish someone had told me this would be possible back then.
So I want to talk to the mothers who have shared my heart break – who’s children have no cure, there is just time. To the families who the ‘success stories’ don’t resonate with.
Here I am audaciously holding my terminally ill child up as hope.
Because the one promise they made us is that it was impossible that Bede would ever live until two. Now he is starting to drive his motorised car, we have a brand new wheel chair on the way, he is communicating and making choices with his switches, he has completed his kindy orientation. He has made new friends and his old friends love him even more. He is acquiring new skills and sharing the same old soothing light and when I lay on the mat with him the other day he laughed until he cried.
2016 has been hard for many of us but you can have moments of despair, moments where you lose trust in the system, or faith in yourself, where the challenges seem insurmountable, where you lose your positivity or even moments where you wish for the mercy of death and you can move beyond them.
Bede will turn 4 in a matter of days. He will start kindy in a matter of weeks. His brand new wheel chair will arrive in a matter of months. He is once again slowly being surrounded by people who are backing him for the slightly longer haul. This year I will once again try to go back to uni, roy will try and return to his career, our other kids will each reach their own milestones.
3 years after we ceased chemo for Bede’s cancer, a cancer that was meant to retaliate by taking him almost immediately we are at home, watching the sunset and bathed in the glow of gratitude.
We want to wish everyone a happy, healthy, joyful new year. There is so much more to say but for tonight this will have to do.
Bede is well.
This blog is dedicated to our family’s greatest success story. My teacher, my friend, my uncle. A man who demonstrated to us all that a boy swathed in his parents love and his own strength and zest for life could defy the odds and never be defined by disability. A joker, a family man, a special olympian. The very best of us.
Rest in Peace now Dominic, you and your memory are so very cherished.