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.
You have all been in my thoughts all year. Although I missed your posts I knew you had a lot of life to get on with. Bede still blows me away with his strength and determination, but as a mother, I can only imagine the roller coaster you have been on. You are incredible! I’m sure it has been so incredibly difficult, but you are giving Bede every opportunity to thrive and grow and most importantly, to be loved! Well done mama! May 2017 be filled with even more miracles xx
Sending love, prayers and blessings to you all. It has been a difficult year for many of us, and particularly for you all and Bede. Yet he still inspires us, and your words encourage us to reach out to our loved ones and others who also need that little bit extra. May you know peace with whatever 2017 brings. With the power of prayer and hope, who knows where this year will lead. Happy New Year!
Thank you for your update on Bede. I had wondered for quite a while what had happened as your last blog was not good news. Glad the little chap is still with you to return your love and to laugh with you. I wish him a happy 4th birthday when the day comes and hopefully a long future with you.
The update on Bede sounds really amazing that he is still living and surviving and turning 4 years old in a few days time. As the Lord hasn’t called Bede to his heavenly home.
Sent from my iPad
Regards Rebecca Law-Davis 😊
“Survival” takes us to places few understand. But it is necessary. I too missed Bede’s story. But I figured there was a reason, and I accepted that maybe the last post was where you were going to leave it. I couldn’t imagine what you were going through. Thank you though, for finding the strength and time to share again. It is a real privilege to know Bede’s, and your family, story.
🌟As I read your post….A little ray of sunshine has come into my day…., heartfelt New Year wishes to darling Bede & family…. may the rays of sunlight touch your souls too…Lyn❤️
Thinking of you all, thank you for the update. Stay strong Bede, you are awesome. Wishing you all the best for 2017. xxxx
Bede and Dominic two such wonderful people. Thank goodness you found your magnificent words Izzy.
I was thinking f your family a few days ago wondering how your Bede was. Thank you for the update and hope you enjoy those days/weeks/months in the light.
Isabella, thank you so much for your post, and above all, thank you for the news. “Bede is well”, this is exactly the good news I’ve been expecting for such a long time. I wish you the best for 2017, happiness, health, and much more time with Bede. Bede has really touched my heart, he truly shines. Thank you for sharing his journey with us. I don’t believe in god, but I believe in the human beings, and I send you all my love, energy and positivity. Keep on fighting for your wonderful son, keep on loving and keep on smiling. You are not alone. Please, could you tell Bede I wish him a wonderful birthday tomorrow ? Here, in France, the 2nd of January is only tomorrow. Happy birthday, Bede, and happy new year to you all !
Izzy thank you for sharing your latest blog. It was very raw honest and uplifting.
Bede is amazing but so are you…you write so beautifully.
I hope 2017 still allows you to see some joy in your amazing life journey. Love to you and your family.
Caron (Bec’s mum) xxx x xxx
Thank you for your post. I have often thought of Bede and your family and keep checking for an update. Keep on enjoying that gorgeous boy and his infectious smile. Sarah in Perth x
Happy birthday Bede. Your smile is giving those closest to you all the strength to help create wonderful memories.
Wishing you all the strength, positive energy, love, light and peace for 2017. Xxx
A French hematologist said: Ajouter de la vie aux jours quand on ne peut plus ajouter de jours à la vie, which could be translated as “Add life to days when you can’t add days to life”. This sentence should be a reminder of how important love is. We should all enjoy every minute of our lives. Bede has a beautiful family. I really hope he’s doing well. Thank you for this lesson of life.