B. Sinnatt

This story is not mine, it is my son’s, but as my son has only just turned 2 he is unable to tell it himself. As he has just turned 2 I don’t really know what he is aware of, what he is feeling and what he remembers. I do know how his story has affected me and my family and those around us. So I speak from my perspective. The only one I know.

I have always considered myself ‘Aware’. I was born into an expatriate family and I am now raising an expatriate family. My parents made me ‘aware’ of how privileged I was and how many people were not. I was ‘aware’ of the existence of poverty, hunger, homelessness and inequality. I have seen them first hand. However, the day our pediatrician told me “Your son has cancer” was the day I questioned my awareness. He was only 18 months old. As parents were blindsided. We were suddenly thrown into this dark world of not knowing, and being scared of the answers. We were educated quickly. Rounds of tests to ascertain stage and a treatment plan, and then almost immediately we found ourselves confined to a hospital room whilst poisonous chemicals were pumped into our 18 month old baby. Chemicals that we hoped would save his life.

Was I aware children got cancer too? Yes, I think so. However, I admit that I wasn’t aware that babies could be born with this horrible disease, or that some children were predisposed to it.

I wasn’t aware that the chemo gave your child more chances of developing other forms of cancer, and could damage their bodies physically and neurologically. I wasn’t aware of the gold ribbon or what it meant. I wasn’t aware that 46 children a day were diagnosed with cancer in the US alone. 7 children a day will die. These numbers are far higher in underdeveloped countries. I wasn’t aware that pediatric cancer is so very underfunded, under publicized and far from understood.

I also wasn’t aware of the new friends we would make and the love that we would be shown. I have witnessed compassion for my child from teenagers battling cancer with such amazing dignity that I am humbled. I am aware that there are miracles in pediatrics, and that sometimes hope for a miracle is all we have.

I am now aware how strong my family is. My son is a true warrior. My daughter is his advocate and voice, and I could not be prouder. And there are just no words to explain how my husband has held me up in the face of the unfaceable.

Yes, cancer is ugly, and I long for all our children to be free of it, but if you look you will see so much beauty in this world of cancer too. It is in the faces of our children, our heroes, that battle every day, in the love of their siblings, and in the strength and protective cocoon of their families that fight alongside them.

My eyes have been opened and this disease has changed us forever. My joy is in the little, everyday events and is always tinged with a hint of sadness. My sadness is in the big, life-changing events, but in them I always find a hint of joy.

So thank you Madison Steiner for all you do. Thank you for being AWARE. Thank you for caring. You are a beacon of hope, an admirable role model, and a true trailblazer. I am inspired by your dedication, and am just hanging onto your coat tails, coming along for the ride, and excited about where it will take us.