When I was a child, my dad who doesn’t say much, said that one of the best thing about me was that I was ‘fearless’.
That’s always stuck with me.
But these days I am full of fear. I bat it away. Sundays are the days we try and slow down. By slow down I mean not going out to do the food shop or rushing around doing three laundrys in one day. Our lives are relentless right now given the needs of the twins and Anaya, who sometimes gets sidelined, and who has needs just the same as any other 5 year old.
Sundays should also be the day when you don’t read anything online or in the papers. I used to love reading the Sunday papers with a cup of tea – that was BC (Before Children).
I read something today about how neuroblastoma is the leading killer of children with cancer. It has the lowest success rate or the highest relapse rate. I can’t even remember (so don’t quote me) but it was the worst of the worst. The most difficult to treat, the least invested in…
…and every day I think of my friends. But on Sundays, I also think about how my friends who have lost their children deal with Sundays. Do they still cry in the shower, do they smile sometimes, do they look for signs…do they still have a tightness deep in the pit of their stomachs…
Where do the dead go? What are we going to do if it comes back. You don’t discuss this with people because you’ll receive the only response they know ‘one day at a time’, ‘keep focusing on the positive’ and anything else. I don’t blame them. I’m grateful they have the courage to say something. I’m thankful. But there are no words that can make you feel positive when you are watching your child struggle or fighting for their life; you just need to keep mentally strong. I’m lucky I can.
However, I get scared on Sundays in particular. Sundays is when it just hits you more than other days. Sundays is about family time. The end of the week on the cusp of the new. A bit like us right now sailing out to sea sometime soon after all the rapids. Who knows where we will go next…or what will happen.
It’s much easier to get shot when you are still; and so thoughts turn to bullets and they cut deep.
I’m scared. When I read all the stories of other children, when I have seen as much as I have, I’m scared she’ll die. Of all the things in the world that could have happened to us, why this? Why my kids?
I just want you to know that the fear never leaves an oncology parent. I do a good job at staying positive most of the time. If you have to believe in something, believe in something positive. And if the truth is worse, then lie to yourself long enough to get through.
So in conclusion, I should read less and do more on Sundays.