Last night I watched “The Fault in Our Stars” again. Such a beautiful and poignant film. But this time, I saw it with fresh eyes: every line, every sentiment seemed to touch my heart in a way it hasn’t before. I guess it is like taking up horse riding and then watching Black Beauty….it makes it all come alive but you notice things you’d never noticed before! For most of the film, I assumed it was because I myself have just been given the all clear after months of quick but gruelling treatment for cancer.
But then, as the situation of these terminally ill kids became more real to me and I began to truly connect to this beautiful film, a thought started to grow within my head: was I feeling emotionally attached to these kids because there was a similarity with my daughter and her friends? I pushed it quickly aside: nobody should, or could, compare anything in their world to the tragedy of a child with a fatal cancer. However, I’ve said it before, and I’m sorry if I offend anyone, but living with Lizzie’s illness has often made me feel like the parent of a terminally ill child.
Let me explain: I have hope every day that my beautiful child is making progress; some days she laughs more than others, she does stuff she hasn’t done for ages (like tidy her room…this is massive for me because I think if she wants her own space to be clear, her head must be clearing) or she simply engages more. Then if I dare suggest to her at some point that she is making tiny steps forward, she brings me down to earth with a bump by reminding me that it’s all relative and her urge to die grows daily. So the hope I cling on to is temporarily shot down in flames. Obviously I have no way of knowing if she will die as a result of her illness, and for this I count my blessings, but it is also true that every day could be her “best last day”.
‘That’s a line from the film: nobody ever knows when their best last day will be, and that’s the point. Only, if you are terminally ill, you kind of calculate if you are near the end, that it could be today. I live with the belief that every day should be lived to the full anyway but for my daughter, I guess I will never know. I will never be able to gauge it because her fate lies in her own hands for now. The point is, and what makes this different from the fact that any of us could die at any minute, that whilst I refuse to believe her illness is terminal, she believes it is.
The film depicts teenagers who find absolute solace and understanding in each other because nobody else truly “gets it”; only they understand the pain, the joy, the futility and the daily struggles of a terminal illness. They feed off of each other and spill unrestricted light into each other’s lives. My daughter has built friendships with kids in similar places to her; in the past, we watched and monitored these relationships with trepidation, fearful that they are teaching each other new ways to die; worried that she needed “normal” relationships with “normal” kids. But these young people in her world are some of the most amazing I have ever met: they are sensitive, inciteful, caring and smart, so bloody smart! They protect and buffer each other, they encourage and safeguard. Yep, they spill light and understanding into each other’s worlds because only they truly “get it”.
There are so many parallels. I would never be so cruel or insensitive to tell the parent of a child diagnosed with a terminal illness that I understand their pain, but there are parallels. As a parent, the big difference is that I have hope. I may check every morning to make sure my daughter is still alive, but I have hope. And that is the strongest foundation for anything in life and something for which I am truly, eternally grateful. It’s why I smile….and I smile a lot!
Stay strong x