Seven things I didn't know (and wish I had) when my child died

At the age of three, my daughter was diagnosed with leukaemia – she died just nineteen months later. That was twenty-two years ago. Through the devastation I started writing down my thoughts, and in time, these notes became the story of When Petals Fall. Losing a child is rare, and when Juliette first died I felt completely alone in the experience. These are some of the things I wish I had known:

1.     The guilt is huge.

Despite being told there was nothing I could have done, my inner voice repeated on a loop that I should have done more to keep her safe. I didn’t know that this guilt was normal. To deal with it, I turned it inwards, punishing my body for continuing to exist when my child’s body no longer did. I started long distance running and raising money for charity. This may have looked healthy, but my behaviour became a covert instrument with which to hurt myself. Because I’d survived my child, I deliberately ran despite injuries and in the worst of weather conditions. Training plans and physical pain created noise with which I attempted to block out emotional pain, and in the end it didn’t work. My grief at losing Juliette demanded to be felt. I know now that it wasn’t my fault that she died and that blaming yourself is just part of being a parent, but I wish I’d known sooner to be gentler with myself. I wish I’d understood that extreme emotion is not failure. It’s a natural, unavoidable process, and letting it happen instead of fighting it is the easier, kinder path.

2.     Grief is tiring.

Like, physically, bone-crushingly tiring. I’ve since read studies that have shown that bereavement of this magnitude doesn’t just happen in the brain. I don’t know why I found this so shocking, but it makes sense now that every cell in your body should experience grief too. I did not expect to sleep so heavily and wake up exhausted, aching, craving sleep again, not only for the ceasing of my daytime thoughts, but for the physical rest. The process aged me. At the time, I was glad to see proof of this in the mirror. I don’t feel like this anymore but back then, I welcomed this evidence that I was closer to my own death.

3.     Losing a child is not like other losses. 

I had a man say that he knew how I felt because he’d recently lost his dog. Someone else compared Juliette’s death to their divorce. These are extremes, but we all know that it’s against natural law to outlive your child, and no one except other parents who have lost children should come close to comparing their grief with yours. And even these griefs have differences. On the subject of other bereaved parents, with them you’re part of a fellowship no one wants to join. For me, these conversations and friendships have been invaluable.

4.     The most well-meaning people may still say the wrong thing.

For instance, when your beloved child has died, it is not comforting to be reminded that you have others. This was said to me, and of course the person intended it to be comforting. It was better (I guess) than being avoided entirely, but the most powerful words I ever heard were, ‘I’m so sorry she died. I have no idea how you must feel, and I don’t know what to say, but if you ever want to talk about her, I’m here.’ Also, I wish I’d known that you don’t always have to tell people truthfully how you’re doing. Sometimes, especially when I was having ‘a good day’ or could not predict someone’s reaction, I regretted opening up. Sometimes a simple, ‘I’m okay - thank you,’ would have done. You don’t owe people a total excavation of your emotions, just because they’ve asked. Sometimes, you just need to protect the open wound of your child’s loss.

5.     All relationships shift.

I was not the same person after losing Juliette. I think people expected me to go back to being the person I was – I know there was a time that I expected that too – but it didn’t happen. Things that used to matter, just didn’t anymore and when my values changed, a lot of friends drifted away. But in their place, I gained important others who I’d trust with my life. And it’s not only friends. For me, family relationships changed too. This was unsettling, but I understand it better now. I realise I’d been a person fulfilling a certain role for which my life until then had shaped me. When Juliette died, these old moulds shattered. I’ve noticed that grief prompts a desperation to hold onto familiar ways of being - there certainly was for me – but change happens, and I’ve found freedom and peace in embracing it.

6.     It won’t always feel this bad. 

At first, I didn’t want this to be true. Grieving Juliette’s absence was the mirror of my love, so to wish that pain away felt utterly wrong. I needed the sorrow to manifest my outrage that she had died. In other moments, I knew I had to manage better so that I could give my other children the lives they needed and deserved. Now I know those feelings of loss don’t ever go. What’s happened is I’ve grown around them, so they don’t fill so much of me.

7.     Happiness will have a different quality. 

Feeling happy, or even wishing for it, made me feel like a heartless monster when my daughter had died. It's different now. Twenty-two years on, into every moment of happiness my love for Juliette is infused. It's there as a gold thread, a Kintsugi ceramic piece. My beautiful child is not with me, but my love for her always is, and that has to be enough.

I'd love to hear your thoughts. I plan to write more on the above themes and upload some posts from my previous blog in the coming weeks.