Speaking about Lily at the Royal Children’s Hospital Memorial Day 1 August 2019

This is the speech that Priyanka gave at the Royal Children’s Hospital memorial day. The theme of the event was ‘all the colours of my day’ and speakers were asked to include the theme into their talk. 

This is Lily. She was born on 7 September, 2016. Isn’t she beautiful. I want to stop here, before the dreadful hitch. Because just like yours, my baby died. She died before her first birthday at 10 months and 15 days old. Our story begins at 36 weeks of pregnancy. My doctor sent me for a sizing scan, and then all the colour seeped out of our world.

The baby’s brain development was not present. We were referred for an MRI. The results were catastrophic. A general life expectancy of 2 years.  To be honest I was a bit smug about my life up until that point. Everything was going so well. I look back and wonder if there were warning signs I didn’t see. Does anyone else feel like that? Like, wasn’t there something I could have done? As most of you here will know. Hindsight is the most infuriating of things, You can’t change the past.

Nothing can ever prepare you for being told that your child is going to die. The shock. You hear it happening to other people but you don’t actually think it will happen to you. Until it does. I still wake up and think – this isn’t my life is it?

Everything became shades of grey and black. We swung between hope (maybe they got it wrong, maybe she’ll pull through) to the blackness of despair. Then back to the grey hope, then back to despair. Mostly despair.

Throughout those first few weeks of taking in the diagnosis a funny thing happened, and I’m not sure how to explain it. I was numb but at the same time everything else was hyper defined, more real, more raw.

Despite the sadness, the grief. My husband and I felt an overwhelming sense of love. For each other and for Lily. It was so strong it took my breath away  The world still black and white, became punctuated with splashes of colour. Laser beams of hot pink, neon green, glowing blue.

Living doesn’t get any more on the edge than that. It was a permanent adrenaline rush, like freefalling without a parachute. A few weeks into Lily’s life, clinical results confirmed a positive for the most severe form of her condition, Miller Dieker Syndrome. Her diagnosis couldn’t get any worse.

And just like that in a cold consulting room, the final threads of hope floated away. But we couldn’t dwell, we needed to take those 2 years and run with them. Soak it all up, watch her smile and grow, show her the world, swim in the ocean and everything else we could steal along the way. There was so much joy that this little girl brought. She conjured it out of thin air.

For a while the world lit up. When Lily was born she started to feed, this was something we had been told would be unlikely. But from the beginning to the end our little girl didn’t follow the rule book, and against all odds she began to breastfeed. We were able to leave the hospital, no NICU, no feeding tube.  We took our baby girl home.

Despite the seriousness of her condition, life was mostly calm, peaceful even. The days passed in pastel coloured hues of soft pinks and yellows. 

And somehow it felt like she lived so much longer than just 10 months and 15 days. She lived an entire lifetime, her lifetime. It’s hard to explain how every moment counted for more, for years, for decades.

The hardest thing about parenting a child who is going to die is accepting that you are parenting without a future. You are parenting towards the grave; unlike traditional parents who are striving constantly for that next milestone. There is no parenting guide, or sleep school for how to prepare for your own child’s death. Its horribly isolating. You can’t attend a new parents group or chat with mums in the park.

Ideas for the future and dreams of what life might look like go out the window. I sometimes get cross when people talk about ‘living in the moment’ like it’s this wonderful accomplishment. I have learnt that being free to plan for the future is a luxury that people take for granted.

When your child dies there are so many additional losses –for us it was Lily’s first steps, her first words, watching her play with her younger brother, right up to her daddy walking her down the aisle on her wedding day. Instead, I watched my husband carry our beautiful daughter in a casket down the aisle.

We had been asked to do the impossible. To accept that our job was to parent Lily towards death – make the most of every moment that she had, and somehow survive afterwards.

Not long after Lily died I read an article by an author called Emily Rapp. She wrote about this impossible task of parenting toward grave and compares it with the idea of being a tiger parent –  if you are not familiar with the term – a tiger parent is the type of parent who keeps pushing their child to success, to become something spectacular, a child prodigy maybe.

She says: ‘I will never be a tiger mum, the mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible. To help our children live with minimal discomfort and maximum dignity. We will not launch our children into bright and promising futures but we will see them into early graves. This requires a new ferocity, a new way of thinking, a new animal.

We are dragon parents, fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now. For the sake of parenting, not for the future.

I like this concept of a dragon parent. This new ferocity. It means we’ve faced the worst, we are still standing. We can face anything, that comes now. I hold onto that that thought on mornings when I wake up and think I can’t do it today.

Yes I can. I can breathe fire. With Lily’s death, numbness returned, draining those soft baby colours away, ushering in the now familiar black and the grey. I spent 10 months and 15 days knowing this terrible thing was going to happen. That Lily would die. But I never really thought about what happened after.

Ever notice how grief is sold to us like a mountain climb or a marathon. We just need to get through it, or over it, or beyond it and then everything will be ok. Never mind that our lives are forever severed.

We must look for the good that is yet to come. Accept that things happen for a reason! Or the one I hate the most ‘put that positive energy out there’.  This narrative is so misleading. It makes fools out of the grieving and anyone who tries to comfort us.

I recall with shame the things I said or didn’t say to those who had lost someone. Before this happened to me.  I marvelled that people could look at me and not know what had happened. How was it not stamped on my forehead. Honestly, how did the world keep turning.

I sought refuge in those who had also lost. I made connections with mothers across the world. Mothers on my timetable of grief. And slowly I started to see the truth of it. There is strength in these feelings. A powerfulness in being able to sit with this grief. To make space for it.

And the big realisation came: I don’t ever get over it.  The thing that had been staring me in the face the whole time.  That was as close as it came to an ‘ahhaaa moment’.  I will never get over losing Lily. I don’t move on, I move forward with her. And that is ok.

One day I work up with this burning momentum, this energy to paint the world in Lily’s pinks. My husband and I set about creating a legacy for Lily, we set up the lily calvert foundation –  to help other families like ours. It gave me a focus, a way to remember her every day. To talk about her every day.

I will never get over the loss of my baby girl. My sweet pink princess. But I now know there is no marathon. There is no mountain to climb over. There can be joy, there can be laughter and it exists with everything else. And that is why I am standing here today. To tell you about the little girl who taught me everything. That gratitude and grief don’t cancel each other out, happiness and sadness can sit side by side.