The murmuring of 10 million women backward and forward in time, and right now, who have lost children.

Even as I rocked on my knees howling I detected soft breathing behind the roaring. I leaned in, listened. It was the murmuring of ten million mothers, backward and forward in time and right now who had lost children. They were lifting me up. holding me. They had woven a net of their broken hearts and they were keeping me safe. I realised that one day I would take my rightful place as a link in this web and I would hold my sister-mothers when their children died. Then, my only task was to grieve and be cradled in their love. (Words by Mirabai Starr)

Now it is my time to cradle you. My time to welcome you to a place to rest your weary hearts. A place to share your stories, your heart break, your hope. Your children. A place to listen.

The murmuring of 10 million women is a home to share your stories. Sharing first hand accounts of pregnancy and baby loss, as well as the journeys of little warriors with life limiting diagnosis and their families.

We are currently taking submission for both categories:

• Loss stories - blogs and interviews of baby loss, infant loss, child loss, pregnancy loss

• Diagnosis day stories - blogs and interviews of children living with a life limiting diagnosis and beyond.

If you are interested please email me or contact me on Instagram @the_lilyflower

How do you tell someone who has had a miscarriage that you are pregnant?

5 Things every new parent should be told!

1.     You can express colostrum before birth and use it to feed your newborn

Did you know that you can express colostrum from around 36 weeks and keep it frozen in sterile syringe vials? Take the vials with you when you go into labour and use it as a nutrient dense boost for your newborn. Expressed colostrum has traditionally been used for babies who are unable to latch. But it can also be used as an extra feed for newborns particularly on day 2 when mum is still waiting for her milk to come in.  Having some extra colostrum can help baby sleep longer and stay satisfied through the night to help you get just a little more sleep. I tried this little trick out when Rainbow Boy was born and it bought us a couple of extra hours sleep.

2.       Start using a playlist of soothing music from day one and it will become a magic sleep cue

Music is a wonderful way to soothe newborns, toddlers and children alike. If you start using a soothing playlist in the first few weeks of baby’s life, during wind down time, it will soon become a sleep cue.   For example play the same piano lullaby track every time while reading a book before bed. This is an easy way to create familiarity and sleep associations (babies love to be able to predict what is coming next).  The soothing playlist becomes particularly useful when you can’t get home to put baby down for a nap or are staying in new environments. The sleep music signifies that it’s to get ready for sleep regardless of where your travels take you.

3.     Use a timer!

When your baby is crying it can be really stressful. Often it can feel like they have been crying for hours, when in reality it has only been three minutes. If your baby’s crying is stressing you out, you are doing sleep training, or you are waiting to see if baby will self settle before going into her room, set a timer to help give you a reality check of how long the crying been going on for. I am constantly amazed how much longer it feels than it really is. I also find it useful when rocking baby in the middle of the night in the dark or figuring out how much longer I need to keep patting baby in the cot for. If I don’t have a timer I’ll often count the seconds out in my head! 

4.     Most babies fight the swaddles, but it doesn’t mean they don’t like it once they are swaddled. Persist.

It is common for new babies to resist being swaddled. But have you ever seen a baby who has surrendered to being swaddled after putting up a major fight? When they are finally wrapped, the most exquisite sigh of relaxation goes through their tiny little body.  Most babies do enjoy the snugness of a swaddle wrap even if they resist the act of being swaddled. If you think your baby doesn’t like being swaddled its worth experimenting with a few different variations and (it sounds counter-intuitive) but even try swaddling a little more snugly.

5.     White noise will help you sleep

Yes you mamma bear, and the baby too! Newborns make lots of funny noises when they sleep, big grunts and sighs. If your baby is sleeping in the same room as you, chances are you bolt upright at every grunt, convinced baby is about to cry. Not only does this mean you never fully elax to fall into a deep sleep, but your movements can also wake baby up and before you know it a viscous cycle of disturbance occurs. Use some white noise, like rainfall sounds on Spotify to drown out the baby grunts and it will help you to relax and fall asleep. And just maybe keep baby asleep too.

Why I talk about my dead baby.

‘Why does she keep talking about her? Shouldn’t she be over it? Do you think there is something wrong with her? She needs to move on.’

Two years ago my baby died, of a rare brain condition known as Miller Dieker Syndrome. Only 2 babies every year in Australia are diagnosed with this condition.

I had a straightforward pregnancy until a routine ultrasound at 36 weeks showed an abnormal lack of development in my baby’s brain. It was the day my life changed forever. We were told we might have two years with our child, if we were lucky.

Devastatingly, we were robbed of even that and Lily died when she was just 10 months and 15 days old.  Since Lily died, I am a different person. I have different beliefs, a different outlook on life and I am still figuring out how to survive without my child.

But unexpectedly one of the hardest things I have faced, is the expectation from society to get over it and stop talking about it so much. I remember being asked when I was going back to work, only a week after Lily died.

I was shocked, my baby had been dead for just days and already there was an expectation that I get on with my life. This question was only the beginning, and two years on I feel a definite sense that I should be ‘over it’.

‘Why does she keep going on about it? Do you think there is something wrong with her?’ I hear a lady I met once before, whisper loudly across the cafe to another ‘friend’ I vaguely know.

This is the sentiment that we, the grieving, live with. Heaped carelessly on top of our loss. We see the little looks, the hushed voices, the judgement. I know I am not alone in this feeling. I’ve had thousands of other baby loss mothers connect with me on social media and agree that they feel this pressure to stop talking about their babies too. But why? Who does it serve to keep silent?

The truth is, talking about our dead children allows us to ‘heal’, it allows us to process and accept that they are no longer here, and it lets us keep them close and alive in our memories. Stifling that conversation only makes things worse.

The simple answer to the question is: We talk about them to remember them, to keep their faces, their names, their spirits alive. We talk about them because we love them and time cannot lessen that or silence us. We talk about them because in the year 2020 we recognise that it is healthy to do so and that grief is not a mental illness. There is nothing ‘wrong with us’. In fact, I have learnt that being able to speak freely about my baby is paramount to my mental health.

Why do I do it so publicly? Because there are hundreds and thousands of us, feeling so damn isolated. So lonely in our loss. Yet we are not alone. I still remember being stunned the day I found out there were hashtags for baby loss. ‘There are other people online like me?’

I couldn’t believe it. Until I went onto social media and I found my tribe. Mothers from across the world on the same time table of grief as me. Parents who were desperate to share photos of their babies, for others to acknowledge their children’s name, to share in the joy of their existence.

Talking about our children helps others who have experienced loss to open up. Recently my elderly neighbor came over to introduce herself. I reminded her that we had met before and she replied confused

‘But didn’t you have a baby girl called Lily?’

I explained what had happened and to my utter surprise she broke down and told me about the baby she had born 40 years ago who had died just days after birth.

‘We weren’t allowed to talk about it back then, but I still think about my baby every single day. If I can give you any advice - keep talking about your girl. Don’t let them shut you up’.

So I will continue to talk about Lily. Because she is my child and I am her mother. Because when I talk about her it helps others talk about their loss. If talking about it in a public forum can reach just one person and help them feel less alone, it is worth all of the judgement.

So next time you hear someone say ‘Why does she keep talking about losing her baby?’

Please tell them, ‘She talks about it because that was her child. She talks about it to help others talk about their loss, she talks about it because its normal and healthy to do so’.

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.

Talking about Lily and baby loss on Channel 7's Daily Edition for the first time

On Thursday 1 August 2019 I went live on national TV to talk about our girl and our journey through love and loss to creating Lily’s legacy. 

It is safe to say I was very nervous at the thought of talking about Lily to the nation. If I am honest, I’ve always hated talking about the details of Lily’s diagnosis because it hurts too much. It might sound silly after all we’ve been through, but it still makes it more real. More raw, even more shocking somehow. 

When we first got Lily’s diagnosis it was incorrectly just given as a broad term of Lissencephaly. Lissencephaly literally translates to mean smooth brain. It is a rare, gene-linked brain malformation characterised by the absence of normal folds in the cerebral cortex. I hated it. I still do hate the word, and I experience an incredibly complex range of emotions when it comes to talking about it.

 I wish it didn’t exist, bringing with it the terrible ravages of seizures and global development delay. Shortly after Lily was born we were given her even more sever diagnosis of Miller Dieker Syndrome. This couldn’t be confirmed until they were able to check DNA specimens . Miller Dieker Syndrome carries with it an even shorter life expectancy, even more severe seizures, associated symptoms and global development delays.  MDS is a microdeletion syndrome involving loss of the gene PAFAH1B1 on chromosome 17. A deletion of chromosome 17p13.3 deletion to be precise. 

 The long winded point I am getting to, is that the fact that I was able to go on national TV and talk about it made me realise how far I have come in this ‘ grief  journey’. I know I will never get over the loss of my girl, but the fact I could talk about her diagnosis without floods of tears or the walls of anxiety closing in on me – is a massive deal and I am pretty proud of myself. I was so proud of Lily too and cant think of a better face for TV. Our shining angekl should grace the screens everyday please! 

I’m also a bit begrudging in admitting that time does help. Hot tip – don’t say to someone who has just experienced a devastating loss that ‘time heals all wounds’. Because it doesn’t. But two years down the track I am open to admitting that time does soften the edges of the acute pain and the nightmare horror of losing your baby, just a little bit. 

You can watch the TV interview here and read about the experience of going on TV in my next blog post. 

Are You Still using the ‘R’ Word?

You are a retard.

I remember when I was in primary school way back in the early 90’s, that word flowed off the tongue without a second thought.  Everyone used it. I never paused to think about its true intent. Maybe I still wouldn’t have given it a second thought if I hadn’t had a daughter born with a severe disability.

Suddenly that word took on its true meaning. Every single time I heard it uttered, it felt like someone had taken a knife and plunged it in my heart. I relived Lily’s diagnosis all over again, her limited life expectancy, her prognosis; it all flashed before my eyes.

Every single time I hear that word I want to scream. Because, yes my lovely readers – yes. My baby was retarded.  

But she was so much more than that. She was a princess warrior, a bringer of love and light, a life changing, truth telling, joy bringing wonder baby. An angel, who now lives among the stars.

Help me make her a game changer too. Together we can use the power of her story to eradicate the R word from our speech.

I am shocked how often I hear people still using it in 2019.  Lovely people who do not intend to hurt. But it’s not good enough anymore to say ‘oh I don’t mean anything by it’.  

In my view, the R word is a form of vitriol targeted at an often defenseless population of people, who suffer daily from discrimination that is very real and painful.

It is time to stop. Today.

This post is not about pointing the finger or assigning blame.  As a society we are all guilty, particularly any one from my early 90’s primary school cohort. I am putting my hand up right now to say I’ve been guilty.

It’s about creating an opportunity to reflect and make change.  Admit it. Draw a line in the sand and consciously commit to eradicating the ‘R’ word from your language. Pick a new word and stick with it and if you do find that you accidently slip up – call yourself out on it. Use it as an opportunity to educate others. Call your friends out on it, talk about why it does hurts to use this word. Pledge to donate $2 to Lily’s fund if you say it.  Together we can create a game changing movement. We can remove the R word.

Are you with me?

Please please tag, share this post on @thelilyflower_ on Instagram

Lily’s first seizures

Would you be able to spot a seizure? When Lily was diagnosed we were told to expect seizures would occur if not from birth, it would happen eventually. It was a done deal. The closest I had come to epilepsy before that was knowing one or two friends at school who’d had seizures. They lived fairly ‘nuro typical’ lives but the thought of seizures happening to a baby terrified me.

As I started to research, I learnt that seizures can come in all shapes and sizes, from absent seizures (ever known someone who just ‘vagued’ out every now and then ?) to tonic-clonic seizure, the type most people think of when they imagine seizures. The type Lily had were called Infantile Spasms and they can be very difficult to spot initially often misdiagnosed as reflux or normal baby movements. Lily was about 4 months old when her seizures began although it hurts to say that I sometimes look back on her videos now and I think I can spot seizure activity much earlier (the benefit of a now practiced eye).

It started the week Will had flown overseas for a work event, and my mum had flown over from Tasmania to help me with Lily. Thank goodness. The night before the seizures started we had some bad news from my Dad who had stayed in Tasmania for work as he was on call at the local hospital. He called to tell us was flying over to Melbourne in the morning to have a suspected malignancy in his lower spine looked at immediately. It had been discovered under MRI by work colleagues that day and they were worried enough to want him over in Melbourne for further investigation. I just remember crumpling. Looking at mum, I cried ‘What else can go wrong’.

Little did I know that the next day Lily’s seizures would begin. That next day Dad arrived. Both of my parents have extensive medical experience and are incredibly cool in a crisis. Not cool and collected if preparing for Christmas Day luncheon or working out how many cars are required to get a bridal party to a wedding ceremony, but throw a major medical incident at them and you get the calmest most rational people in Australia. Mum is a retired midwife and maternal child health nurse and brilliant with babies. Dad an experienced and very senior ear nose and throat surgeon. They’ve both dealt with their share of drama and emergency in their lives. I truly believe their medical calm instilled Will and I with the confidence to feel equipped to manage most of Lily’s life at home. 

That evening Dad and I sat outside on the deck calmly sipping wine, talking about his procedures to come the next day. Mum walked out, and very calmly said ‘Darling, I’ve been holding Lily and she’s started doing these arm movements and jerking’. I leaped up grabbed Lily and then – probably to my parents alarm – grabbed my phone and began videoing what she was doing. I was fairly certain these were the form of seizures known as infantile spasms. I sent the video off to her pediatrician who got in touch and told us to come in first thing in the morning. I don’t know why but it didn’t occur to us to go to the ER. I suppose, I had 3 medical opinions by then and Lily had settled down. By that stage I think I had entered my own calm. A kind of action mode calm. I knew I needed to get through this. Get treatment for Lily, get Dad sorted and I could leave falling apart until later when all of the emergencies were dealt with and when my Will was home from his work trip. Oh poor Will, always overseas working when drama occurred (he had been in the USA when I had my ruptured ectopic pregnancy the year before). I called him in the Philippines to let him know what was going on, feeling bad he would get that message so far away again.

The next morning we were up early. I managed to drive Dad to his first medical appointment and then head straight into Lily’s doctor. Dr John Mills, luckily had his consulting rooms based close by in East Melbourne. Once there he gave me a script and told us to drive to the hospital pharmacy as that was the only place we could pick up the particular medicine in a hurry. I think it was for a drug called Kepra. At that stage John hadn’t heard back from the neurologist and Kepra is used to treat seizures but not typically Infantile Spasms or on first presentation.  So there was a question mark around its effectiveness. But back into the car to drive over to the pharmacy at the Royal Children’s we went. 

Once I got to the hospital to collect the script, John called me again and advised there was a change of plans. The neurologist has seen the video and diagnosed infantile spasms (no surprise to me) and we now needed to get admitted via the ER to get the right treatment and that required an EEG. I remember being gutted as I felt with all my being that life was better for Lily at home not in hospital. But of course I wanted her to get the right treatment. So into the ER we went. 

At that stage my Dad had been left on his own to go through his tests at another hospital back across town as mum had to make the decision to come with me. We went to the ER for what was the first time with Lily (and turned out to actually be her only time), and fortunately we were allowed straight through to a little room. Wonderful John had called ahead and let them know we were coming, so we were not required to wait with all the other kids with minor scrapes and broken bones. I was still relatively calm but Lily’s seizures had started to ramp up by then and were lasting up to 45 minutes or an hour in length. It was absolutely heartbreaking to watch. Just helplessly watching my baby girl seizing over and over again. 

The Nuro team came down and explained they needed to do an EEG to have a look at what was going on. This required all those little electrodes to be glued onto her head as you can see in the photo. They glued them on as I think they were expecting us to be in hospital for some time (if having an EEG as an outpatient they might use a kind of blu tac instead. 

I remember having to breastfeed her to get her to calm down and just having my boobs out in the ER not noticing how exposed I was until somebody, some kind soul, drew the curtain around us to give us some privacy. (Mum was required to step out of the room while they recorded the EEG at that stage or I am sure she would have done this too). I also remember calling the palliative care team to let them know we were here. I loved the palliative care team. They were so warm, so comforting and so kind.  It felt good seeing them come into our little ER room to say hi. To confirm our plans if anything should take a turn for even worse. It was at that time we talked about what Lily liked and we told them how she loved music. That led to Lily’s weekly music therapy sessions with Sarah Punch our number one, favorite, musician in the world. 

Lily was a star on the EEG, they recorded all the seizure activity they needed in record time (pardon the pun). And they officially confirmed Infantile Spasms and West Syndrome. Yet more diagnosis’. They explained that a steroid protocol would be the first step in getting these under control. Basically extremely high levels of steroids for a period of time and then a tapered wean off. They wanted to admit us into the Nuro ward but it was also obvious that the ward was incredibly full at the moment and they didn’t have a bed for her.

Something stirred in me as I thought of how much Lily loved her little bassinet next to our bed and I remember asking why she needed to be in hospital once the meds had been administered. Couldn’t I do it myself? I asked. 

‘She needs to be observed’ They said.

‘I’ll observe her’, I said.

‘Err, we need to do blood pressure, heart rate etc”, They said.

‘Oh’, I said. And then I went on,

‘I want the best for Lily, I want her to have the best medical care and if you are saying she needs to be here this is exactly where we will stay, but if it is just to monitor her and someone checking her vitals once a day, surely there is some other way you can do that?’.

I think I even offered to drive her over a couple of times a day instead. I just knew it would be better for her at home, in her space.  

Somewhere in that conversation the Nuro asked me if I had a medical background and I said ‘Nope just a law nerd’. She replied  ‘Oh you just seem to have a good grasp of this and all the names of the drugs we are talking about so I though you must have a medical back ground.’  Somehow through the worry and the nerves, I still remember thinking ‘research nerd plus medical parents = practically a doctor, am I right?’. A ridiculous giggle started to beam up inside me. But thankfully I kept this to myself. But from the parents I have met on this journey I believe that often special needs parents are doctors, nurses, therapists, advocates, investigators and paramedics all wrapped up in one.  They have to be because often there is no other choice.

After a bit of discussion among themselves, it emerged that they could offer Lily a ‘hospital in the home’ service. This meant she was technically still an inpatient but would be at home with a nurse coming to do home visits to check vitals and reporting to a doctor on the phone. How incredible. I am not usre if this service is still being offered but if you find yourself in a hospital in a similar situation I really encourage you to ask for it. I think we had more focus and attention than we might of had she stayed at home because when the nurse came each time, he or she stayed for a set period of time and could focus solely on us. No other distractions.  So just like that after a few more hours of admin, we bundled out little girl back in the car. Back across the city to our little home to find out about my poor old Dad’s day and await Will’s return flight from Manila.

* I’m happy to report that after a successful operation dads tumor was removed, found not malignant and he is healthy and calm as ever*  

* Steroids were a real bitch, awful for Lily and awful for mummy and daddy to watch.  The same sort of ‘roid rage and extreme hunger that a ‘roid junkie at the gym might experience, the upshot was our skinny girl bulked up a bit*

*Steroids worked initially and for 6 weeks after the wean off Lily was seizure free, then the seizures came back with a vengeance and we moved onto a different medication*

Surviving the festive season when your child has died

If you have lost a child, Christmas can be a brutal reminder of how things should have been. I have survived two Christmases without my Lily. The first was awful. The second almost worse because I was worried people would assume we were ‘over it’. This third one, I am trying to find the balance between honoring my girl and creating the magic of Christmas for her little brother.

Over the last 2.5 years I have learnt there are some things that can make celebrations and festive moments more bearable, and I have met some lovely ‘loss parents’ who have shared their advice and supported me. It is a privilege to pass our learned experience on, in the hope that any of it might help. So here are my five tips to survive the festive season when you are a grieving parent.

1. Anticipate the grief.

I don’t want to say it’s going to completely suck. But it is going to suck. Maybe a lot. However, there is nothing worse than being blindsided on Christmas morning and totally unprepared for it. If you know ‘the big cry’ is coming you can carve out some space to honour it. I am a big believer in giving your feelings some space to hang out. Bottling it up – that way leads to disaster.

So – check in with yourself.

Do it now.

You might have been growing more anxious without really catching onto why. Breathe into it and recognise the sign and signals your body is sending you. Are you feeling more emotional, more stressed? A lot of the time the feelings creep up on you. I know I had to have a little chat with myself  this week after bursting into tears watching the Wiggles (note to self: Apples and Banana’s is not an emotional song).

1. Talk to your friends and family about how you want them to remember your kiddo

So you have checked in with yourself, now it is time to check in with whomever you are spending the festive season. (Oh and don’t forget your partner – I was so busy checking in with myself the first year, that I let my husband be totally blindsided by his grief).

Communicate what you want your family and friends to do. I can’t say this enough. They might be really unsure if they should mention your kiddo, they might be longing to include them but just don’t know how. You need to take the lead. Let them know what you want. You can send an email or text if you don’t want to talk about it in person.

1. Let loved ones know that it is going to be hard and that you might say NO to some activities.

Mostly friends and family want to be supportive, but they might think it best done smoothing everything over, or trying to make it cheerful and happy. Let them know it is going to be hard. Tell them that it doesn’t need to be happy the entire time. The best family connections can come in the quiet moments after allowing the tears to flow, and taking the pressure off  ‘christmas cheer’, can make it naturally easier.  And remember that you have every right to say ‘No thanks’, to anything at all. You don’t have to participate in things to make everyone else feel happy. Stay as long as you want and leave whenever you want (think about having a secret word which means ‘let get the hell out of here’ with your partner).

1. Plan ahead and create a ritual or way to include your beautiful child into Christmas Day.

This might be lighting a special candle at the start of the day, writing messages on postcards, playing songs, taking ten minutes before eating to talk about your favorite memory. We have personalised Christmas decorations on our tree with Lily’s name and her photo on a star at the top of the tree. We will have a big bunch of lilies on the table, and this year we are talking about floating some flowers (lilies of course) out into the ocean on Christmas morning.

1. Buy gifts for your family and invite those spending Christmas day to do so to.

Opening presents is a really hard moment, and extra sad if there is nothing under the tree for your child. Buy a keepsake or something which can be donated later on. It doesn’t have to be expensive or dramatic. This year I have bought the book ‘Claris the Chicest Mouse in Paris’ for Lily. It is all wrapped up with her name on it ready for Christmas morning. If you have other children, you could consider creating a tradition where you buy them a special gift from your missing child.

Our first Christmas, my in law’s registered a star in Lily’s name and it was such a precious gift that it has started a tradition of its own. We spend Christmas night gazing and looking for her star.

Blog post by Priyanka Saha from @thelilyflower_ and The Lily Calvert Fund lilycalvert.com

Lily is live across the nation

On Thursday 1 August I went live on Channel 7’s Daily Edition to talk about Lily and the Foundation

When my lovely friend Alice approached me about speaking on national TV to talk about Lily I was so excited and nervous.  I couldn’t think of  better way  to spread the word of our girl and the work we are trying to do. So of course I jumped at the opportunity and said yes. 

Then I texted Lily’s doctor, the wonderful John Mills assuring him that although I needed to talk to him it wasn’t about anything medical! He readily agreed to accompany me to talk about the medical side of things, and together with Alice and the Channel 7 production team we got a date booked in and were ready to go. 

The morning of the big day I headed off to get my hair and make-up done, and then John and I nervously arrived half an hour early at Channel 7’s  studio. I think the nerves would have really gotten to me if it wasn’t for the lovely assistant who greeted us and she said ‘remember it will go very quickly so whatever happens enjoy yourselves’. In that moment I breathed a big breath out and relaxed. She was right – I was here to tell the world about the most beautiful little girl who ever existed and I would enjoy every nerve wracking moment of it. 

And I did!

And it was over in 5 minutes flat!

And I am so pleased that I enjoyed it.

Check out the interview here

Now that I’ve got the experience of my first live TV cross out of the way Id be happy do more media. The weirdest bit is that we were doing a cross from the Melbourne studio to Sydney so we weren’t actually in the room with the TV presenters – kind of hard to really get on the same level with someone when you are speaking to a camera and not their face!