Out on on a limb

A few months ago I received an email from the Royal Children's Hospital inviting us to their annual Memorial event - an afternoon to honour and remember babies and children who had died (and who had spent some time at the RCH). They were also looking for 2 parents who would be willing to speak at the event.

When I read this I immediately thought, "Yes, I want to speak about Leroy". Peter and I had never been to an event like this before, but I felt like I was ready to speak publicly, and I knew the process of writing my story and speaking at the memorial would be great for my soul. 

Thankfully, we had lots of support at home, and Dylan and Ruben were taken care of whilst we went to the Royal Children's Hospital in Melbourne for the day.

I started writing a few months ahead, as I knew the process of telling my story would bring up lots of memories and emotions, and I really wanted to honour Leroy and our journey.

I was really nervous beforehand, and I was very thankful that the other parent speaker went after me - I was crying throughout her speech, and don't think I could have gotten through mine if I had spoken after her.

There were a couple of hundred people in the auditorium and it was a beautiful event. We got to talk with lots of other families afterwards, and I am really glad I shared my story.

There is a video and also text if you prefer reading.

My Story

I feel very moved, and very fortunate to be here with you all, honouring our beloved children and babies who have died.

I have my hanky handy and I know you will understand if I need to use it.

Although each and every one of us has had our own very unique experience of parenthood and child loss, it is my hope that you find some common ground in what I share today.

In March 2012 our second child, Leroy, was born. Leroy’s birth was beautiful, until after his head was born. His shoulders got stuck and during the few minutes it took to free him, he body was starved of oxygen. He was not breathing when he was born, and was resuscitated and transferred to RHC.

Some of those early days are a haze, some are crystal clear. I listened to all the staff, stayed by Leroy’s side, cried and cried, and expressed my breast milk around the clock, hoping that this was all a bad dream.

A few days later the MRI showed complete and utter devastation of Leroy’s brain. It was difficult to come to terms with. Leroy’s hearing and eyesight were severely compromised, he could not regulate his body temperature, and he could not suck or swallow. Leroy was not moving, or crying and could only breath safely on his side or front, on an incline.

The reality hit home when staff told us that the “best outcome for Leroy would be that he would die in our care at home”.

We took on getting trained by the hospital staff, as we desperately wanted to take Leroy home.

Leroy was at RCH for 6 weeks, and it felt like a very long time.

One group of incredible people at RCH who made our life with Leroy at home possible, was the Family Choice Program.  Shortly after getting Leroy home, they had found and trained some amazing people in how to care for Leroy so we could get some respite.

Leroy’s cot was in our bedroom, so that we could hear his breathing. Because Leroy could not suck or swallow, we needed to suction his mouth and throat many, many times per day, to ensure his saliva and secretions didn’t get into his lungs and cause aspiration. We had to be able to hear when he needed suctioning, especially throughout the night.

Three nights per week, we had one of these fabulous carers come and take care of Leroy for 8 hours overnight whilst we slept. It was an absolute lifesaver.  It meant we could get some rest and keep up our high level of care of Leroy at home.

Having Leroy at home meant to the world to us, to be able to just hang out, be a family, all together, and to live life as normally as we could.

It also meant we could try different therapies. Feldenkrais sessions were invaluable for Leroy and we also started working with the Australian Institute for the Achievement of Human Potential who are specialists in working with babies and children with brain injuries.

They were great.

We treasure so many memories. Our walks in the neighbouring forest, our baths together, our hours and hours of skin to skin cuddles, Leroy’s beautiful noises he would sometimes make, and his calmness.

To see Dylan, our eldest, who was 2 at the time, and Leroy together, was priceless.

They were many dark times as well.

I kept hoping that things would miraculously get better.  But they didn’t

I wanted to go to sleep and never wake up

It took everything I had just to hold myself together

Through it all, we were acutely aware that we weren’t keeping in touch with our friends and extended family.  So many people were supporting us, and we were overwhelmed by everyone’s generosity.

I started writing a blog called Loving Leroy so we could share our journey, and also open up the conversation about grief. It was much easier to write down how I was feeling when the words came to me, rather than try to express it verbally in conversations, multiple times.

We had our beautiful Leroy with us for 7 months. We enjoyed every minute of every day we had with Leroy.

One night in October we awoke to find that Leroy was not breathing. My husband Peter began resuscitation and I called an ambulance.

They stabilised Leroy and I held him on my chest whilst we were transferred to RCH.

Leroy had been without oxygen for some time, and although his heart was strong, the likely additional damage to his brain was extensive. 

Peter and I had come to an agreement that if we ever felt that Leroy showed us some kind of sign that he had had enough, that we would let him go.  That time had come.

We were set up in the bereavement room and Leroy’s tubes were removed.  We held Leroy and cried, and told him how much we loved him, how much love he had brought to us. We told him it was ok to go, and that he would always be with us.

My mum and my sister arrived with Dylan our youngest, and we were all able to be together to say goodbye.

Peter felt Leroy’s breathing change and passed him to me. I laid our precious boy on my chest, heart to heart. I had my hand on Leroy’s back and felt him take his last two breaths as I whispered “I love you, I love you, I love you”.  And then he was gone.

We arranged to take Leroy home with us. It was the first time I had seen Leroy look peaceful.

We had a private cremation and service, which we ran ourselves, just for the immediate family.

We had a funeral service at our property, over looking the forest. It was hard, and wonderful, a bit surreal, and full of love and compassion.

The story of our life since that time is like many other bereaved parents.

We have dealt with so many emotions. Raw, heart-wrenching grief.

Relief, and then guilt for feeling relieved.

Anger. I hated the universe and everything in it. I trusted life, and the universe, and god and the angels. How could this have happened?

I was jealous. Jealous of other perfect healthy families. I didn’t want to be near newborn or young babies.  And I definitely could not hold a baby.

The first of everything was the hardest. Two months after Leroy died it was Christmas. That first Christmas was horrible, and I was impossible to be around. All that joy, love, family, and togetherness was just too much.

It was after that that I decided I needed external help, I was drowning in my emotions.

The Centre for Grief and Bereavement had a local counsellor in the town where we lived.  I met Miss A (A for angel), who was a very experienced grief and trauma counsellor and we set up regular sessions. Thankfully the sessions were at no cost to us, so we didn’t have the financial burden of worrying about how often we could afford see her.  Peter also saw Miss A for a while, too, which was fantastic.

My intention in getting counselling was to ease my suffering and to get some coping strategies.

Most of all, I didn’t want Leroy’s death to define me. I wanted to honour his spirit and his life, by living my life fully. 

Miss A had a lot of tools in her trauma and grief tool belt. I tried everything she had. This included the emotional freedom technique, brainspotting and meditation. Miss A gave me so many fantastic, practical things to implement, and different ways of thinking about things. She could see what I was blind to, and she always went at my pace, with no judgement. And she listened. Sometimes this was all I needed.

It wasn’t easy, and sometimes it was confronting and very uncomfortable, but it all was worth it.

During that time, my husband Peter and I went to  two Very Special Kids ‘Bereaved Parents Weekends’. These events were so powerful, and I don’t quite have the words to express the lasting impact they have had on us both.

I saw my grief counsellor for three years, sometimes frequently, every fortnight, or monthly, and after a year or so, much less frequently, basically when I felt I needed to see her.

I know counselling is not for everyone, but for me, it has been a very healing and empowering experience.

It has also given me freedom from the suffering.  The misery I was feeling was hooked in with some crippling beliefs I had unknowingly created. 

My belief that I had failed Leroy, on many levels

My belief that if I was happy and enjoying life, that this somehow diminished my love for Leroy and the significance of his life

My belief that I had been majorly done over, and therefore I didn’t want to give anymore. I was done

Grief counselling helped me to acknowledge these beliefs, and many others, and let them all go. It also dealt with the layers of trauma that were deep within me.

With the suffering and trauma now gone, I am able to feel my sadness and let it wash over me. I don’t have to resist it anymore. I am able to feel my grief and sadness fully, and feel my love for Leroy much more deeply, and for this I am so, very grateful. 

I still have sadness and grief, I still have bad days and times when I feel really down.  I now recognise this as a part of my life, and I let it come. It’s all part of my love for Leroy.

I now have a lot more compassion, both for myself and for others. This has been an amazing gift. Through this, I have found my voice.

I remember my Nana who is now 90, saying to me about Leroy that “It’s meant to be”. Rather than finding this comment insensitive and upsetting, which I would have in the past, I told her that I didn’t find her comment helpful. She said “Oh, ok, well what do you find helpful?” I told her that talking about Leroy, and remembering our special times with him, did help.

Through these kinds of conversations, Leroy continues to bring love connection to so many.

Peter and I went through many spaces trying to figure out if we wanted to have another child after Leroy. First it was flat out no, then maybe, then yes, then no, then a final yes.  Almost 3 years after Leroy died, we welcomed our third baby, Ruben into our family.  A healthy baby boy.

Ruben, like all our boys has brought so much love into our lives.  Of course we can never bring Leroy back, but I feel my 3 boys are eternally connected to one another, and to me, and Ruben brings love from Leroy to us all.

And how about this amazing place - the Royal Children’s Hospital.  There is so much energy and love here.

A world-class hospital with dedicated, compassionate, big-hearted people who care so much about their patients and families.  

I’d like to thank all the wonderful people who make this place tick. The cooks, the cleaners, the technicians who service the equipment, the researchers, the social workers, art and music therapists, pharmacists, psychologists, social workers, midwives, nurses, doctors, surgeons, specialists, and all the incredible people who organise and administer everything behind the scenes. 

It takes a very special kind of person to work on the front lines, on the wards.  Thank you to all those people who willingly give a good portion of their life in service of others.

The last thing I want to do is acknowledge all of you.

For many bereaved parents, this hospital has many memories, some of them very difficult memories, and I acknowledge the courage it takes to be here today.

Whenever I am around other bereaved parents, I am struck by your incredible grace, humility, strength and courage.  To endure what you have, and to keep going, is extraordinary.

You are all heroes in my eyes.

Thank you for the privilege of sharing my story with you.