Xavier’s story begins with a holiday in Fiji. I asked my husband whether I should be avoiding alcohol and coffee – after all, there was a small chance we could be pregnant. He dismissed the idea with a scoff. And yet there I was, not a week later, holding a positive pregnancy test with a huge smile. I hadn’t really been monitoring anything, and we had a dating scan to learn that our second little child was already 8 weeks old, growing fast inside of me.
The next months flew by: work, scans, appointments and looking after Isaac, my three year old. Enjoying the company of my pregnant friends as we compared bellies and the large joys and small annoyances that come with pregnancy. I felt strong and relaxed.
On the 24th June, my waters broke at home and knowing that Isaac had been born quickly, we rushed to the hospital. I was laughing and talking to my husband and sister as the contractions became more intense. Eventually, I had to call out for a birthing suite and little Xavier was born ten minutes later, welcomed into the world by his mother, father and aunt. He came into the world so quickly. I didn’t know that he would leave it two weeks later in the same way.
We were enjoying our time as a family, welcoming our littlest man. Some people say that your first child makes you parents and your second makes you a family. That’s how I felt with Xavier. We felt complete.
Xavier was strong and fed well and regularly. Although early, he appeared healthy. We settled into a comfortable routine, enjoying the relaxed confidence that comes with parenting the second time around.
Then our world shattered. At 5:00am on Friday the 6th July I found Xavier without breath. I had just fed him at 4:30am. His body was warm but he had no breath, no heartbeat. I screamed and N threw me the phone to call the ambulance. I remember I had to repeat our address – why is she asking me again? Why is she wasting time? Panic rose, the full enormity of the situation started to dawn on me and I started to scream again. The voice on the end of the phone attempted to calm me down. She relayed instructions for CPR and I repeated them to N who was trying to breathe life back into our son. Both of us sobbing, both of us had only one word – “Please”. The ambulance arrived ten minutes later. It felt like ten hours. It felt like eternity. The paramedics worked on Xavier, moving him into the dining room to allow them height for their machines. I remember one of them asking if it was even possible to use the paddles on a baby so small. “Do it” I remember sobbing. “Do whatever. Bring him back.” Isaac came out of his room and I took him back to bed. We sat there and I held him and I prayed. It had been a long time since a prayer had passed my lips, but I begged and begged. N stayed with paramedics, relaying information back to me. Each time I would look at him hopefully and he would shake his head. Then they had a heartbeat. A heartbeat! They rushed him to hospital in the ambulance and we followed. A heartbeat I kept repeating to myself. Miracles happen I told N. We were both trying to convince ourselves. We arrived at the ER and they tried to stabilise Xavier. N stayed with him whilst I stayed with Isaac in a waiting room. The nurse came to ask what I would like – she meant a cup of tea of coffee. I said my baby back healthy please. My sister, sister in law and mother in law arrived to take care of Isaac. To take care of us.
Eventually they moved Xavier to the PICU. Eventually they stablised him to the point we could come in, touch him and talk to him. We still thought there was hope – there was still a tiny fraction of a chance. I asked them if I could express a little milk and give it to him via the IV. They did it. They must have known it would make no difference. But that something of me and my love coursed through him whilst the medicines kept him alive was important.
We were assigned a social worker. We knew that wasn’t a good sign.
Then came the terrible little room. The doctor that explained with a heavy heart and sad eyes that there was nothing to be done. Xavier would not survive without machines. He may not even survive with the machines. Even if a miracle occurred, and the odds were slender, he would have limited brain functionality – he would be severely impaired. Do you understand? our social worker asked. We nodded – we had understood that morning when we had found him. We had already understood that our son had been robbed of life. That we had been robbed of our son. We held onto each other – gripping each other like the life-rafts we were to one another. “We knew” I sobbed into N’s chest.
They moved Xavier into a room that allowed us to touch him, to talk to him, to kiss him, to watch expectantly and hopefully as each vital sign was checked. We were told there was no chance but parts of us waited for that miracle. When they finally allowed us to hold him in our arms, his tiny body full of tubes and apparatus, our attempts to comfort him awkward, I believed that the beat of my heart would call him back. That love would succeed where science could not.
We called family and friends. Those that would be the last to say good-bye to our son started to gather. They called a priest. We baptised Xavier. Those closest to us gathered in that little room. A circle formed with Xavier in the middle of it. I read a prayer, we tried to sing and each person came up one by one to lay a good-bye kiss on Xavier’s still-perfect cheek.
Then one by one everyone left, allowing us to spend the night with our son. We slept lightly, taking turns to look over Xavier. To kiss him – to hold him. To tell him everything we thought we had a lifetime to relay. The machines would dip and waver, but he would pull through each time. The morning came and we had to make a decision. He had been brave for us so long. We would be brave for him. We asked for him to be removed from the machines. He was placed in our arms, without tubes, and for several breaths he was our little Xavier again. There was no miracle but for the fact that he had allowed us so much time to say good-bye. We kissed his sweet head and said farewell. We played “Beautiful Beautiful Boy” and I thought I had my phone on repeat. It was on shuffle and the song that played as he took his final breaths was “I won’t give up on us”. The first of many gifts from Xavier as he passed from this life into the next.
The days that followed are a blur. There was shock, disbelief and love. I moved through the motions, grateful that breathing is automatic. I made an order of service for him – it had to be perfect. We chose his burial plot – it had to be perfect. I thought about how I was going to grieve – it had to be perfect. The funeral was perfect and so many people commented on it’s beauty. It was the last very public thing I did for my darling boy.
Gradually I found others that were walking this path, who were sad to have me join them but glad that I had found them. And we started to figure out how to live without one of our children. I started to learn that there was no perfect grief. That I had to find my own way and that would be the right thing for me.
Xavier is and always will be my son. Our relationship is different now – he teaches me more than I think I ever would have taught him. But he belongs to me still and the ache in my heart will always belong to him.
Over time, we began to feel Xavier in the sunshine, all around us. This poem, written a few weeks after he left us, explains why –
Sunshine
When you took your last breath
And to the stars you flew
I thought I’d see the brightest star
And always think of you
But when we first went outside
The sun was fierce and bright
I thought the stars are too small
I feel you in this light
I asked others to remember
When they saw the brightest star
To think of you and send a kiss
No matter where they are
But so many felt your presence
In the suns dappled rays
In the colours of sunrise
The sun setting over days
And I feel your presence
When Isaac’s playing in the sun
I see your rays touching him
I see my boys having fun
When I told your aunty
I feel you when the sky is lightest
She told me the sun is still a star
It happens to be the brightest
When I said to a dear friend
Why we saw you in the sun
She said, perhaps its not the biggest
But it is the closest one
And so I feel you in its warmth
Each day I see you yet again
And ever since we said goodbye
There has not been a drop of rain
chasinghissunshine.com 
I couldn’t find the words then and I still can’t now…but you did, and they are beautiful, and moving, and so powerful. I bawled my eyes out. I am so sorry that awful day happened but am glad you shared it with us.
Thanks Michelle – I had only shared this in loss groups before, but I feel ready for people to know Xavier’s story now. xox.
Hi. I just found your blog. It is beautiful. Like you, we lost our 3rd son Owen last July. Same thing too. They were able to get his heart started but nothing else worked. I didn’t have the strength to say goodbye, I could barely hold him I was so distraught. Your story brings back so much pain I know I try and push off. Thanks for your beautiful writing. We called Owen our Sunshine too so your saying is so true that you are chasing his sunshine. Hugs to you and your family.
Carla, I am so sorry – no parent should ever have to out-live their child and there is a very specific pain involved in losing a baby. I hope that as time goes on you are finding some healing. I am glad we both feel our boys in the sunshine’s rays. Go gently.
Dear, (I dont even know your name…!)
I got your blogaddress from my friend debbie.
Thank you so much for sharing your story! It is exactly mine. The breathing stop, helping him our serves, the lady on the phone helping us, waiting for hours (3minutes…) for the ambulance to come, the doctors saying that his brain was really to much damaged to live with… The only difference is that our son was 6 months old and fought for 6 weeks before it became really 100% clear that there really was no more hope left. It is now 4 weeks that he’s gone and Im searching for people who actually met their baby and who are grieving positively. It helps reading your story, Thank you!!
Love, Marijke
Dearest Marijke, my name is Robyna. I am so sorry you are travelling this terribly difficult road. I do try very hard to grieve as positively as I can. Particularly early on, I felt that I had to be as gracious as possible for my son. That wasn’t always possible and retrospect, that’s okay too. I wish you love and light and please be gentle with your beautiful self.
My baby girl Madi left us suddenly in December 2013. She was 2.5 years old. We had 3 days to say goodbye before switching off the machines. The void she has left in our hearts and lives is immeasurable.
I too have found it difficult to find people who understand the loss and who don’t feel complete hopelessness and dispair. I see I have two choices: I could fall in a heap and hide away, or I can go on, putting my energy into a positive place. I am building a memorial playground in Madi’s honour. The thought of Madi’s memory bringing joy to other children through play, especially her sister and brother, is beautiful.
I will never stop missing Madi. I imagine my grief will continue, perhaps in different forms. Knowing there are others who understand, who have “made it”, who feel similar, brings some comfort.
Thank you both for speaking out. I love the phrase “chasing sunshine”.
I am so sorry that your Madi is no longer in your arms but it gladdens my heart that you still feel her joy. I agree that we can’t change the past, but we have some control over how we choose to deal with what’s happened. Her playground sounds beautiful. Go gently.
I found your blog via https://babylossmama.wordpress.com/
I am so glad i found your story just as i am trying to get ready to parent again after losing our first baby at 28 days old. Although he did not die from SIDS (his cause of death is still unclear), we too lived through the time to hope for a miracle, the horrible talk in a small room, and the goodbyes in a hospital room, so i recognized myself in your words… I look forward to reading more of your posts.
Many thoughts to you and Xavier.
So sorry that you too know the pain of losing a child. I hope that your new baby brings you healing and hope. The sleepless nights and the worry are a given.
You see your son in the light, I see my daughter in the snow and the wind. It is a painful, beautiful feeling. I lost my one year old to SIDS in December. A broken heart can still grow, that’s what we are learning, isn’t it?
I have been looking for inspiration from mamas who’ve survived this loss and mothered again. I yearn for the acts of motherhood, but am fearful that I have lost my confidence and trust. Thank you for writing that you are continuing to be brave. I needed to hear it.
I am so sorry that you are having to figure out how to live without one of your precious children. A broken heart still feels, still bleeds, still loves, still beats. Much love.
❤
Robyna, I have just found this blog. This post. Tears are streaming down my face. I cannot imagine this journey for you. And what a powerful beautiful thing you are doing in sharing it. I read this after just hitting publish on a post about feeling trapped by breastfeeding, by the total reliance of little people. I almost feel ashamed after reading this. My heart breaks. I am so lucky. Thank you for sharing Xaviers story.
Please don’t feel that way. My perspective may have changed slightly, but brining up kids is still hard work. There are days when I have definitely felt trapped by breast feeding, despite being incredibly grateful for my baby. Thanks so much for letting a little bit of Xavier into your heart.
Oh Robyna….I have no words you haven’t already heard, not sentiment that hasn’t been expressed but my gosh I am sending you some love. I can’t even begin to imagine the strength it took to write this post, to relive it on paper (screen) as I’m sure you’ve relived it a thousand million times in your mind.
I am having a really hard time right now parenting my little people but this just throws me on my arse & reminds me how damn lucky I am. I’ve always thought of you as a super supportive, sunshine-y type person & now knowing that you carry such a huge amount of grief & loss in your heart but still can be that person is inspiring. Big, big love to you xx
Thank you Reannon, you made me cry a little (good tears). It’s funny, even with an altered perspective, there are still days when I really struggle with my little people too. Inevitable part of motherhood perhaps? I do try to be a sunshine-y sort xxx
Robyna, how I sobbed through your story, and Xavier’s story. I wish no one had to suffer seeing their own heart break.
I am writing a book at the moment, and the working title is She Sells Sunshine. It is about a mother’s grief for her lost (missing) 3 year old daughter, and how she lives her life with that pain and uncertainty. I read your other blog today and mentioned a new grief in my life that I am partly expressing in writing my book, and that grief is for the 3 year old that my son with autism will never be, the boy that I expected when I held him in my arms. He is not that boy, yet still I hold him in my arms, and he is so precious and beautiful in a different way. I must put that grief away now and get on with being his mother.
Love to you on your journey x
I have a very dear friend whose daughter has Downs Syndrome and she had to work through a similar sort of grief – so grateful for the girl she has, but not life as it was imagined. If you ever want to chat about grief (even in the context of your book), I am just a PM away. I think it’s important that we discuss it more openly than we do as a community at the moment.
Robyna, I cried and cried after reading this. My heart aches for you. I am a Paramedic and I completely understand the Paramedics asking each other if they can use the paddles on a baby so small… I promise you, you son won’t be forgotten. I promise those Paramedics will remember his name, they may even remember his birthdate. In my job I see grief from the other side. Thank you so much for sharing Xavier’s story. You are an amazing women. xo
Oh thank you Krystal – that means a lot to me. I actually spoke at a grief management conference aimed at those in the emergency services. I talked about how much I appreciated what the paramedics did and they talked about the fact that they seldom receive closure on the cases they work on. I gave the speaker a big hug and asked him to pass it on. Such difficult, necessary work. Such special people to do it.
Hello Robyna,
How beautifully you write about your family, your three boys and your man. Tomorrow night is a special service at St Mary’s Church, North Sydney held every year on the first Friday before Christmas. It is non denominational but spiritual and beautiful, a service of Remembrance, Consolation and Hope. I am a Social Worker and with my dear friend and colleague Deb De Wilde we run a support group and a special antennal group for parents whose babies and children have died. I would love to share some of your poems and posts on our Facebook page Pregnancy After Loss Groups PALs. Is that OK?Tomorrow night I will think our you and your Xavier as the Cafe at the Gates of Salvation sing and we remember.
Hello Belinda – please feel free to use anything I have written here to support and comfort those who have lost their precious babies. I shared my story in a public space so that others might feel less alone. xxx