Working through it – a forever journey

Posted in Connecting with Angel Child by Robyna

This past weekend has been charged with emotion. I was given the very great privilege of speaking at a grief conference about Xavier. As someone who has always enjoyed public speaking, I relish those opportunities. They mean I can talk about my son with people who truly want to listen. They mean that Xavier’s name is known by more people. They give me an opportunity to mother my son in a very public way. Not only did I speak about Xavier, his death and the wake of it, but my mother and a dear friend spoke. I knew that their words would affect me much more than speaking my own truth. And they did. The cumulative effect of three different perspectives on one loss was very powerful and there certainly wasn’t a dry eye in the room. Yet, I still found it cathartic. The tears that flowed were healing ones and the gifts that both my friend and mother gave me through their words and their grief, profound. Those in attendance thanked me for my words and called me “brave” and “amazing”. I didn’t really feel I was either of those things – but rather just mothering my baby in the best way I know how.

The following day at the same conference I was part of a panel talking about first responses and responders to child death. There were paramedics, policemen, counsellors and myself, representing parents. I didn’t really prepare myself for this panel – I thought I would be fine. Talking about Xavier brings me more joy than tears, even when talking about the hard stuff. So I was surprised to find myself feeling flat and confused when that session ended. The paramedics were beautiful souls, world weary and the kinds of eyes you could immediately tell had seen too much. Even when they used their clinical terms, that medical mask, you could sense a sadness. The police officers were kind and spoke measured words. They talked about the heart breaking balance between being an advocate for the child, assisting the parents, assisting the coroner and doing it all within limited resources. They too had a certain heaviness about them. I had painted them in my mind as professionals that donned hardened hearts to protect them against the realities of their jobs, but the horror of child loss is sharp enough to pierce even that armour. They were human and raw and real. And I wasn’t quite prepared for that.

I was able to ask the paramedics are few questions. I have always wondered about those that were able to help us. Whether they went home knowing what Xavier’s fate would be. Or whether they clung to the chance of a miracle. Whether they shook off that early morning or whether it stayed with them. The paramedics at the conference explained that they rarely find out what happens after they attend a scene – that they rarely get that closure. That all too often one critical situation rolls into another, before they barely have time to process it. I gave each of the men a hug, a thank you in lieu of being able to pass that gratitude to those present that morning.

The paramedics also said that they didn’t trade in false hope. They only attempted resuscitation if they thought there was a chance of life returning. To know that Xavier was that close, that the gap between him staying and leaving so very narrow startled me anew. I know how SIDS works. I know that there have been babies that have died by SIDS literally in their mother’s arms. That the mechanism that stops working in SIDS babies cannot be revived through resuscitation. Yet at the same time, it had me wondering yet again, what if I had woken just ten minutes earlier. For the most part I have given up on what ifs, they are not helpful on this journey. But with this new bit of information, they snuck back in again.

When I find myself in the darker places of grief, the places I thought I had left long ago, I set time aside and I do something creative for Xavier. I remind myself that he has his story, I have mine and we have our relationship. And I do something to nurture that relationship. I created a text butterfly for him, and I will share how I did that in separate post.

Grief can take us by surprise, but as with all things within this journey, we can choose what we do when she does so. Love and Light.

16Feb2014

The things that stay the same – Mothering after loss

Posted in Connecting with Angel Child, Parenting after loss by Robyna

Motherhood is a strong bond. Not even death can sever it. And there are certain things about mothering a child no longer here that are exactly the same as mothering a living child. I wanted to write a list of them. To provide comfort to those also missing their children. To let those that surround the grieving know how important this most invisible of motherhood remains.

1. You love them a little more each day
The first moment I held Isaac, I could not imagine my heart could accommodate any more love. I was bursting with it. But each day went on and each day I woke up surprised to find I loved him a little more. It was the same with Xavier and now with Elijah. But loving them a little more daily does not cease with death. Every morning after Xavier left, I loved him more than the day before. In particularly that first year, where the mounting love seems exponential is its growth. That love that begins when you learn you are pregnant, expands with each scan, each kick, swells when you hold them for the first time, grows each time you even think of them. It does not go away. I do not miss him less each day, I miss him more. I do not love him less each day, I love him more. And this is perhaps the crux of why it takes a very long time to arrive in a place of peace after losing a child. The passing days do not take away the hurt. For the first few months, they only added to it. Just as I do his brothers, every day I love Xavier a little more.

2. You worry about them
I worry about Xavier. Worry if he is happy. Worry where he is. In the early days of grief I felt that if I just knew where he was, just knew he was okay, the pain would be so much more bearable. I worried about burying him. That he would be alone at nights. I worried about leaving him in the hands of the funeral home. Worried that they would treat him tenderly. I worry that others won’t treat his memory as gently as I do. As he has grown, and my understanding of him has changed, I worry less. But, just as I do with his brothers, I will always worry about him.

3. Sibling rivalry and jealousy still exist
Whenever I make Xavier something, Isaac wants me to make him one too. The Christmas after Xavier died, I made him a stocking and Isaac immediately wanted one. If I buy a toy or ornament for Xavier’s grave, Isaac wants one for himself. There are some things that bind brothers, no matter how far apart they reside. They will always be brothers, and they will always demand the fair share of my attention.

4. You get mother guilt
I often feel that I am not a perfect mother to Isaac and Elijah. I sometimes watch other parents and I am concerned that I am not measuring up. I have guilt about certain decisions. I watch other bereaved parents and they way they honour their children. Through amazing creativity. Through inspirational fund-raising. Through words and deeds. And I wonder if I am doing enough. But how can we ever feel we are enough for our children? I will never reach it for Isaac or Elijah. And I won’t for Xavier. Because I want to be perfect for them, and I am imperfect.

5. You are proud of them
Every parent is proud of their children. I so love watching new parents with their firstborn. The absolute pride is tangible. They are walking a well-trod path but they act like the first people to discover how amazing starting a family is. I know we did. Parents want to share photos, tell stories about their children. It is no different when your child lives somewhere you cannot go. I share photos of a beautiful, living Xavier. But there are those whose only photos of their precious ones are after they had passed. How privileged I feel when I get to see those photos and share not in that parent’s grief, but in that parent’s pride. I feel proud of what Xavier has accomplished through his journey. Each of my boys will do amazing things that will make my heart soar with pride – the two on earth and the one in heaven.

I parent each of my boys according to who they are and what they need. But I will always be mother to each and love them to eternity.

3Feb2014

The endless pursuit of Happiness

Posted in Uncategorized by Robyna

I am not sure when it happened, but somehow we have arrived at a place in time where happiness has become our birth right and everyone else’s expectation. Joy is the perceived equilibrium. Happiness is not a high on a scale of human emotions, happiness is apparently where our feelings should sit the majority of the time. Countries are measured by the happiness of their inhabitants, we are constantly admonished try to be happy and if we aren’t wearing our gleeful faces, someone is likely to ask you what’s wrong.

I am a positive person. I would say that I am genuinely happy for a good percentage of the time. But through grief, my own and watching others, I have learned how violently this particular society reacts against emotions other than happiness. No matter what has occurred, not matter how tragically a life has been turned on it’s head, happiness remains the goal to aspire to. You are allowed a brief pause in sadness but dwelling there is self-pitying behaviour. The expectation is to “buck up”, “count your blessings” and “try to be happy”.

Trying to “jolly” some-one when they are in grief is not helpful. Some-one very close to a person who is grieving died. It’s okay for them to be completely devastated by that. It’s okay for that devastation to reach into weeks, months and years. It’s okay for them not to be happy. We seem terrified that “not happy” is a quick and slippery slide into the realms of deep depression and even suicide. We seem so very scared of emotions that we are taught are not positive. Yet we are all human. We are all capable of huge ranges of emotion. Our hearts have great reach, perhaps even more so when they are broken.

We need to be as comfortable with tears as we are with laughter. We need to accept there are situations that we cannot “fix” but that company and silence would go some way to mending. Sometimes we need to be okay with not okay. It goes against the grain of our modern world, but we need to make room for sadness.

30Jan2014

Brave new worlds – the first day of school

Posted in Parenting after loss by Robyna

Today was a milestone day – my eldest son starting school. No hiding from the fact that he is growing up and entering into worlds I cannot follow. Already a bundle of emotions I find hard to fathom. Energy, frustration, eagerness, imagination, wildness, joy and longing bundled tightly into a body too small to handle the range. Coiled.

This beautiful baby of mine, growing up and away. Yesterday, I held him helpless in my arms. Tonight, I watch him sleep. His still full cheek, the deep breath of sleep, there are echoes of the baby. He will wake tomorrow morning, full of boundless energy and enthusiasm. Impatient to live every moment. And in that bounce, is the boy. He will tell me things that he has learned. He will unknowingly utter wise things and I will see the promise of the man.

He is on the cusp of a new chapter. Entering into realms that I can still remember of my own childhood. Not just vague and dream like snippets – but years and events I can recall with clarity. I am no longer a “new” mum. My little one is getting older and I with him. There is such promise ahead but I look back with a tinge of sadness. I will no longer be his world. There will come a time when I occupy just a small part of it. But he will always have my whole heart.

I get to watch him grow. Watch him discover passions. Watch him succeed. Watch him struggle. Be there when he soars as he falls in love and there to catch him if he falls. And this day feels like the beginning of all of that.

So many mums this week will be feeling similarly as they bravely hug their boys’ and girls’ goodbye and leave the school gates feeling a little empty. And then there are those whose arms have been empty for a long time. And for whom the fresh new school year heralds a new ache. Those that should have been sending their little ones into the school yard for the first time but instead feel a new pang. For their little ones, frozen in time. Forever tiny. Wishing their tears were falling because their child was growing up.

Today, I was brave and did not cry. Tears threatened but I beat them back for my son. But on the day Xavier would have started school, I will not have to fein bravery for the sake of him. And the tears will fall for a milestone that never was.

I am reminded, both for Xavier, and today for Isaac, of Khalil Gibran’s poem

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.
You may give them your love but not your thoughts.
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.
You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

So as my eldest lets go of my hand and flies, I will forever strive to be the stable bow.

31Dec2013

The New Year

Posted in Grief over child loss by Robyna

Last year I felt conflicted as the year changed. I had not expected it. I knew Christmas was going to be difficult and prepared myself but I was surprised by the gamut of emotions the change of year would bring. To say goodbye to 2012 was to say goodbye to the only year Xavier had ever known. The step into a new year felt like leaving him behind – a huge gulf of time ellipsed in a single moment. Throughout my grief I have been impatient for the next phase to start, for the pain to lessen and for healing – in that regard I was glad to leave the hurt of 2012 behind. Yet I could not bid the year “good riddance”. As much as it was the year that stole my son, it was also the year that gave him to me. It was a year that saw friends engaged and married. A year where other little ones with kinder futures were welcomed. There was still so much joy in that year. Newly pregnant, I was eager for the months to pass and the safe delivery of Xavier’s younger sibling. I was keen for the making of happier memories.
But even all of that felt like leaving Xavier behind and placing trust in an uncertain future. Last year, I stood on a precipice, took a deep breath and leapt.
One of the things I struggled with after Xavier’s death was that my happiest memories were behind me. That true joy would never visit me again. A dear and wise friend has said this about grief – the heart is the only vessel where the capacity for fullness is not diminished by its brokenness. And so it is. A broken heart can hold untold joy and love. I fact, a broken heart is an expanded heart. So if I feel utter joy, it is not because my heart is mended but rather its broken form holds more than it ever did before.
Now we stand on the precipice of another new year. A year I look forward to with hope in my heart and love in my soul. A year that will bring joy, and no doubt some tears. A year to laugh with my family, to kiss my boys and to hold them close. A year to learn, to embrace life and to spend time with those I treasure. Another year on this blessed earth. How wonderful. What a gift.

26Dec2013

When the hurting eases

Posted in Grief over child loss by Robyna

There have been times in my grief that I have been jealous of the way others are grieving. People who could forget for that split second before they fully woke that their lives had been shattered. That little tiny window of innocent bliss. That has never been my experience. I would wake, every morning, fully aware of Xavier’s absence. My dreams bereft of his presence. There was no sharp blow each morning, there was a dull and continuing ache. And then one morning I awoke, maybe two or three months after his death, and I felt nothing. I probed at memories, like a child wiggling a tooth, coaxing the tears and the emotion back. Nothing. Not even an emptiness. Just a complete absence of emotion. I was perplexed. Was this it? Was I “over” my grief? Was I “better”? It was not until a few weeks later, after the tide of grief had pulled me back in, that I realised this was my mind giving my heart a rest. Grief is incredibly exhausting, hard, tiring work. It leaves little energy for other things and eventually, my body claimed the rest it so craved. At the time, I couldn’t conceive how my intense grief had simply disappeared. And it made me uncomfortable. The tie to my son severed. Yet another thing taken from me – another silent thief in the night. I found myself jealous of those who were clearly in the dark depths of pain. I knew how bitterly that hurt, but at least it kept my son close. I was not okay with this version of okay.

Now, I find myself in an entirely different phase of my relationship with Xavier. And, surprisingly, it is okay. It’s never going to be what I want it to be – but that goes without saying. But, I can genuinely smile and laugh, without guilt. Increasingly, I feel Xavier in the love and laughter of my family. He has become one with that love – woven tightly into its fabric. Christmas Day, my husband and I visited Xavier’s grave. I waited for the inevitable rush of emotion. Being thrown back to the day we buried him. Wanting to hurl myself into the earth to be with my son. That emotion didn’t come. And as I stood, tinsel around tiny graves glistening in the sunshine, relentless heat searing the little christmas trees, I realised, Xavier was no longer there. Xavier was back with my family. He was around the Christmas tree. He was the joy in the season. He was the hope in shiny, little eyes. He was the promise in chubby little hands tearing at wrapping paper.

Is this healing? Is this the resolution of grief? Can I close a chapter or wrap everything up with a big, shiny bow? I think it is healing – I think it is a changing relationship with my son and I think that’s a positive thing. But I worry – how is that perceived? Do people think I am okay with the fact my son died? Do people think that I am stoic and brave? I am okay. But I am not sure if I am okay with being okay. I am not okay with how being okay might be perceived.

We wade through grief, waiting desperately for the day when peace will be restored to our hearts. But are we ever prepared to give up what might lead to that peace?

Little Xavier, as I think of you this Christmas season, I feel your comfort around our family. I try not to think of you, eighteen months old, tumbling around the Christmas tree. For that is not you. That memory belongs to someone else’s child and motherhood. To think of you that way is to invite pain. Instead, I catch glimpses of you in the twinkling lights, in the shining eyes of your brothers, in the embraces of family and friends and the very essence of Christmas that I once thought was lost forever. Merry Christmas little one.

25Nov2013

All the perfect souls

Posted in Uncategorized by Robyna

The question has perplexed theologians, philosophers and the grieving alike since time immemorial – why do the innocent die? The question sits alongside “what is the purpose of suffering?” and “why do bad things happen to good people?” Ageless questions without easy answers. Xavier, and those I know through Xavier, are not the only people in my life to have left the world too soon. A small handful of beautiful young souls within my orbit have been taken from this earth in the past two years. People that surely karma would grace with long lives. Sometimes it seems that Billy Joel’s, “Only the good die young”, is particularly prophetic. Is there any sense to be made of this apparent waste? Some profound lesson? Some divine reason? Or do we spend too much time, trying to find gold where only misery lies? Why do we try to find reason in the unexplainable? Why do we yearn for order when the world throws us into chaos? Why must we look for the silver lining in every cloud? Why does our Western obsession with looking for the good in everything extend into the darkest of situations?

Perhaps sometimes it’s okay just to realise something is crap without redemption. Just utter, terrible, heart-breaking, soul-destroying crap. When Xavier died, the words I found most comforting were – “it’s just not fair.” No attempt to explain what happened. No pretence around reasons and better places. Just an acknowledgement that very often life is terribly, terribly, terribly cruel.

Of course, I have tried to look for answers. I have spent the better part of 18 months turning the puzzle of Xavier’s death around and around in my head – a rubik’s cube that will never be solved. There are a number of ways that I can look at his death that give me a kind of comfort. That he is an old soul. That he had little to learn and much to teach. That his death had no reason but his life held a grand purpose. That he is still here, in different ways. Snatches at comfort – things that would bear no close scrutiny but that do not need to.

The thing that made the most sense to me came to me late one night. You may think me crazy, but I often have imagined conversations with Xavier in the still of the night. Whether it’s Xavier’s soul speaking to me, or some deeper part of me that still belongs to him, it doesn’t matter. I asked whether Xavier could see the future and give me comfort in what he saw. The reply came that whilst living life, we have an incredibly narrow vision. We see only what is immediately around us. Xavier’s view was as if from an aeroplane – an expanded view of the landscape below, creating a larger and different picture from what we experience on the ground of life. A more holistic viewpoint, removed from the minutiae of the moment.

Perhaps when we reach the other side, we will be able to see a richer and more complete tapestry and suddenly our questions about why the perfect souls leave us, will be answered by the complete vision in front of us.

21Nov2013

Making the rainbow connection

Posted in Parenting after loss by Robyna

I am not the first loss mother to be consumed and confused by the place of a rainbow baby in her family. This beautiful gift that I have paid the highest of prices for. I think the crux is the confusion is this: you learn things in grief – precious, beautiful things. We sometimes call them the gifts of grief. But every angel mother I know would gladly give each and every one of those gifts back to hold their baby again. There is nothing you can gain in loss that tips the balance in favour of saying good-bye. And then another child comes into your life. Suddenly, there is something borne of loss that is so precious that it gives you pause to reconsider.

No one is going to knock on my door and offer my Xavier back in exchange for Elijah. I am never going to have to make that choice. And yet there is still guilt surrounding the presence of Elijah at the expense of Xavier’s absence. My love for Elijah will always be tinged with a longing for Xavier. His milestones, more so than Isaac’s, paired with wondering if Xavier’s would have looked the same, been met at the same time. And as I am granted longer and longer with Elijah, my feelings for him intensify and evolve in a way that they never had time to with Xavier.

In the weeks following Elijah’s birth I would look at him and could not fathom how I survived the loss of Xavier. Each feeling was intensified in those weeks – the joy, the love, the fear and the grief. Even now, I think I could not survive if we lost Elijah. And that thought feels traitorous – could I survive the loss of one child over another? Am I, in some way, choosing one son? Loving him more?

Of course, it would be possible to fall pregnant four months after Xavier was born had he lived. Just terribly, terribly unlikely. I was breast-feeding and two children had always been our plan. Whilst now I look at photos and think of Xavier as missing, in a way that’s disingenuous – in reality it was never the way our family would look.

And yet, how often do our families end up the way we planned? Those that had sworn to no children may end up with a family of six. How many third children are born in the hopes they might be a different gender to the first two? Accidents occur frequently. Do the mothers in those families agonise over the children they had not initially planned on and wonder at their place in the family? Or do they not even pause to think it over – just accept the beautiful gifts bestowed on them and the fluid shapes of family over time?

When I think about the shape of my family – my boys – this is what I picture: Two boys, one much littler than the other, their faces turned towards the sunshine. Rays of light gently settling around them, and both of them with an understanding that this light belongs to their middle brother.

6Nov2013

The hearts that surround us – educating those that support the bereaved

Posted in Grief over child loss, Helping those in grief by Robyna

Within the support groups I am a part of, whether in person or online, a common topic of discussion is insensitive comments and actions made by loved ones. It seems every bereaved parent has at least one story (most many, many, many more) about being deeply hurt by the words, actions or inactions of someone they hold dear.

But just as there is no definitive guide book on how to handle your own grief, there is no ‘Support 101’ for friends and family to rely on. The unfortunate fact is that it often falls to the grieving to instruct those around them on what they need. An almost impossible task, particularly in the earlier days when you don’t know what you need, aside from the one thing no one can give – your baby back.

Whilst it seems momentously unfair, it is often a choice between losing friendships or being open and honest about the support needed. Personally, I could not fathom further losses. But I know for others, certain friendships had to be let go.

So how do you educate those around you?

As callous as it sounds, work out who is worth the effort. For me, it was all of my friends but if you have one of those people in your life who only ever take, it might be time to let them go. You have nothing left to give.
Consider telling people about the positive things that remind you of your child. Through telling people about seeing Xavier in the sunshine, they often refer to “Xavier’s sunshine” and will send me pictures of beautiful sunsets and sunrises. It’s a way to share him and have people remember him that feels joyous. It makes people feel comfortable about sharing in his memory and helps them realise that as much as his death makes me sad, his life makes me happy.
Have a forgiving heart. People are going to say hurtful things they don’t even realise are hurtful. Try to see the intention rather than focussing on the content. If the intention seems pure – explain to them why what they said or did caused you pain. Do it sooner rather than later. There is no point in holding onto hurt and leaving your friend completely unaware of the pain they unintentionally inflicted. If you think the intention was hurtful, see point 1.
Share articles and blogs that resonate with you with your support network. Not only are you educating your friends and family, you often feel validated – a sense of – “see, other people who have lost a child feel exactly the same”. It helps the non-bereaved to understand that what we imagine “healthy” grief to look like and what the reality is are often very different.
Realise that the person who has stayed silent may have nearly rung a dozen times, had a half-written email filled with good intentions, verged on texting and then second-guessed themselves and thought their words would bring more pain than relief. It’s not an excuse – if that person is dear to you they need to know that silence is often the most painful of reactions. But don’t assume their silence immediately means they don’t care or aren’t thinking of you. The opposite is the most likely scenario.
If it’s your baby’s birthday or anniversary and you want people to remember with you, let them know that in advance. For Xavier’s anniversary, I had ribbons made with his name on them and asked people to wear them. Others have asked loved ones to reflect on how their child has touched them. If you’d rather be left alone, let people know that too. But please don’t get to the end of the day and feel wretched that nobody remembered your baby. Some people may have forgotten, others may have remembered and been unsure what to do and so opted for silence as the safest bet, particularly if you haven’t mentioned the day in a public way. With the exception of close family, I don’t expect others to have Xavier’s dates engraved on their heart as I do.
Lead by example. People are so scared of doing the wrong thing – they will look to you as an example of how you want your baby remembered. If you talk often about your child, they will hopefully also feel comfortable to do so. Let them know you like talking about your baby (if you do).
As a bereaved parent, you sometimes ended up supporting others through their grief over your child. This isn’t okay. This is pretty much the best advice I have ever read relating to support – Ring Theory. Share it.
If the thought of explaining how you want to be supported to all your friends and family seems overwhelmingly daunting, enlist the help of your dearest and closest friend or family member. Get them to help you educate those around you. This also works well when returning to the workforce. Having a trusted colleague talk to your team mates on your behalf can help avoid awkward conversations. If you still feel quite lost and unsupported, you can ask friends and family to talk to SIDS and kids. Their counselling service extends to all of those touched by child loss. A dear friend often rang SIDS and kids in the early days as she wanted to learn ways to support me as best she could. I am so grateful for that.
Unless a person has lost a child, they will never fully appreciate the depth and breadth of your grief. That’s okay – we want as few people as possible in this “club”. However, it’s important to connect with people who do know that pain and can offer a different kind of support. Whether online or in person, child loss support groups are incredibly important and will relieve some of the pressure on you and your friends and family.

There is nothing fair about losing a child. It’s not fair that this burden of education falls on the people who already have such a heavy load. But the reality is, it does and the way we carry that load has a significant impact on how well supported we will be during this journey. By assuming people know what to do, or seething without saying anything when they try and fail, we break our fractured selves just a little bit more. The best advice I received when we said good-bye to Xavier was to “go gently”. Go gently on our own hearts, and the hearts that surround us. Go gently.

24Oct2013

The spaces that define you

Posted in Grief over child loss, Parenting after loss by Robyna

“Is he your first?” “How many children do you have?” “Does he have any brothers or sisters?”. Innocuous questions. Until you are grieving mother. Then they become the questions you dread. The questions that can leave you gasping, even when you have a well rehearsed answer.

“He is my third son,” I answer with confidence and hope and pray no more questions follow. But of course they do. Because the natural thing to ask is how old. To comment on the chaos three little boys would inevitably bring. And then I have to share Xavier’s story. And suddenly a superficial exchange has been thrown somewhere entirely different. Somewhere uncomfortable. They make apologies. I make apologies. I have shifted in their eyes. I have exposed a tender wound. I have become to object of pity.

Before losing Xavier and learning a great deal about myself, I used to think I had come to a place in my life where I was no longer jealous. In my early twenties, as I watched friend after friend get engaged, jealousy consumed me in an entirely unhealthy way. I believed that by the time I was thirty, I had let that go. I watched dear friends build the houses of their dreams and I was so happy for them and surprised at my own lack of envy. After Xavier’s death I learned some things about who I truly was. I was not jealous, until they had something that I truly wanted and didn’t have – two living sons. I did not tend towards jealousy, but I didn’t mind one bit if people were jealous of me. In fact, I believe I courted it. And to be object of the flip-side of that – to have people pity me. To have people think “Thank God that wasn’t me”, was foreign and uncomfortable. I am still not comfortable with it. And, at least in my mind, it is a natural reaction to Xavier’s story.

When someone learns for the first time that we lost a son to SIDS, I am thrown right back to the beginning again. As they absorb what I have said, I watch their face change. They have not accompanied me in the past year’s journey. They don’t know where I am in this grief. It has hit them anew, and I am taken back there with them.

I am proud to be Xavier’s mother. I always will be. I am happy to be defined as his mother. I sometimes struggle to be defined as his grieving mother. It feels like a terrible betrayal, but I am yearning for spaces in my life where I am not recognised as a grieving mother. Spaces where I can pretend, even for a short while, that I am just as everyone else is. People ask me how many children, and I find I am now being more evasive – “I have a four year old at home”.

But this presents me with a challenge. Am I betraying a greater truth by not always proudly owning the mourning mamma persona? Do I add to the taboo around talking about child loss? Am I blindly perpetuating the myth that we are all happy, shiny people? So often when I do open up about Xavier, people tell me something they are struggling with. That window of opportunity would not exist without my first revealing my greatest hurt.

What is my responsibility to Xavier? To the community of grieving hearts? To the wider community? To my own soul and what I need? How much do I always need to reveal? I am still working through these questions.

But this I know – even as mother to living children, I need spaces aside from the mummy persona. Spaces to create, to think, to be. Recuperative space where I am nothing more or less than the bare bones version of myself. And perhaps, this is what I yearn for when I say I need space away from being a grieving mother.