The Gift of Time

The Precious Gift of TimeI remember holding Xavier’s tiny hand in my own. Willing his little fingers to curl around mine.  Of course, they didn’t. The rise and fall of his chest was the only testament to life and it was artifice. A mirage. But he was there – his tiny little body – being kept alive by machines. I could touch him. I could let tears fall over him. I could kiss him. And as we said our final goodbyes, I could hold him. I sang to him as his last breath left his body. I kissed him softly as I said “he’s gone.”

Our time together had contracted suddenly and violently.  I thought we would have a lifetime to share, but in the end we had 13 perfectly normal days and one deeply sad, deeply profound, deeply beautiful one. I am so grateful for that last day.

A day when friends and family gathered around our son and bid him farewell as he passed from this world into the next.

A friend of mine recently became a mother.  She gave birth to a beautiful baby boy.  She imagined a lifetime with him. Her time with her son contracted when he was born without breath. She didn’t have years with her son. To kiss him. To hold him. To tell him all the things a mother tells her child. Instead, her and her partner had to try and convey the love of a lifetime within a few short, raw hours.

It is hard to describe how precious that time with your child is. Knowing that this beautiful, perfect little being will not be a physical part of your life going forward. Knowing that this time is all the time that you will get. Wondering how you will survive. Willing yourself to remember each fingernail. Inhaling your baby’s scent. Trying to fight through the fog and shock of grief so that the memories will be indelible. Wanting your friends and family to see your little one – for them to understand his perfection, his importance, his profound impact on your life.

There was a time when a baby born without breath would be whisked away, never laid in their mother’s arms. A time when women were urged to forget and have another baby. Time has taught us that this approach does not heal, that it has left deep wounds and that a mother never, ever, ever forgets. Mothers and fathers need time with their babies. Babies are just as precious when they are born still. And it perhaps it is even more important to spend that time, to form that bond, when there will be no future opportunity to do so.

Many hospitals have invested in cuddle cots – a specialised cooing system which allows the parents to spend more time with their precious child.  The system allows babies who have passed way to remain with their families so that they are not required to be cooled in mortuary environment. Cuddle cots enable family members to travel to visit and meet the baby, siblings to meet one another and even gives parents the option of taking their baby home to lay in their own cot, in their own room or travel in their own car seat. It’s about giving parents choices, and reassuring them that they can spend as much time as they like with their child, without the fear of the baby needing to be cooled in a traditional mortuary.

Not all hospitals have them, or enough of them. In honour of her son, my friend is raising funds to buy such a cot for the Greenslopes hospital. It will give other families the gift of time, when time has been cruelly shortened.


 Please consider donating to her cause here:
PLA Cuddle Cot for Gabriel


***

The friends, the friends who understand and why I need both

Beautiful ornaments created by Kirstie for all the families.

Beautiful ornaments created by Kirstie for all the families.

On Sunday I attended the SIDS and Kids Christmas memorial service. It was my third. It is always a beautiful and poignant event. There are tear-stained faces and new little babies bringing hope – finally filling arms that had been empty too long. There are brave speeches and burgeoning bellies, as new little rainbows dance into the world. The names of children gone too soon are read and seen and acknowledged. And as I read and heard them, I recognised so many of them – the children I now view as Xavier’s friends.

At the service I saw some friends I hadn’t seen in a while. Friends that had supported me through my grief, and friends I had made when they joined the most heart-breaking of clubs. My need for support has changed, as has theirs. Our lives have taken off in millions of different directions. And that’s okay. When we come back together, we are still connected, joined by the bonds of loss and children remembered.

It is important this community. Not just in the bleak aftermath of loss where it is a necessary life-line, but as a continuing family that supports each other. Why do we need each other? Why is it so important to be supported not only by those that already love us, but by those who know our pain? There are some things that only another bereaved person understands. There are some perspectives that are only changed by loss.

When we say good-bye to Xavier, there were some people who knew exactly what to say, exactly how to support us. Those people had experience their own heart-breaking losses. They were the friends who understood.

A friend says, “he was beautiful”.  A friend who understands says “he is beautiful”.

A friend says, “he will always be in your heart”. A friend who understands says “I will keep him in my heart, beside my loved one gone too soon”.

A friend says, “you will always remember him”. A friend who understands says, “I will always remember him”.

A friend says, “you will always be his mother”. A friend who understand says, “you continue to be a good mother to your son gone too soon”.

A friend says, “it wasn’t your fault – you need to stop blaming yourself”.  A friend who understands says “I am sorry you are in the horrible dark place of guilt. It is part of this grief. I am here for you.”

Newly pregnant with my baby’s sibling, a friend sees my terror and says “this baby will be fine”. A friend who understands says, “I can’t make promises but always remember every baby has a different story and a different life to live.”

A friend says “it is time to rejoin the world”.  A friend who understands says, “do you want me to stay with you when you are in the darker places?”

A friend is sometimes cautious about speaking his name, worried that they may make me cry.  A friend who understands speaks his name often, accepts tears as a gift and knows that his name is a kind of music that makes me smile.

A friend waits for the grief to end. A friend who understands knows that the grief stretches as long as the love.

A friend says “I cannot begin to imagine your pain”. A friend who understands says “I know how terrible, how painful this is. The light will return and I am here for you until it does”.

I need the friends, innocent of loss, to bring lightness, love and joy into my world. I need the friends who understand, for they are the ones that can nurse my broken heart, who know how to collect the fractured pieces and have practiced carefully piecing them back together.

Grief and Choices

Before I became intimately acquainted with grief, I presumed it followed a linear path. A difficult first period, which would gradually ease until reminders of a loved one lost eventually brought smiles rather than tears. Reaching that point would mean grief was over.

Perhaps some grief does work like that. My grief doesn’t. I don’t know anyone who has lost a child who identifies with that pattern of grief. They do identify with people expecting that pattern of grief from them. They do talk of friends and family urging them to “get over it”. There does seem to be a time period when deep grief is allowed and after that point the hard and dark grief is deemed “unhealthy”.   Grief stays with a person, changes them, as uncomfortable as that might be. Exercising “tough love” and demanding they try harder to return the person they once were will not help.

There are those whose grief is complicated, who cannot move on from the darkness, where joy has completely left their lives and they are unable to find a reason to continue. It’s not a position anyone wants to be in. Those in the grip of complicated grief need support and understanding.

Sometimes you make choices about your grief, and sometimes your grief makes choices for you. There have been days when I have quite purposely avoided grief – I have pushed thoughts of Xavier aside and I have taken myself away from support groups. I have needed the rest. There have been other days when I have chosen to stay with my grief. To understand it better and to immerse myself in my son gone too soon. These days are harder but necessary. These are the brave days that help me heal. You have to go through grief – there are no shortcuts. Then there are the days when I don’t get to choose. When grief over takes me and hijacks my chosen path. In the days coming into Xavier’s second birthday, I was paralysed. I couldn’t do simple tasks. And I was so angry about it. So devastated to be back in a place I thought I had long left. I did not choose it – this regression. It was not what I wanted. I was not indulging myself or holding tight to grief. Sometimes grief just takes over.

In the dark and terrifying months after Xavier died I desperately wanted to feel better. If I could have made that choice, I would have. But grief isn’t a choice. Grief is the searing pain that follows when someone you love is ripped away. After time, it becomes a scar. Not deep and angry and weeping as it was at first, but a scar nonetheless. Sometimes the scar flares. It’s not a scar I chose to bear, nor is it a scar that I can control. At times, I can hide it. Sometimes, it is so faint that I can almost believe it has gone away. But it will never truly heal.

Bereaved parents can be protective of their grief, holding fast to it as a tie to their child. And that is completely understandable. I do not think grief is my only tie to Xavier. I do not think that deeper love is expressed through darker grief. Although, I worry that perception is there – that if my grief lightens, others might think the love I have for my son has lessened. Grief and love are linked, but I do not believe that they are an echo of each other. My grief has lessened, whilst my love has intensified. I have no choice over that love. What parent does? The unconditional, completely wondrous, absorbing love that takes a hold of your heart when you become a parent. And just as that love has a life of its own, so does its darker cousin, grief.

If you are struggling with grief, be gentle with yourself. If a loved one is in the grip of grief, be gentle with them. There are times when you simply just cannot choose.

Lies, Damn Lies and Karma

Life was very simple when I was teenager. Things followed a linear path. Whilst  I was riddled with teenaged angst, unsure of myself and my place in the world, I was at least sure of cause and effect. If you worked hard, you would achieve your dreams. If you were kind, kindness would be bestowed on you. If you did the right thing and made the right choices, then things would turn out just fine. Good things happened to good people. I believed in karma.


I don’t believe in karma anymore.


As a group, the girls I went to school with have been beset by more tragedy than seems fair. They are not my stories to tell, so I will not list the challenges and tragedies here, but there have been enormous losses sustained amongst a concentrated group.

When I think back to the fresh faces of my senior year, I wonder what we would have thought had we known the future. In what now seems like cruel irony, we had nicknamed ourselves “immortalised”.  Time has taught us we are neither immortal nor immune.

When we first lost Xavier, I was sure I was being punished for something. I searched my heart and my soul for answers. What had I done to deserve this? And when my friends experienced their own personal hells, my first thought was “they don’t deserve this”. Despite life continually teaching us differently, it is hard not to assume cause and effect. That tragedy would somehow be fairer if it was only dealt to those who lived carelessly. That some cosmic system of checks and balances exists. It doesn’t. Sometimes terrible things happen to good people. Sometimes terrible things happen to people who appear to have had their fair share of tragedy. As you get older, it seems the terrible things mount up.

It is an eternal question – why bad things happen to good people? The theoretical and theological answers to that question are cold comfort when you are the person. When that question is not asked in some esoteric context, but wailed, pleading for answers. It is hard to accept that bad things happen so that others can be grateful for their blessings, or to give us an opportunity to lean on God, or because the world is imperfect. It easier to believe in chaos when you are in the midst of it. That there is no sense, no rhyme and no reason. That fate is random and cruel. When we lost Xavier, the inelegant words “it’s so unfair and it sucks” brought so much more comfort than pretty stories about God working in mysterious ways and things happening for a reason. Life does not owe any of us fairness. And quite often, she does not grant it.

We live in our world that believes in justice and blame. That seeks to attribute a terrible occurrence to someone’s misdeeds and punish them for it. But when there is no one to blame, what can you do? Shake your fist at God? Invite blame into places it does not belong? When we lost Xavier and they told us there were no answers, I blamed myself.  There was no-one and nothing left to blame. But some-one had to be responsible and I took up the mantle. Like so many before me, laying under blankets of guilt. We are so sure of this karmic circle – that one thing leads to another that it is difficult to accept there is no link. That some terrible things happen without there being anyone to blame.

I don’t believe in karma.  But I still believe in kindness. Not because it will be returned, but because it is a better way to live and it makes the hard things easier to bear. I still believe in hard work. Not because it will necessarily be rewarded, but because it is satisfying in and of itself. I still believe that there is good in the world – but it is not bestowed on the good people all of the time. The most we can do is hold fast to the love that surrounds us and give it away freely. In the midst of tragedy, it is kindness that offers some sweet relief and it is often tragedy that opens the flood gates to love. Karma may not exist, but kindness abounds.

 

When Headlines Hurt

There is a headline dominating the news and social media today. A newborn baby boy abandoned by his mother. Left alone in a drain for days on end. Agains all odds, surviving. As the mother of a baby boy in heaven, my reaction to these kinds of stories is visceral – my feelings over-take any rational reaction.

My first thought is a selfish one. How did this little baby survive? How did he spend days in a drain, in the heat without help and love and milk and yet my little boy could not survive something as ordinary as a nap? Why are some chosen to live, against all the odds, and other to die, against all the odds? In moments of acceptance and peace, I understand that each of us is given a life frame in which to live. Some are short. Some are long. We each live our lives within that span. The little boy who lived has more living to do. Xavier had a different path to travel. But it is difficult to believe. It is difficult to understand. And it is far removed from fair.

And those thoughts lead into the next: Why was that little boy saved when his mother abandoned him? How did that little child, with no mother holding his hand and begging him to survive, make it? Why was that mother blessed with a child when so many are not? So many that desperately yearn with all their being to be mothers. Families that would embrace and love and protect their children above all else. Why are they denied the gift of children? And yet it is given to someone who treats it so carelessly. I do not know the circumstances of the mother who left her baby to die in a drain. I do not know what demons plague her or what the state of her mental health is. I do not know what would possess anyone to act as she had. But I do know so many who would treasure the gift of a living child, if only it were offered to them. Perhaps this mother who acted so horrifically deserves sympathy and understanding. I find it hard to give.

A little while ago another headline caught my attention. A baby had died by SIDS, whilst sharing the bed with parents who had smoked and drunk alcohol. SIDS deaths do not often get reported in the news. Still births do not generally garner media attention. The singular heart breaking tragedy of child loss is not enough to make news. There needs to be another element to the heart-ache. A scandal or celebrity. Unsafe behaviour or something that flies in the face of all reason – like leaving a child in a drain. And so the face of child loss in the media is generally marred. There is often at least the hint of blame, which is carried like a banner by those who comment and share the article. The commentators scale their lofty heights and pass judgement about things they know little about. In the case of the baby that died by SIDS, the fact that the cause of death was deemed SIDS indicates that the baby had an underlying abnormality. The parents did not follow the safe sleeping guidelines, and perhaps the child may have lived if they did. It is entirely possible that the child would still have succumbed to SIDS if they had. This is the mystery and tragedy of SIDS. But because it was reported in the context of the parent’s being at fault, it gives the false impression that it can be avoided entirely. This reporting of child loss allows people to place distance between their experience and the things that might happen to them and the horror of losing a child. There is an inaccurate comfort granted. And those that have lost a child know it is a lie – losing your child can happen to anyone.

I hope the little boy that lived is okay. I hope that he finds a loving family who will en-circle him with love. I hope that the angels continue to be kinder to him than they were to my son.

Christmas when one is missing: Ideas to get through it

IMG_8571As we come into the Christmas season, my thoughts turn to those who are navigating their first Christmas after loss.

The first Christmas with out Xavier was a challenge. I spent a great deal of time making things for him, thinking about him and desperately, desperately missing him. I put on a brave face and tried to make Christmas as magical as I could for my living son, but a large part of me spent Christmas in a different place. The second Christmas was different, and whilst the ache was still there, it was no longer raw and weeping. I had Xavier’s little brother in my arms and a new sense of hope and purpose.

IMG_8577This year, with baby Elijah old enough to join in a little more, I am really looking forward to Christmas.  Life has taken off again for us.  I still think of Xavier all the time, but no longer with a deep sense of yearning. He is simply a part of our lives in the form we know him best now: a soul, a guiding light, the sunshine’s rays, the one we thank when little things go our way, the butterflies that fly too close to be anyone else.

I wanted to put together a list of Christmas ideas both for bereaved families, and those that support them. I hope that they may offer some comfort.

Christmas ideas for the bereaved:

  • Every year I either make or create (or both) a christmas ornament for Xavier.  It is a beautiful way to keep him close and to remember him at Christmas time.
  • I hang a stocking for Xavier each year.IMG_3761
  • When the boys write their lists to Santa, I write a letter to Xavier and place it in his stocking.
  • I have baubles with each of my boys names on them.  It is one of the only places I can see them all together and it makes me smile.
  • Whether it’s your first or fifteenth Christmas, be gentle with yourself. I think as bereaved parents we expect so much from ourselves. Just be gentle with your expectations – it is a difficult time of year.
  • Every year I attend a service dedicated to child loss – it is a beautiful Christmas tradition.
  • Each year I have bought a gift for a child the same age as Xavier and placed it underneath the Kmart wishing tree.
  • I haven’t as of yet, but one year I intend to make a special memory box in Xavier’s name to give to another bereaved family who are just starting their journey.
  • The simple act of going into a church, lighting a candle and saying a prayer allows me to centre myself and find some peace in a season that can be anything but.
  • You might find yourself smiling at a department store santa or humming along to a carol.   Equally, those things could leave you in devastated tears. Either reaction is okay. Allow yourself happiness and allow yourself  sadness. Be kind to yourself.

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Christmas ideas for the friends and family supporting the bereaved:

  • Both sides of our family remember Xavier at Christmas time.  There are baubles for him on my parent’s tree and my sister in law’s tree.  It means so much to see him remembered and treasured.IMG_4176
  • If you want to, buy a little present for or in the name of the child no longer here. A donation to their favourite charity would be a lovely gesture.
  • Be sensitive and be forgiving – it is a really hard time of year.
  • Particularly, if it’s their first Christmas, give them space. It may feel like they aren’t really engaging in Christmas. They may not want to participate in family traditions. They may not want to celebrate Christmas at all. Allow them the time and space they need and try not feel hurt.
  • Attend a service with them
  • Visit their child’s grave or special place and leave something – not out of obligation to your family member or friend but because you miss their baby too.
  • Address Christmas cards to the whole family, including the ones gone too soon.

Wishing you peace this season.

Permission to Grieve the Other Things

FlowersToday I said good-bye.  Good-bye to the workplace I have spent fourteen years within.

 

It is the right time. The right thing for me now.  Time to spread my wings and try new things and hopefully fly. I am going to set up my own consultancy business.  In truth, it’s something that I have been considering for some time. If  Xavier had lived, it may be a step that I would have taken earlier. It is exciting and terrifying and wonderful.  And I have been focussing on those emotions.

But it is also sad. Sad to be leaving a place I know so well, a place that has shaped me, the people who I consider friends. People who showed incredible love and support when we said goodbye to Xavier.  People I have, quite literally, grown up with.  I have not given myself time or permission to dwell on the sadness.

When there are two sides to a coin, I always choose to spend time with the positive.  But there is something to grieve.  Sadness amidst the excitement. And, despite the fact that no sadness will ever compare to the loss of my son, I need let myself feel it. I am sad to leave behind this part of my life.  As I hugged those I count as friends, not just colleagues, there was melancholy.  Of course I would be back to visit, but as a visitor. I would no longer be a part of the team.

Sometimes it feels as though surviving the loss of my son introduced a new contract on how to live life.  That I have no right to be sad about anything other than Xavier. That I must focus on the positive at all times.  That grief, not directly tied to him, is ridiculous and insignificant. But that’s not how life works. There will be bittersweet experiences in my future.  There will be sadnesses, that will pall compared to the loss of my son, but will be sad nonetheless.  And I need to give myself the permission to feel it.

Poetry in Grief Thursday – The Broken People

Screen Shot 2014-10-23 at 2.35.06 pm

Every Thursday I am sharing a poem I have written for Xavier.

Today I wanted to share a poem that was published in the beautiful book Three Minus One.

I was thrilled and humbled to be a part of this collection of stories, essays and poems about the loss of a child.  You can buy the book here.

This poem is about the change that occurs when you lose a child.  The person you become. The fragility and the strength that co-exist.


The Broken People

I am one of the broken people

The people who are hollow

The people made of glass

The people made of sorrow

 

You might not know it

Think me the same as you

But look a little closer

You’ll see straight through

 

I am weightless, groundless

I am battered, I am broken

I am bruised, I am tired

I am words left unspoken

 

 I am acting when I’m smiling

I am pretending even now

Appearing to be living

When I have forgotten how

 

I go through the motions

I wake up every day

Do the things that need doing

Say what I am supposed to say

 

But this vessel is broken, empty

It is cracked beyond repair

And sometimes when you see me

I have vanished into air

 

I am living on the outer

Each breath hangs by a thread

I am half way between the living

I am half way to the dead

 

One day I’ll find my feet

Feel the earth and remain

But even when I make it there

I’ll never be the same

 

Because now I am so fragile

Heart shattered on the floor

And ‘though I am made of glass now

I am somehow stronger than before

The Most Terrible Decision: Cremation or Burial

Image Credit Robyna MayWarning: This article talks about the cremation and burial of infants. It is intended for those that are either faced with this terrible decision or are wondering whether the decision they have made is the right one. It is not my intention to offend anybody, but I realise these are sensitive subjects.

After Xavier died it felt like I had fallen down Alice in Wonderland’s rabbit hole. Everything was wrong and out of place and I was faced with one horrific decision after another. Would we consent to an autopsy on our baby? What colour should his coffin be? Would I speak at his funeral? But of all the decisions, the one that I found the most vexed was whether to bury or cremate our darling child.

In the wake of his death, I was given information from SIDS and Kids. Numerous booklets with information on grieving, on support and on infant funerals. These little booklets offered advice and quotes from parents who had been through what we were living. One of those parents revealed that they had decided to bury their child because they wanted a place to visit. That resonated with me and we decided to bury Xavier. It is a decision that I have revisited, wondered about and never been entirely sure whether I made the right one. I wanted a place that was his, but then I didn’t want him alone at night. After all his little body went through, I could not commit him to the fire but I now wonder if the earth is any kinder.

If you have come to this place because this is a decision that you are facing: how to say goodbye to your precious child, then I extend my love and my deep-felt sadness. I wish I could take away your pain. I wish I could deliver your child back into your arms. But all I can offer is my experience and the hope it may help you.

If this is a decision you are making or a decision you are regretting, then know this:  There is no right decision. When the choice is between fire and earth rather than holding your baby close, there is no decision that will feel right.

These are the reasons I chose to bury Xavier:

  • I wanted a place to visit that was separate and his alone.
  • I could not face the thought of cremation.
  • I wanted a place that would be his forever – a small patch of earth that would bear his name for all eternity.
  • Others in my family have been buried in the same cemetery as Xavier.
  • I wanted a place where others could visit Xavier.

Often when I visit Xavier’s grave, there will be small ornaments, toys or cards left by his tombstone. Evidence that he is still a part of the lives of my family and friends.  It is a joy to see these small things.  There is a sense of tradition and ritual that accompanies visiting his grave on his birthday, Christmas, Mother’s Day and Father’s day. On the flip-side, I often feel guilty that I do not visit him as often as I used to. There is a sense of duty to that small patch of earth that I feel I don’t always live up to.

These are the reasons that others I know chose cremation:

  • They want their baby in their home.
  • It is important to them to hold ashes in a special urn, or piece of jewellery.
  • They wanted to scatter ashes in places sacred and special.
  • They could not face the thought of their baby alone in the earth.
  • They wanted to be able to take their baby with them, should they move house or overseas.

If you choose burial, here are some ways to honour your baby in your home:

  • You can request some of the sand used at the burial and place this in a special urn or piece of jewellery. If you buried your child some time ago and crave this, you can use some of the soil that covers their gravesite.
  • I personally believe that the essence of Xavier does not reside in his remains. His love, his warmth and his presence is felt in the sunshine, heard in the sound of his brothers’ laughter and seen in the love our family shows each other. There are places in our home that are dedicated to him. I feel him in those places more-so than his gravesite. You can create spaces in your home where you feel your baby.

If you choose cremation, here are some ways to honour your baby outside your home:

  • You can request to have a plaque erected at a cemetery in honour of your baby.
  • You can choose any sacred space that allows you to feel your child’s spirit and dedicate it as “their place”.  Perhaps a beach or forest. You might visit that place on special dates.
  • You can talk to your local council about building a public garden, special seat or some other wonderful thing in your child’s memory.

Explaining cremation and burial to young children is difficult.  Carly Marie has a beautiful way to describe cremation to children.   My eldest son struggles to understand why Xavier’s body is buried deep within the ground when we talk about him being in heaven and all around us.  This is what I tell him:

Each of us has both a body and a soul.  Our bodies provide a home for our souls.  Our soul is who we are, what makes you YOU – every soul is unique. Our bodies are not made to last forever.  Sometimes they get sick.  They get old.  Some people have to lose their bodies earlier than others.  This is what happened to Xavier. But our souls do not get sick and they last forever. It is harder to understand a soul without a body, but it doesn’t mean it doesn’t exist. Xavier’s body went into the ground, but his soul is all around us and a part of our family for always.

1 in 4 – Why it Doesn’t Compute

This month is infant and pregnancy loss awareness month.

Every October I see this:

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I am going to be completely honest. It doesn’t sit right with me. I lost my baby to SIDS. That was a 1 in a 1,000 chance.

Yes, I am a part of the 1 in 4 statistics but it is a very, very thin slice of the graph Xavier falls into. His death was not common (Thank God). What we went through does not happen to a quarter of the Australian population.

And so I don’t feel comfortable announcing I am 1 in 4. I know the aim of the campaign is to start people talking about the taboo subjects of miscarriage, stillbirth and infant loss. I know it’s about solidarity. I know there are no ladders in loss. I know that every one of the children remembered this month, and every month, is precious and loved – no matter their age or development. I know all of this and I support it, but I recoil when Xavier’s death is placed on the same shelf as miscarriage. I feel like a traitor even writing that. Within this community of loss we support each other equally and fully. I feel privileged to know women as mothers when their motherhood often goes unacknowledged. It is a gift to know their children through their love. I know they have their own struggles.

And so do I. And they are different. As much as I acknowledge that there is no comparison in grief, no more than, no less than there is also no the same as.

The loss of my son to SIDS is not the same as a miscarriage. It is not the same as losing a child to stillbirth. It is not the same as losing an infant to accident or illness. It is different. And that needs to be acknowledged. Each of those losses is unique and has its own pain. Not more than. Not less than. But apart.

That uniqueness feels lost when I become 1 in 4.

It was only a week or two after Xavier died. My very good friend, who has had more than her fair share of miscarriage heartache, and I were talking. I was trying to put Xaviers death into perspective. I said “perhaps there is no difference, perhaps his death is like a miscarriage”. I was struggling with my loss and honoring her loss now that I had a different perspective and understanding. She gently put her hand on my mine. She looked me in the eye and said “it’s very different.” That was a gift. The understanding that this pain held a different weight, that it was a different shape.

It is an understanding that doesn’t always occur within the loss community. Every one holds tightly to the recognition of their motherhood. I understand why. It is often the only place that motherhood is recognised. There is a fear that acknowledging the differences in loss would lead to a reduction in the recognition of motherhood. But we are all different. We mother differently. Our losses occurred differently. Our journeys take different paths. We share so much in common, and we hold that up. But I think it has to be okay to talk about the differences too.

This pregnancy and awareness month, I am 1 in 4.

I am 1 in 1,000.

And I am the only mother to my son.