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


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The things that stay the same – Mothering after loss

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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.

Welcome to the world little rainbows

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All over the world, new parents are gazing with untold love, adoration and awe at their newborn children.   Of these, a small percentage are filled with just a little more wonder, just a touch more disbelief, slightly more  gratitude that their sweet little baby has arrived and done so safely.   They are the ones who do not sleep, but watch over each breath.  The ones who marvel at the sound of little cries, not quite believing they are real.   The ones that have to pinch themselves that so much joy has finally come into their lives.   When a midwife assures them that babies are less fragile than they look, they are the ones that regard that advice with suspicion.  Experience has taught them differently.

They are not first time parents but the baby they held first was without breath.  And at painful times, without  recognition. Midwives, doctors and friends might refer to them as first time parents, as new mums and dads.  Not necessarily because they are ignoring the baby who came before – the baby that didn’t take a breath or only snatched the smallest amount of life. But because our language has no word for a parent that loses a child, let alone to describe a parent who has lost a child and then welcomed a living baby into the world.    These mothers and fathers have had to parent in the hardest of situations.  They have had to find ways to love and connect with a child that they cannot see.   They have had to nurse aching, empty arms.  They have had to find strength they never knew possible.  They have had to fight for their motherhood, for their fatherhood.  They have kept memories alive.  Their hearts have been broken and yet swelled to accommodate the most amazing of loves.

And now these parents face a new and alien set of challenges.  How to bathe this little one.  How often to feed. How to soothe cries. How to tell if he’s too hot, is she’s too cold.  But there are other things they already know.   That the love for your child is all consuming.  That you love them a little more dearly each day.  That being a mother or father is such an awesome and beautiful responsibility.   They know the full precious weight of their baby. They know every breath is a treasure.  And they know that this little one has a big brother or sister, looking over them. Keeping them safe.  They know that their family looks a little different from others, but their first child or children will always have a place within it.  They have loved and loved and  loved.    And now they get to love a baby that demonstrably loves them back.

With much love to all the parents who have recently welcomed rainbow* babies into their families, but particularly those who are welcoming a child after losing their first.

*A rainbow baby is the term used by the loss community to describe a child conceived after loss. It refers to the hopeful rainbow that appears after a storm.  The storm does not refer to the child that did not live. But rather the very dark place that inevitably follows after loss. Nor does a rainbow signify the end of grief.  A rainbow baby brings hope and light into a shattered family, whilst they still miss and grieve for the child they hold in their hearts rather than their arms.  

Ladders in Loss

There is an unwritten ladder of grief that bereaved parents seem expected to adhere to.  An expectation by society that a miscarriage hurts less than a still birth, a still birth less than a neonatal loss,  a younger child less than an older one.   And the length of time allowed for grieving contracts the younger your child was at the time of loss.

The truth is, that ladder is a lie.  There is no “more than” or “less than” in grief – each story holds its own tragic weight.  A weight that defies categorisation or comparison.  For as much as there is no “less than” there is also no “the same as”.  My grief over Xavier is different from the mother who lost her baby at birth, different from the father who lost his son to an accident at three years old,  different from the parents who learned at their thirteen week scan that their baby had no heartbeat, indeed, different from another  family who lost their son at two weeks old to SIDS.    But it is not “more than” and it is not “less than”.  We are different but bound by the common devastation of holding a child in our heart, rather than in our arms.

There is no finite amount of grief that needs to be shared amongst the bereaved.    Each journey is different and each journey is valid.   How someone else grieves their child is their business – the intensity of their sadness does not somehow invalidate my grief over Xavier.  There is no competition. There are definitely no prizes.

When we first lost Xavier at just two weeks old to SIDS, I wondered whether it would have been easier if  he had born still.  Would that have hurt less?  It is an impossible question.  I am so grateful for the two weeks we spent with our middle son.  I would never wish it away.  I would rather have loved and lost him, than to have never had him at all.   Every parent treasures the time they get to spend with their child.  And yet those that didn’t get to spend any time with their living baby outside the womb are expected to hurt less.  It defies logic. A baby is a baby to their parents the happy moment they find out they are pregnant.  Hopes and dreams for that child often formed before that.  Every baby is a miracle.  Whether you grieve the memories you made or the memories you never got to make, that grief is real and cannot be contained within imaginary boundaries.   Parents need to grieve, without judgement and without ladders.