The Narrow

Posted in Parenting after loss by Robyna

Have you ever noticed how often we use words associated with death and dying when we describe how babies sleep? Dead asleep, dead to the world, sleeping like an angel, out like a light, in another place, dead weight, gone, out to it, passed out. People sometimes say these things when describing Elijah sleeping. Then they realise and look at me with momentary horror as they register the meaning of their words. It’s okay. It doesn’t worry me too much. But there is a reason we use those descriptors. The space between a baby sleeping and a baby never waking is narrow. Narrow in a way that terrifies me.

When Elijah is deeply asleep, his body still and his breathing almost undectably shallow, I panic. I place my hand against his stomach until I feel sure that he is okay. Even though I know what a baby without breath looks like, I am still terrified. That moment that severs them from life is instant in most SIDS cases. One moment of this earth and the next beyond it. I imagine two lines branching out from single one. Two lines travelling in very different directions, but at their origin, separated by only the slightest of degrees. When Elijah is deeply asleep, it’s not a stretch to imagine him taking the darker of those two paths.

I used to say “babies bounce” and be part of the confident parenting brigade that espoused the deceptive toughness of newborns. It’s conventional parental wisdom – you are afraid of breaking your firstborn and treat them like china. You realise that they are tougher than they seem and relax on your second. And it’s true – babies survive so much. It’s hard to hear tales of babies surviving starvation, abuse, tragic accidents and medical difficulties when your own baby couldn’t even survive a nap. I love a miracle story as much as the next person, but there will always be that lingering thought “where was my miracle?” Why was Xavier the antithesis of a miracle? He had a 999 in 1000 chance of living and he did not.

When my first son, Isaac, was born I expected to feel an immense love. I had read enough to know that would happen. I was surprised by the ferocity of that love. That feeling that I would not only take a bullet for my son, but that I would have no problem pulling the trigger if I needed to, to protect him. That there was absolutely nothing I would not do for him. A lioness with her cub. When Xavier was stolen by SIDS, I had no chance to fight for Xavier. We were given a day in hospital, which is so much more than so many SIDS families, but it was immediately clear that this was a chance to say goodbye. There was to be no fight. There was no rollercoaster of “will he make it or not”. There was just a little life snuffed out. He had no chance to change his world whilst he was a part of it. He was here and then no longer here. The space between those realities too narrow. No space for me to squeeze between and save my son. Two weeks. A sliver of time, too short to seem of consequence. And yet his impact is indelible. He changed lives. Mostly for the better, but now fear is written on my heart.

The chances of Elijah dying are narrow. So close to zero that it would seem impossible. But Xavier fell into that narrow crack, beyond all reason and sense.
As Elijah gets older, the smiles and gurgles more frequent, he feels more of this earth. It feels as though his place is permanent. And every time he wakes again in the morning, the gap between him and the unthinkable narrows.

3Oct2013

What TO say to the grieving

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

When we lost Xavier, we were incredibly lucky with the support we received. Very few people said “the wrong thing”. And whilst I know most of our friends and family were lost for words, we felt their support, their prayers and their love. This is not everyone’s experience after losing a child.

There are plenty of excellent blog posts about what not to say to a grieving parent. I wanted to talk about why these things are hurtful and some alternatives. Grief is different for every single person, but at the same time there are commonalities about what gives comfort and what does not. If you cannot find the right words, that’s okay – just say that rather than relying on trite platitudes. The sweetest sound will always be my baby’s name.

At least you have your living child/ren.
A bereaved parent is highly aware of their blessings – it may be the only thing they are holding onto. They don’t need you to point them out. They did not gain those living children as part of this loss and those children are also grieving their sibling. In addition, grief is time consuming and tiring work – it can make looking after other children very difficult. The slack that would be given to a mother of a newborn baby is not afforded to a newly bereaved mother, even though she needs it just as much.
Instead say “I am sure that your living child/ren are a huge comfort right now but I can also see that you need to spend time with your baby and your grief. Can I help you out by baby sitting?”

You can have more children.
Firstly, you don’t know this nor do you know what the parents have decided regarding have more children. Secondly, it’s actually irrelevant. This grief is about their child that has passed away – children are not replaceable or interchangeable.
Instead say “I am so very sorry that (say their baby’s name) couldn’t stay longer. I will always remember him/her with you.”

It could have been worse – your husband / wife /older child might have died.
You play head games in grief. You think of people you would have rather lost than your baby. Don’t second guess what the result of that horrible game might have been. Besides, this comment is never going to be comforting to a person who is now suddenly terrified that loved ones can be snatched away without cause or reason.
Instead say “I can’t understand why this happened to you. It’s just not fair.”

There are in a better place / this happened for a reason.
This might be your belief. But I can tell you now, the only person that gives comfort to is the person that hasn’t lost the child. The best place for any child to be is in their parent’s arms and there is never a good reason for a child to die. This just isn’t helpful and I think we only say it because someone taught us to say it when someone dies. Perhaps it has it’s place when an elderly person dies, but not an infant.
Instead say “I don’t know how the world works and why such terrible things happen. I wish your child was still with you and I will remember them always.”

It was only a miscarriage / thank goodness you lost them now, rather than when they were older.
There is no “only” in child loss. Every person deals with things very differently and there is no right or wrong. There are no measures in child-loss grief, there are just different circumstances and the same aching longing to hold our babies. If you have children, ask yourself – would you prefer to lose them now or later on? It is an impossible question and trying to answer it gives no comfort.
Instead say “I am so very sorry for your loss. I am here if you need me.”

I couldn’t get out of bed in the morning / I couldn’t be as strong as you are / The Lord only sends you as much as you can survive – you must be so strong.
The truth is, if this happened to you, you would be getting out of the bed in the morning. You would be trying to make things work. Your family and friends would still need you. Your heart and head would have stopped and life would keep moving around you. Whilst it is probably not what you mean, when this is said to a grieving parent they can hear the intimation that the speaker loves their baby more – that the loss of their baby would render them incapable and therefore their love must be greater. Strength comes to you because you need it, not because it existed prior to loss. Extra pain is not allotted to those with extra strength.
Instead say “The days must be really difficult and I want to help you. When can I bring dinner around for you?”

My sister/friend/mother/aunt lost her baby, and she didn’t carry on this way. You need to get over it.
Every grief journey is different. Some are intensely private and you actually wouldn’t have a clue what their heart really looks like. Others need to express their pain publicly. Some have never been allowed to express their grief. The pain of losing a child doesn’t go away, it dims with time but often flares up. A bereaved parent will need to talk about their child. Will have bad days, even years after loss. A grieving parent learns where their grief is accepted and where it is not. You need to decided which kind of friend you want to be – the one that can live with the discomfort and be there, or the one that would prefer your grieving friend wear a mask for your benefit. Think about why you want them to “get over it”. Do you just miss the person that they used to be or are you genuinely concerned for your friend’s emotional wellbeing? If you are concerned about their wellbeing, then you need be there for them. Whatever that might look like.
Instead say “I know that you will miss (say their baby’s name) forever. Do you want to talk about her/him?”

If you are genuinely concerned that their grief is overwhelming them to a point where it is unhealthy – that is they aren’t taking care of themselves or their family or they seem suicidal, say,

“I know you will miss (say their baby’s name) forever. I miss them too. I am worried about you. Is there anything I can do to help? Do you want to talk? ”

Educate yourself and contact your nearest SIDS and Kids. They have counsellors who are experienced in consoling the grieving and they can help you understand what your friend needs and how you can help.

Ever since you lost your child, I have been terrified of losing mine. Being around you makes me uncomfortable.
Fortunately, child loss isn’t contagious. But you do feel terribly, terribly alone. Having people move away from you because they see their worst fears realised in your life adds to that isolation. It is natural to fear something that has suddenly become real in your world, but that’s something you need to deal with – not the parent that has lost their child. Think about the level of your friend’s discomfort and compare it to your own. It’s not that bad is it?
Instead say “I am so very sorry that (say their baby’s name) isn’t with you. They should be in your arms. Please let me know if being around my baby/bump makes you uncomfortable. “

I don’t pretend it’s easy to find the right words. I don’t pretend it’s easy to go out of your way and really help the grieving. I don’t pretend that it’s easy to step out of your comfort zone. But, at the end of the day, if you think any of it’s really hard, it’s nothing compared to losing your child.

24Sep2013

Dear Mummy

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

I have had a rough week. Plagued by doubts about my ability as a mother. Many episodes of being convinced that Elijah will die. Watching each breath as though its his last. Missing Xavier more acutely as I am reminded exactly of what I missed and time takes Elijah further away from Xavier’s little life.

When it all gets too much, I imagine what Xavier might tell me if he could.

Dearest Mummy,
I have seen you struggle these last few days. Seen the tears fall and wished I could wipe them away.

When you watch over Elijah, so convinced this breath will be his last, I am watching over him too. I promised to keep him safe. Trust.

Why do you think yourself a poor mother? You have been told so many times you could not save me. You have been told so many times you are a good mother. Those that you know that have suffered loss, those you have cried with, do you judge them poor parents? Do you think them anything but beautiful and wonderful parents? Turn some of that kindness to yourself. You are a good mother. Believe.

I know you hold him in your arms and ache for me. I know that having a newborn has made what we missed so much more real. I know that connecting on a spiritual level comes a poor second to touching, kissing, breathing in sweet baby scent. I wish things could have been different too. But this is what we have. And I need you to still nurture it. I still need you. Love.

These days shall pass. Too quickly. Enjoy them. Enjoy the moments that will eventually draw us together again. Cherish.

I love you mummy.

16Sep2013

The New Me

Posted in Connecting with Angel Child, Grief over child loss by Robyna

The baby loss community is an especially beautiful and supportive one. When a new member joins this terrible little club, they are extended love and understanding. When I joined this group that no-one would ever want to be a part of, that support was invaluable.

In the wake of Xavier’s death, I found comfort online but I needed to see someone who had lost their child and was still living and breathing. I met with a gorgeous lady who had lost her baby son many years ago. At the time, I was in a strange robotic stage of grief. Not entirely sure what I should be doing or feeling but fearing the future. I was acting from a script I had to re-write myself from day to day. In so many ways feeling liking a passive observer – watching myself from a distance and fascinated that this was the way I was handling things. I felt like I was edging along the huge abyss of time that separated me from Xavier and any mis-step would see me fall right in. Was this my life from now on? Was it even possible to sustain? How would my life look in the months and years to come? So, I looked to this lovely stranger who shared my devastation and she told me how her son had changed her – how her grief had reshaped her into a very different person. A better person.

I didn’t want to hear it. I didn’t want Xavier’s loss to make me into a better person. I was entirely fine with the person I was before he left. I needed no extreme makeover administered by the hand of fate. And this empty vessel, clinging to life, battered on the shores of grief? I didn’t want to be her. I looked in the mirror and I couldn’t recognise myself. I had become a stranger. This was not some better version of myself. This was a shadow, an echo. A leaf on the wind, without substance or purpose. I didn’t want to get out of bed and be strong each day. I didn’t want to be looked at with pitying admiration. I had no interest in being an inspirational story. All I ached for was my son. I would think “this grief thing has been interesting, I have learned a lot but I will have my son back now please”. Hoping against hope that someone would come to the door, Xavier in their arms, and apologise for a dreadful mix up.

In that early time, I was convinced that Xavier had been taken from me to teach me a lesson. To show me that life couldn’t be perfect. Until that point, my life had remained untouched by tragedy and was rich with blessings. I thought I had been spared fate’s cruelty. And then it was as though fate noticed me, said “Ah yes, she’s had it easy for far too long, now, what’s the worst thing I could do to her?” And this conspiracy by fate to teach me a lesson – I wanted no part in it. I would not be taught – I would not allow a reason for Xavier’s death. If grief had gifts to give, I didn’t want them. Accepting them felt too close to accepting Xavier’s death.

Could I not simply go back to who I was after a period of grieving? Did I have to lose who I was as well as my son? Where did the losses end?

But grief becomes a gentler companion with time and it was inevitable I would change. Perspectives alter when your world shifts. What is important becomes crystal clear and you begin to see that it is possible to gain in the midst of loss. I began to realise that the person I was becoming was a way of honouring Xavier’s life rather than giving some sort of credence to his death. Began to appreciate that treasuring every moment was a gift he had given me. In the early months after Xavier died I struggled with the idea that the happiest moments of my life were behind me. That no beautiful moment could ever be perfect. Whereas I may have had plenty of those perfect moments prior to Xavier’s death – did I realise them? Did I treasure them? Did I truly realise the full precious weight of those moments? And so now, even though the moments are dulled by sadness, I appreciate them in way I never could before. There is more beauty in my life because I pause to notice it. I invest more in friendships because I know how valuable they are. I love more because I have seen just how much I am loved. I take each moment as a gift. Each of those moments, strung together and stitched into time. Those moments that rather than separate me further from Xavier, will eventually bring me back to my son. And that is something to treasure.

12Sep2013

Are You OK?

Posted in Uncategorized by Robyna

Today is Are You OK? day. A day that reminds us of the importance of reaching out to those around us. A day where we should go beyond a casual, throw-away “How are you?”

That question has become an empty courtesy – like “Hello” and “Good-bye” but how often do we expect or want a real answer? We are taught to reply “well” or “fine” when we may be anything but. When we first lost Xavier I learned to distinguish between the sincere “How are you?” and the concessions to politeness. Indeed, there were many who avoided asking all together, I can only imagine for fear of the answer. It’s a brave thing – to ask “Are you okay?” or “How are you?” and be willing to truly accept the responsibility of a honest answer. In our time poor, meme rich lives, how often do we engage in real conversation that reveals the heart? We have become used to a few words on a Facebook status to describe “How are you feeling?” But our hearts and souls need more than that. We need time and conversation and nourishment. How often are we willing to invest that time in one another?

In the first few weeks after Xavier died, when strangers asked “How are you?”, there were times I responded with a completely honest answer. The poor clerks at the check out saddled with an answer that they did not expect. But I needed to tell someone. I needed to say “Not so well – I am hurting today”. And sometimes, the only person that asked was a stranger who was paid to be polite. Most times, however, my beautiful family and friends asked that question in a genuine way. I have two very close girlfriends who are lights in my life. When I would reply “okay” they would respond “no, really – I want to know how you are going today.” And it gave me permission to go beyond our societally regulated responses to the question “How are you?” We need to give people around us that permission – we need to let them know that we genuinely care. When my lovely boss asked me how I was a few weeks after Xavier died, I replied with my standard “okay”. She shook her head and said “You aren’t – you’re not okay, but you will be and right now it’s okay that you’re not okay”. Sometimes we just need to hear that too – sometimes it’s okay not to be okay. I value every time someone genuinely gave me the opportunity to talk about my feelings, particularly in the days, weeks and months following Xavier’s death.

I think that’s what “Are you OK?” day is about – it’s about creating the time and space and love around someone to allow them to talk about what they need to talk about. It’s being completely unselfish and completely genuine when asking the question “Are you OK?” or “How are you?”

So today, ask someone “Are you okay?” and be truly engaged in the answer. You never know the impact it will have on someone’s life.

30Aug2013

Grieving Fathers – a Poem

Posted in Grief over child loss by Robyna

As Father’s Day approaches I wanted to share a poem I wrote about men in grief. The strong and silent grief that bears the weight of supporting a fractured family. The grief that rarely speaks, but is just as important, just as real and just as painful as the grief of a mother.

A Baby and His Daddy

It’s very early morning,
The clock is nearing one,
And the tears are finally falling,
For himself and for his son.

The girl beside him sleeps,
He doesn’t want to wake her,
For when the morning breaks,
The grief may overtake her.

In these still and silent hours,
He can let himself feel,
He can let himself be broken,
He can start to heal.

For those still and silent hours,
Before the sun lights up the sky,
Belong to a baby and his daddy,
The time that he can finally cry.

22Aug2013

Ladders in Loss

Posted in Uncategorized by Robyna

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.

18Aug2013

August 19th – Day of Hope

Posted in Connecting with Angel Child by Robyna

Today is August 19th – a day of Hope. A day to talk about children gone too soon, whether they lived outside the womb or only within it. A day to remember those with hearts of mothers, but have not yet been able to conceive. A day to shatter the silence that surrounds child loss and infertility and to remember all those little footprints that have left a large imprint on our hearts.

Like many bereaved parents, I found my way to Carly Marie’s beautiful blog in the weeks following Xavier’s death. At the time (July 2012), Carly had just introduced her new project – an opportunity for the bereaved to make their babies prayer flags which would be strung and photographed on Christian’s beach. Being a crafty kind of person, this project seemed perfect.

Making things for people is one of the ways that I show love and this seemed such a beautiful way to express my love for Xavier. As I selected lace and ribbon and beads, I felt moments of calm that had previously eluded me. When I sat making the flag up for darling boy, I felt closer her to him than I had in some time. I had thought that preparing his funeral service (which I did meticulously) would be the last public act I would be able to do for my son. To realise that I could create and share that creation with others was a joyful discovery. In the quiet moments I spent sewing, embroidering, planning I felt like I was nurturing my son – it was a feeling akin to the sleepy, beautiful bubble that surrounds nursing your child. It helped me realise that my need to mother was not extinguished when Xavier’s life was. That there were still ways to connect with him that did not centre around sadness. I made two flags initially – copies of each other – one to send to Carly and the other to hang in our home. Last year, I was lucky enough to meet the gorgeous Carly and she told me that Xavier’s flag was amongst the first she received. When she posted a picture of it, amongst others, as inspiration to others I was so happy – not just because I was beyond flattered that Carly thought it beautiful but that so many more people would see Xavier’s name.

I was not ready to give up the healing that crafting the flags had given me, so I made several more, each with words that felt inspired by Xavier. Those flags now hang on our verandah, with fairy lights strung around them.

I made Xavier another flag on his first birthday this year and strung more ribbons. I have made flags for close friends on special occasions – another way to share Xavier’s love with those around me.

This year Carly is again hosting a Prayer Flag Project– this time each of us will photograph and share our flags to celebrate August 19th – Day of Hope. I decided to make a slightly different flag this time – my previous flags have all been ribbons, lace and ethereal beauty. This time I wanted to make something more earthy and representative of his presence on earth, rather than heaven. His sunshine is the most important symbol to us, so I chose to reflect that. Once again, creating for my son allowed me feel his presence and his peace.

I photographed this as the morning light came up
and lit the candles we gave out a Elijah’s mother blessing.