A crisis of confidence

Posted in Back to work after loss, Grief over child loss by

I remember it quite clearly. Driving with my sister, Xavier in the back-set only precious days old. I remember telling her how blessed I felt. How everything in my life felt pretty perfect. That there were a few little things I would change but in the grand scheme of things they seemed so minor that complaint seemed ungrateful. Did I throw down a challenge to the universe when I uttered those words? Did life suddenly notice that heartbreak had been conspicuously absent for too long? I have given up searching for reasons as to why Xavier died, but in the early days that was a big one. Life had been too good for too long and the balance needed to swing wildly in the other direction. When my son died, the world beneath my feet crumbled. And I had been so sure of that solid earth. And even now, more than two and a half years later, the ground still shifts.

I might have imagined grief as an ocean of tears to swim through. Or a staged process with an outcome. I might have thought sadness to be the primary emotion. But it turns out, that’s not how grief works. Grief is, above all other things, unpredictable. It changes your footing. Even when you think you have slain a particular dragon, it rears up and strikes again. At the moment, my self-confidence is taking a beating. There are a variety of reasons for this – I am challenging myself and pushing myself into uncomfortable and unfamiliar territory. That’s never easy, but I can’t help but think the girl who I was before Xavier died would be tackling it with more confidence. That she wouldn’t second-guess herself so much.

When I headed back to work, months after we buried Xavier, I was frustrated with myself. Tasks I once found easy took three times as long. Words that once flowed were stilted. The escape that I sought in work didn’t prove the distraction I’d hoped for. Before Xavier died, I swam easily through clear waters. After he died, that water turned viscous. Everything was a struggle. And that, in and of itself, was so frustrating. I was continually exhausted from the effort of merely appearing normal.

Eventually, I found my way. The viscous thinned, but never returned to the consistency of water. And now, as I embark on a new adventure, I find myself thrashing again. I know I am not the only one to do this – to turn on myself and become my worst enemy. I throw unhelpful thoughts and walls up. And when you are busy beating yourself with a stick, telling yourself that you failed to protect one of your precious children delivers a crippling blow.

There are so many things that change with grief. Self-perspective is a large one. Where once I believe the earth beneath my feet rock solid and incapable of movement, I now know it’s quick-sand. When life travels along beautifully, I watch over my shoulder, breath held, for the pendulum to swing the other way. And I find it hard to believe the universe will deliver simply because I wish it to be so. I know that the only way for me to succeed is to believe in myself. To realise that the self-doubt may never leave, but to walk on fearlessly anyway.

Sitting with Sadness

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I was sad the other day. Not aching grief, just sad. Low. At first I wanted to reach for grief as an explanation. But I know how grief feels. I can feel it’s distinct pull. This was apathy and malaise and exhaustion and not being bothered. I desperately wanted to feel something else – I had things to do and words to write but it all felt impossible with the weight of this sadness. I tried to bully myself out of it. I am convinced that I can think myself out of any situation. That if I tell myself to snap out of it, I will. Sometimes that works, sometimes it doesn’t. It didn’t work the other day. I tried counting my blessings. It just made me feel more miserable that I was sad in the face of blessing. Sadness feels like failure. We are not meant to sit with sadness, we are meant to strive for happiness. It has become the default expected emotion.

But maybe it’s okay to sit with sadness sometimes. In the darkness of my grief I sat with sadness as a constant companion. It was not possible to think myself out of it. I could not shake it off like a skin, it had permeated my being. And I was given permission to be sad. The saddest thing I could imagine, a baby dying, had happened and it happened to our family. There was no pressure to be happy – to count my blessings and put away the tears. Sadness was to be expected and it was okay. This permission to be sad taught me something. I don’t think it’s fair to expect our emotional lives to ride on a constant high. Constant happiness sounds like a great idea, but expecting it and panicking when it’s not our reality, seems to cause more angst that happiness. There is a lot of guilt associated with being sad. Immediately my mind asks “What right have you to be unhappy?” When I had a very good answer to that question, I could let the pressure go.

There are times when sadness feels like sitting in a great big hole. People pass you, shout down and invite you to come back up. Someone might throw down a ladder or the tools they think you need to build one. And then, once in a little while, someone might come down and join you. Say “I know you won’t be down here forever, but for just a little while, I will stay with you and keep you company.” And with that kindness, the hole doesn’t seem so deep anymore.

I don’t want to feel miserable. I would prefer happiness. But pushing myself to be happy when I feel blue isn’t the answer either. I can’t tell myself to be happy. I can do things that make me happy – and that’s generally where the magic is – to find those things that bring me joy and immerse myself in them. To write, or to create, to dance, to laugh or to read. Sadness is a part of our human experience – it’s not a sign of failure, it’s a sign of humanity.

Holding onto baby

Posted in Grief over child loss, Helping those in grief, Parenting after loss, Rainbow Baby by

Baby Elijah is a hesitant walker. At eighteen months old he still prefers to shuffle along the floor, one leg extend out the back to provide momentum. He is surprisingly fast. He took his first hesitant steps at around sixteen months and we expected him to start running shortly thereafter. That hasn’t happened. The doctor says it’s okay – that at least he IS walking and if doesn’t move to predominantly walking within the next few months we will look at it further. We are cautiously watching. There is a part of me that is worried. There is a part of me that doesn’t mind at all. A part of me that aches to keep him a little baby. When I see him on his unsteady feet, cautiously placing one foot in front of the other, my heart catches. Another milestone Xavier never had a chance to reach. And a reminder that Elijah is leaving behind a babyhood that Xavier is forever frozen within.

When Xavier died, I ached for him and if I couldn’t have him, then another baby. I wanted my arms to be full of dimpled skin, baby scent, peach fuzz hair and helplessness. I wanted my arms to be full of baby. Then Elijah arrived, and my wish was finally granted. The aching arms finally had someone to hold. But my arms are not quite as full anymore. Life is yet again beckoning in a different direction. My days are no longer completely full of tending to a little one. Elijah is in daycare two days a week, allowing me time to set up and run a new little business. Isaac is back at school and taking to grade One like a duck to water. I am faced with new challenges and once again redefining myself.

After Xavier died, I had to figure out who I was – it was a difficult thing – to become someone I hardly recognised. But slowly the pieces came back together and we were gifted hope when I became pregnant with Elijah. I became someone else again as I emerged from the darkest parts of grief, the hope and the happiness of a new baby coaxing me from under that heavy blanket. I found a new purpose in bringing up my youngest son. He consumed me where once grief had consumed me. And now, things are changing again. Chapters in life close and new ones open. The poignancy of that seems to be sharper when you have left someone behind.

The other day, I felt the turning of that page keenly. I dropped Elijah at care. He did not cry and he happily played with a toy as I left. I went into town and met with people and for the first time I spoke about my new business like it was a realistic proposition. The wheels started to turn. I caught the bus home, feeling confident and excited, rather than scared and deluded. The lady next to me started chatting about the weather and it led to other things. She asked if I had any children. These days, I say “I have one at primary school and an eighteen month old” and then I whisper “and one in heaven” to myself. I asked her the same question. She looked at me sadly “I have one son. He died two years ago to the day and I am feeling very lost today. He was my only child. The love of my life and he died of cancer at not even forty years old.” She had no grandchildren. Her son and his wife had chosen travel over babies. She told me about her son and I asked her questions. I was going to tell her about Xavier, but she didn’t need my story. She needed to tell hers. I got to learn about her one true love and I was reminded, yet again, that each of us has a story to tell. No-one lives the perfect life. We need to be kind and mindful of each other – for every one of us has shards of glass in our hearts. And how blessed am I, that I get to see my baby Elijah grow up.

And so I will smile and clap as he shakily walks, letting go of my hand.

The true things that people don’t see

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

Here are some things that are true:

  • I was pregnant for nearly nine months with Xavier. It was a happy and uneventful pregnancy.
  • I gave birth to Xavier. I birthed him and I held him and I cried as he was placed against me for the first time.
  • He lived for two little weeks. He fussed and he cried and he made me laugh.  He was held by a proud big brother.  He met family and friends.
  • I am a mother to three sons.

I felt like I had to write these things down. To make them feel concrete. Because so often, those facts seem unsubstantiated and unsubstantial. Paper thin. A mirage.

When people meet me for the first time, they presume I am a mother of two. People ask whether I will have a third child. There are only two little beds in our house. Two carseats. Two little heads that snuggle against me when I hold them. I hold two boys in my arms and three in my heart. I am a mother of three, appearing as a mother of two. And very often that appearance feels more real than the truth.

In the wake of Xavier’s death, I wanted to scream about his existence. I would tell anyone who would dare ask. He was so real to me. My life was so full of him. I felt I had to advocate doubly hard for the child no-one could see. He was the largest thing in my life for a long time and he could not be seen by anyone else. There was a large and painful hole in my life where my baby boy should have been. A gaping black hole that could swallow a person. But that hole started to close. I learned to experience him in different ways and that allowed me to miss him less. I think it was the missing that made the hole so large and angry and empty.

Sometimes it feels like my life has been cut into thirds. The girl before Xavier’s death. The girl in the wake of it.  The girl who emerged from the darkest of grief.  And it’s hard to grasp onto the girl before. It’s hard to think of those people as linear. They feel more like tangents.

My life now is full – it is not without pain – but for the most part I have no complaints. There are days when I miss him dreadfully – his birthday or anniversary – and there are days that I miss him for no other reason than he is gone. But I do not feel the pull of that dark hole anymore. And here I stand, a bereaved mother but no longer a heavily grieving one. A mother of three boys in a world that only sees two. And a fading memory of a tiny boy with peach fuzz hair and eyes like his great grandfather’s. His essence, who he is now, is alive and vibrant in my life but it is getting harder to recollect the tiny baby. And so it is with time. And so it is with grief.

The Truth about Rainbow Babies and Sleep

Posted in Parenting after loss, Rainbow Baby by

Sleeping BabySleep and babies is a complex issue that we often make light of. We laugh in public with our friends about how hard it is and we cry in private over how hard it is. Having a baby after loss has added another dimension to an already fraught subject.

My second son died in his sleep. He died doing nothing more dangerous than taking a nap. Babies need sleep, so do parents, and yet how could I trust it? When I was pregnant, I would say, “I just want a baby that doesn’t need to sleep.”  Of course, that would be ideal if I didn’t need to sleep. In those early weeks, when I was so very sure that Elijah would be stolen away in the same way Xavier was, I did not sleep very much. But it was okay. I could handle it with my husband home and the sheer exhilarating joy of having a living baby in my arms. But it wasn’t sustainable.

Up until Elijah was five months old, he slept in a cot beside my bed. He would stir and I could comfort him. When my heart starting beating fast at the thought of losing him, I could place my hand on his and be reassured. He stayed in that cot for longer than he should – he too large for it and me not ready to let it go.

Then we moved him into his own room, with monitors and sensors and a deep-seated fear. I would hesitate before entering his room, steeling myself for the worst. He didn’t enjoy the move and at seventeen months, he still rarely sleeps through the night. He would cry, and I would immediately go to him. How could I not? How could I deny this precious little one anything? What if his life was cut short?

When Isaac was very little, and I was completely innocent of loss, I would breathe a deep sigh of relief when he finally settled. Mothers know that feeling – when your baby is finally silent and relief sinks into your bones and meets the tiredness that lives there.  When Isaac’s cries finally gave way to softer breath and sleep, I would lean back into my own pillows, exhausted and fall into oblivion. I could not do that with Elijah. He would settle and a new set of anxieties would begin. A crying baby is a living baby. A silent baby might not be. And so whilst he had the sleep he desperately needed, I lay awake with terrors I could not silence.

My fears for Elijah have lessened as he has grown older. I no longer go to bed convinced I will wake to tragedy. But terror still flares. When he is unwell, I imagine the worst. And some days, for no reason at all, I will hold him tight, fearful for his future.

I have pretended that surviving on four to six hours of sleep a night is perfectly normal. That is perfectly possible. That it doesn’t effect me. It does effect me. There have been times when I have driven and I shouldn’t have. There have been times when I have placed myself and my children in danger by doing so. Yet, somehow, the possibility of an accident is distant and improbable. Whilst the possibility of Elijah being stolen away in his sleep is plausible, and for the longest time, even likely.

Someone once described managing the sleep of a rainbow baby the following way: imagine losing your child in a plane crash. Now imagine having another child and being forced to take a plane trip with that child, several times a day. The risk of Elijah dying by SIDS is not significantly greater than any other baby. Yet, for me, it seems so probable. For the first few months of his life, I was sure his plane would crash.

We now have a child that cannot settle himself to sleep. It feels like a failure on my part. We have had to exercise some tough love and let him cry it out. Every sob is a dagger to my heart. Every single fibre of my being wants to go into his room and comfort him. I am terrified that he will not wake in the morning and his last memory will be of crying out for me and being ignored.

Elijah brings immeasurable joy to my life. He has brought healing when I thought I would never be healed. But there will always be cracks. There will always be the whisper of life lost. There will always be doubt. And I think I will struggle with his sleep for a long time yet.

Christmas and Regret: Did I give him enough?

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

Christmas WreathThe Christmas tree has been packed away. The lights have been stowed. Stockings no longer hang and wreaths have been taken down for another year. Christmas is well and truly over and I am a little sad. Not the usual Yuletide  hangover, but regret that Christmas wasn’t as magical as I could have made it. We had sickness and birthday parties, beach holidays and projects that all encroached upon the season. Christmas cookies were hurriedly baked on Christmas Eve. The school carols were rained out and we didn’t get a chance to go to another. I didn’t go to a Christmas Eve mass, as I was so very tired and unwell. Hand made Christmas presents went unmade. We didn’t take the train one evening to see the big Christmas tree in town.

I didn’t make Xavier a decoration this year and I didn’t place a Christmas tree beside his grave. His little Christmas area was necessarily condensed due to the reach of a curious toddler.  I didn’t get a chance to write Xavier a letter. Out of everything, these things sadden me the most. Sometimes life gets in the way of the best laid plans. And I feel like he was forgotten – not by family and friends, but by me. That he didn’t have the Christmas he deserved.  Continue reading →

What New Year means when your child has died

Posted in Connecting with Angel Child, Grief over child loss, Helping those in grief by

Missing your Baby with you this NewAs 2012 passed into 2013, there were many that assumed I would feel a sense of relief.  That I would be glad to turn my back on a horrific year and say good riddance to it. Like so many things in grief, it wasn’t that simple.

I was pregnant New Years Eve with Elijah and so 2013 held the promise of a new baby and healing. It also felt like leaving my son behind. As the only year he ever knew faded into history I felt another pang of loss. 2012 would forever be his. It would hold the two weeks of his life. It would hold the joy of his birth. It would hold the lovely, easy days of his pregnancy.  It would hold the devastation of his death. It would hold the day we said good-bye. It would hold my last days of naivety and innocence.

On the cusp of another New Year, my memories of him are fading a little. Still there, but yellowed around the edges, a little fuzzy. The sharpness has faded, the pain has dulled, but he feels further away. And that’s the thing about time. People will tell you that time will heal – and it will. But it also adds distance from your loved one. I might not hurt quite as much, but I don’t feel as close to him either. I do not miss the darkest days in grief – I have no desire to return to them. Yet, I do miss the intense closeness I felt to Xavier. That closeness was inextricably linked to the depth of pain I was feeling. I do not think it is healthy to cling to pain as way of connecting to your child who left too soon. I do think it’s important to find other connections – but for me those connections are associated with how I view Xavier now – a soul, a spirit, a presence. They are not connected with him as a tiny baby, beautiful and helpless in my arms. That connection belonged to 2012 and it is difficult to let go.

If you are moving into a new year without your darling baby in your arms, be gentle with yourself. It is yet another milestone on a long list of milestones. I was surprised that my first New Year without Xavier brought with it the same depth of emotion and confusion as Christmas. I had not expected it to affect me so deeply. That first Christmas felt empty without him. The first New Years felt like moving on without him.

If you are supporting a friend who has lost a loved one in 2014, please don’t assume that they are happy to move into a New Year with all its promise of new life and healing. When you have lost someone dear, you hold to all that reminds you of them.  You hold to things that surprise you. And no matter how devastating the events of the year may appear to you, it will also hold precious, precious memories that will be desperately clung to forever.

Time is a great healer, but it is also a thief – it dulls the pains and the memories in equal measure. There is grief in that too.

Be gentle with yourself this New Year.

What if we reacted differently to the news?

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What If?The news over the past week or so has been bleak. In the season of peace and goodwill to all, we have seen violence and hatred. Two innocent people dead in Sydney, 148 school children and their teachers slain in Peshawar, eight young lives brutally cut short in Cairns. And each mourned, reacted to and reported upon so very differently.

Not long after Xavier died, there was a news story about a lost life. I can’t remember the details anymore but I can vividly remember my feelings.  This life lost resulting in a nation mourning. This life weighing somehow more than Xavier’s.  This life holding the attention of the entire country. My boy slipping away unnoticed.

We have seen cascades of flowers and tears for the two lives lost in Sydney. The reporting on that terrible siege carried us on its tide.  There was no avoiding it. The radio, the television, the internet, the papers full of one story and one story alone.  Even if we were miles away, it was happening in our country – it felt personal.

The actions of a lone man felt like an attack on all of our freedoms, our way of life.  And the national reaction was a response to that threat. Showing love and beauty in the face of fear. A sea of symbolic flowers drowning the hateful intentions of one person. Two people died. That is a tragedy. A tragedy that is repeated daily on our roads and in our homes and magnified across the world.  The outpouring of grief and support over those two lives was connected to a context that seemed to touch us all.

The thought of hundreds of children slain is incomprehensible. But there will be no tsunami of flowers for those young lives.  Lives lost in a far away place where peace seems elusive. Where only the most sensational of war crimes make it to our news.  The bits of news that make us sad and then very grateful to live in Australia. The bits of news that make terror seem very far away. The bits of news that seldom compel us to act. If two people died in a siege in Pakistan, we would not know about it. It would not even be considered news.

Eight young lives tragically cut short in Cairns. Behind closed doors. A family matter.  A terrible, terrible story but also distant.  I do not see myself in the face of the mother who appears to have done the unthinkable. I do not see my childrens’ faces mirrored in the school children of Peshawar – a place so far away and so mired in violence.

But I can see myself in the faces of Tori Johnson and Katrina Dawson. A mother. A partner. Middle class. Living and working in a safe city. Nothing to indicate that their lives would end so tragically. And so hearts bleed and petals fall.

But what if I could stretch my empathy and imagination to see myself and my babies in that desperately sad situation in Cairns? What if I could see my childrens’ eyes mirrored in the school children of Peshawar?

What would our world look like if we paid more attention? If we felt more? What would it inspire us to do? And how would it impact the world? What if we showed love in the face of hate more often, rather than apathy and despair? What would our world look like then? If every act of terror, act of hate, act of violence was met with an avalanche of flowers and an intention to make the world a better place.

The Gift of Time

Posted in Connecting with Angel Child, Grief over child loss, Helping those in grief by

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

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