Holding onto baby

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.

13Jan2015

The Truth about Rainbow Babies and Sleep

Posted in Parenting after loss, Rainbow Baby by Robyna

Sleep 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.

17Nov2014

Christmas when one is missing: Ideas to get through it

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

As 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.

This 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.
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.

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.
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.

7Oct2014

The Monkey and the Ocean – the healing power of waves.

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

I have not had a great week. A combination of small annoyances and a piece of unexpected news. There has been no great tragedy. There is no risk to my or any of my family’s health. The things that have gotten me down will be of no consequence in a few months time. I am a resilient person. Not by choice or by birth-right. But you walk through the shattered glass and you become numb to pain. Wounds close over and leave tough callouses. And when the shards you walk upon belong to your scattered heart, you quickly learn the difference between the things that matter and the things that do not. But despite having this perspective, the monkey still climbs on my back. With his claws of self-doubt and a weight that has me questioning my value.

I had to do some thing to shake him free. And with the monkey on my back, I went to Stradbroke Island with my boys and my parents.

There is a sense of freedom the moment you step onto that sacred place. The monkey loosened his grip as my feet found the sand. He very nearly left as we watched a wild fur seal playing at the rocks near the surf club. The seal danced in the ocean, turning as the waves rolled over him. Casting a wary eye our way. We passed a kangaroo on a walk, the monkey shied away but he didn’t flee. As I took in the view, the ocean and the beach stretching for miles, the monkey felt lighter, but he clung on still.

It wasn’t until I dived into the ocean and let the salt water rush over my body that the monkey finally sensed defeat. The cleansing power of salt and surf and the enormity of water finally shaking doubts free. I dived under the waves, aching for the silence. Just me and the ocean. As I came up for air, the water caught the sunshine rays and blinded me with its sparkle. There is joy and magic and healing within the waves. There is alchemy in the white crests that crashed around me. I lay, weightless, in the ocean. Letting the waves catch me and the worries float away.

Like all mothers, these moments for myself are snatched. I wanted to stay in the wilderness that dwarfed my problems, but I promised Isaac I would only be a few minutes.

As I approached the shore, I saw that Isaac was very upset. He had watched me go out beyond the breakers and was seized by anxiety. And I was reminded that he knows more about the reality of loss than any little boy should. Elijah’s chubby little arms reached for me as soon as he realised I was near. And I was reminded that, more than any one on earth, this little person needed me. And here is a different kind of wildness. A different kind of healing and perspective. And as I gathered my boys into my arms, I watched the monkey fade away.

30Sep2014

Capture Your Grief – My Journey

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

For the past two years I have joined Carly Marie’s ‘Capture Your Grief’.

The first year, so soon after Xavier’s death, offered a much-needed creative outlet for my grief. I documented my thoughts and feelings through images and words. Sharing those with other bereaved parents was powerful and validating. Sharing those sacred images with those close gave me some release. When all I wanted was to scream “My baby died! Stop world and recognise my baby died!” the project offered a place to be heard. I screamed through those words and images. I wanted them to be confronting, honest and brutal. I wanted some small measure of my pain to be evident.

Last year was different. The scars had started to heal over and my grief was no longer raw. I was more contemplative, more reflective. I was able to document lighter moments and hope. I wanted the images to reflect a softer side of my grief and the beauty of my son.

This year, I have been unsure about whether to take part. My grief has moved into an entirely different place. I see myself as a bereaved mother, but no longer a grieving one. Against all odds, my life has moved into a place I am happy with. And I have to ask myself, do I have any grief to capture? What will this project mean to me now?

The past two years, I joined in as part of my healing journey. This year, I will join in to mother my son. I don’t pretend that the place in my heart that belongs to him has closed over. It has not. But living with that pain has become second nature. The ugly shoes* of child-loss no longer pinch. My need is no longer to scream his name, but to speak it. And so the images I create this year will bear testament to a love that continues and a gentler part of this journey.

You can take part in Capture Your Grief 2014 by following the instructions in Carly’s post.

* An Ugly Pair of Shoes
Author Unknown

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

16Sep2014

Seasons in Grief

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

There are seasons in grief.

The first Winter – desolate and cruel. Seemingly unending. Life is frozen in the moment you said good-bye. Everything is grey, turned to ash. Food has no taste. Blooms no scent. There is a hollowness that echoes through every moment. The weight of a missing baby heavy against you. Absence, weighing more than presence. Crippling. It is impossible to concentrate, to still your mind long enough. There are words, and they fall, softly as snow, around you. You know they mean well but the words don’t bring summer back. And the void the baby who left made is so vast that you could fall into it at any moment.

Then, gradually, the Spring. Hope shooting like new grass. The colour starts to return to a faded world. You hear an unfamiliar sound and realise it’s your own laughter. You hold a newborn baby and instead of it ripping you apart, you think about a promise for your future. Life beckons and, with hesitation, you respond. You wonder if it’s okay – to let this in. Whether you are betraying your baby by smiling again. And then you catch glimpses of him – when the light hits a certain way, when a butterfly floats near, an unexpected tiny white feather settling on your hand. If you listen very carefully you can hear him. And he wants you to be happy. You open the window and you let hope in.

Against all odds, Summer enters your life. There is joy again. There is sunshine and there is life. There is beauty and purpose. There are so many things you once never thought possible. And against this brilliant blue sky, the knowledge that you lost a baby feels uncomfortable. How could you have lost someone so precious and be happy? How is it possible that a life full of love and laughter can also accommodate such enormous loss? You once thought that you could never be happy again – that life could be bearable at best. Yet, here you are, filled with contentment. The photos that once could only illicit tears now bring a melancholy smile and there is gratitude for being part of a precious life, no matter how short. You have come to some sort of peace. Not an acceptance, or even an understanding, but a life that can accommodate loss and still be beautiful. You feel him in that sunshine and it warms your heart.

Autumn falls. Little reminders. The tug of winter. Things that were once easy, become less so. An anniversary approaches, a birthday, Christmas, Mothers Day, Fathers Day. Days that remind you of the great hole in your life. Or perhaps it is a word, a memory, a song that cuts at the wound not quite healed. A chill enters. You try to shut the door, to close it out, but winter is insistent and sometimes grief has its own agenda.

And then Winter can come again. Never as long or as cruel as the first, but the sadness creeps back.

But no season lasts forever and love lasts through them all.

26Aug2014

Dearest, I hope you don’t mind

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

Dearest Xavier,
It’s been a while since we talked. I am sorry. I have to wonder if you mind. I have to hope you don’t feel forgotten.

In the early days after you said goodbye, my every thought was full of you. My arms were empty but my mind overflowed with you. The hole in my heart was exactly your shape. Yawning and bleeding and wide. And I spoke to you and I spoke of you. You were never far from my mind or my lips. But time has become the healer they promised, even when I didn’t want to believe. And you have settled into a different place.

When the hair dresser asked how many children, I didn’t speak of you. But I saw you as I drove home against the bubble-gum pink sunset.
When the lady at swimming asked about my boys, I didn’t say your name. But she pressed and asked about the age gap and I told her that you lived. And that you died. And she wondered how you ever recover from such a thing. I held your little brother a little closer and said he helped immensely. Because what else could I say? I hope you don’t feel betrayed.

In the earliest of days I did things for you constantly because I was convinced that I needed to mother you and more than that, you needed me to mother you. As I move away from my need does your need lessen as well?

Oh my little man, please know you are still loved. As this river called time seems to pull me further away, know my heart is still tied to yours. And although my thoughts are no longer tied in knots around your memory, your memory is secure and safe. My dearest Xavier, as I heal, I hope you don’t mind.

20Aug2014

Lucky

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

Last night I grabbed a few groceries after Isaac’s swimming lesson. The boys were fractious but it didn’t stop Elijah flirting with a lady working at Woolies. She paused, played with him a moment, commented on his cuteness and said to me “You are so lucky”.

Perhaps I imagined sadness in her eyes and a wistfulness in her voice. I wondered if she had been affected by loss or infertility or a life that ended up in different place to what she had hoped for. I thought about asking, but I didn’t. I thought about telling her I could be luckier and have all my three boys with me, but I didn’t. In that particular moment, with dinner, bed and bath time pressing against us, I didn’t feel particularly lucky or grateful. But I know I am. And perhaps I needed reminding.

I view “lucky” with a different lens after loss. I feel lucky that we had fourteen days with Xavier. I know that not everyone gets that much time with their little one. I feel lucky that he held onto a glimmer of life for twenty-four hours after we found him without breath. A day is longer to say goodbye than many people get. I feel lucky that we were so well looked after by the Mater and the beautiful social workers there. I feel lucky that I found a group of bereaved mothers who understood and understand me. I feel lucky that I have been given space and support and permission to grieve. I feel lucky that I have this place to remember Xavier and write in his memory. I feel lucky that I have the words to write. I feel lucky that Xavier’s memory is held precious by so many dear to me. I feel tremendously lucky that I have two living children to hold and kiss and adore.

I cannot count the number of times I have spoken to other bereaved parents and we have used that word – “lucky” – to describe various aspects of our experience. It’s always accompanied with a rider – “it’s funny what we think of as ‘lucky’ now.”

Before losing Xavier I had a different view of luck. I didn’t really believe in it. Someone would tell me I was lucky and I would respond with a glib “Yep, and the harder I work, the luckier I become.” I had a perception that you made your own luck and that bad luck was generally predicated by bad choices.

Age and experience has taught me that life is not so tightly controlled. That fate can be cruel and that luck plays a larger part in my life than I might like.

I look at my darling boys and I know, I am incredibly blessed and I am very lucky.

16Jul2014

First birthdays, Rainbows and Growing Up

Posted in Parenting after loss by Robyna

In a few short weeks Elijah will turn one. It is impossible. My tiny baby is growing up. I feel the melancholy of every mother as he takes his first tentative steps away from babyhood. My heart aches as I put away the clothes he no longer fits, knowing that the next baby to wear them will not be my own. I look at his photos, taken when he was so new and tiny and wish myself back to that moment. He takes up so much space now – in his cot, his pram, his car seat – and I feel a pang as I remember when he looked so little in all of those places.
As a bereaved mother, One feels improbable. I have only just accepted that Elijah’s presence is permanent. I was drinking him in, savouring him, fearing that if I did not, I would deeply regret it when he left. He has not left and he will not leave but I am grateful that I have treasured the moments so carefully. I never let myself believe that Elijah would be one, or two, or twenty. It seemed presumptuous and arrogant. And now, here we are, on the brink of a year on earth.
Elijah was never born to replace Xavier, but we did think he would bring healing and hope. He has brought both in equal measure. As a newborn, I projected a comforting, healing personality onto my son. When babies are too tiny to express their opinions, we imagine what they may be thinking. Look at their little faces and prescribe thoughts to their expressions. We form an idea of their personality, their likes and dislikes before their personalities emerge. Part of Elijah will always represent healing to me, but he is so much more outside that persona. He suddenly has a host of opinions on a variety of things. He gazes at his brother adoringly and will laugh at his antics with a giggle reserved purely for Isaac. He will reach out for cuddles from the people he loves. He will try to pat any dog that might come his way, accompanied with a determined “d-d-d”. He will attempt to catch and return a ball. He scoots along the floor, with his funny crawl, at top speed with a broad smile when his father comes to the door. He wiggles his way out of my arms to explore and demands being scooped back into them when he has satisfied his curiosity. He has dozens of toys, but will always choose the Tupperware and DVD drawers as his favourite play things. He is funny and bright and calm and inquisitive. He is not the sage old soul brought on earth to give me comfort that I may have first imagined. He is light and colour but he is so much more than a rainbow baby. He is Elijah. And as he grows up, as I am sure he will, I look forward to learning ever more about him.

11Jun2014

Everything I need to know I learned from my kids

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

Most parents agree that they learn more from their kids than they ever teach. Today I was reflecting on the lessons my kids are currently teaching me.

From my dear five year old Isaac:
The world is full of friends you haven’t met yet I think every parent has marvelled at the ability of children to instantly make friends in the playground. Isaac never worries whether he will be accepted. He assumes that everyone wants to play with him. He doesn’t analyse the situation and if someone doesn’t want his friendship, it’s accepted with a shrug and viewed as their loss. He doesn’t ask much of these friends. Just to have a good time within the moment shared. There is no sting, no anguish and a world of possibility. He does not complicate things that are not complicated.

My dear little Elijah: Celebrate your wins and don’t compare yourself to others Elijah has an adorable, completely non-conventional crawl. One leg remains curled underneath him whilst the other extends out, acting as a sort of rudder as he manoeuvres himself around. It is effective but it doesn’t look like everyone else’s crawl. When he gets from point A to B, a broad smile of pure joy and pride beams across his face. He doesn’t compare himself to others. He doesn’t fret about being different. He doesn’t frustrate himself by wondering why he can’t crawl like someone else. He doesn’t need to restrain petty jealousy as he watches another baby his age crawl or walk. He just loves what he has achieved. He celebrates his successes with conviction and without comparison.

My dearest Xavier has probably taught me the most. But of all his lessons, one of the largest is about our incredible resilience as human beings. We can survive the impossible. We can rise above what tries to drag us down. The only limits we have are those we build ourselves. Xavier, as a baby, was fragile. A hidden fragility that meant he slipped away during sleep. But he too is resilient. His name has not been forgotten and love for him still abounds. If we choose, we do not need to be limited. The human spirit is far more powerful than we ever dare dream. And sometimes, it takes a human spirit to remind us.