What do with the days that belonged to your baby

In the first few weeks after Xavier died we were busy. There were dozens of terribly sad, nearly impossible tasks to fulfil. And even as those horrific tasks centred around Xavier’s burial and good-bye, they somehow diverted our attention away from our new reality. With shock as our armour, we numbly went about organising his funeral. Even as grief overtook us, we were at least engaged in activities for our son. The very last things we would do for our son – but Xavier was still central to it all. Our house was regularly full of people. My beautiful sister was my family’s saviour and she stayed with us for more than a week, helping us with the day-to-day tasks that then seemed as improbable as flying to the moon.

But eventually, she had to return to her work. N had to go back to his office. Life settled into normality for everyone else. And my maternity turned bereavement leave stretched long in front of me.

The house was suddenly very silent. That it could feel so empty – when Xavier had been such a quiet, small presence – seemed impossible. Isaac continued at kindy for two days a week. I felt it was important that his routine continue. I had two empty days to fill each week. Time that should have been lavished on a newborn stretched endlessly in front of me. There were so many days I would go to bed at 8pm – exhausted by grief and relieved that I could attempt escape in sleep.

Eventually, I worked out a routine for the days that belonged to Xavier. I went to a personal trainer and as my will began to wane and the reps got harder, I would dedicate each sit up, each push up, each weight to the babies I knew. This one is for Xavier, this one for Teddy, this one for Harry … After each session, I would visit Xavier’s grave and talk to him. I would bring little gifts and tidy his headstone. I would lie down and hope that he felt my embrace. I would sit in the sunshine and feel him embrace me back. I caught up with supportive girl friends who let me talk about my grief. I would write. I would create. I would try to grieve in a positive way.

Those days remained Xavier’s. I was unable to mother him how I wanted to, but I still used that time to mother him. That time allowed me to build the foundations of a complex relationship that I still don’t fully understand, but that keeps him close.

Eventually, my busy life started to return. There were fewer opportunities just to sit still and connect with my baby. Now, I find myself having to carve time out for Xavier. Jostling with his brothers for my attention.

As endless and as difficult as those early days seem, they will pass. Life has a way of bringing you along her tide.

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.

7Aug2014

The Grief Words

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

Your world shatters. You find yourself alone. You see pity and sympathy in the eyes of family and friends, but they do not understand. They hurt, but their hurt is not your hurt. You search for others who share your story. You try to normalise the thing that is so far from any sane normality. You find them. Online and in person. This community of loss. This beautiful and fragile community of tattered souls. Facebook groups, blogs and forums dedicated to babies and children stolen from their mothers’ breasts and their fathers’ embraces. And there is such aching beauty. Words strung together as delicately as beaded necklaces. Artwork that touches deep nerves. Poems and images that steal your breath as they gift you tears. Enormous and important things achieved in the name of children who may no longer live on earth but whose impact is great.

But through this thin veneer of beauty, do we hide from ugly truth? Do the newly bereaved come across these sites and wonder where the pain is? Where the heart-stopping, gut-wrenching, puking, sobbing messes are? I don’t think I have ever written publicly about the true pain of grief. The darkest of days, where even the weight of water in the shower was too much to bear. When my skin crawled and the ache in my arms to hold my baby felt like the loss of a limb. When the only relief could be found in sleep and the sleep would only come when I was too exhausted to think. I cannot convey in words the pain of those days. I remember wanting words. Yet, no words were horrific enough to capture the pain. I do not swear, I never have. But even the worst words I knew could not scratch the surface. There isn’t even a word in the English language to describe a parent whose child dies. There are orphans and widows and widowers but no noun for those who lay their children to rest. And as I searched for a word ugly enough to sum up the wretchedness I felt, words beautiful enough to describe my baby boy also remained elusive. Perhaps that is a struggle felt by many who populate those online groups and forums. How do you express a pain so horrific in the place you are recognised as mother to your child? How do you articulate the depts of hurting when you also want to celebrate your baby? How do you find language that isn’t repressible and offensive to describe something so bitterly broken? How do you reach out and seek comfort when you want to spew barbed wire and bile and venom? How do you tame the rage and the anger to a gentle simmer to remain polite amongst people who share common ground but are, for the most part, strangers?

For those in their grief who find comfort from the beauty, but wonder if they are lost alone on an ugly path. Please know, you are not alone. There are just no words to capture the depth of the hurt just as there are no adequate words to capture the enormity of the love. For the pain and the grief run deep because the love never ends.

27Jul2014

Being Okay with Being Okay

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

On the third Friday of each month, I meet with a group of mothers. Like most mothers groups, we all come from different walks of life, but have our children in common. Unlike most mothers groups, our children do not play underfoot or interrupt our conversation. If anything, our conversation keeps our babies alive.

We are each at different stages in our grief, some of us have seen years pass and some of us have welcomed more children. In this group we are understood, in this group we are not judged and in this group we are all recognised as mothers first and foremost, no matter where our children reside. There are a few of us at a stage in our grief where our new lives feel comfortable and our loss has taken us to passions and purposes that feel overwhelming positive. This in itself is confronting. Did our babies die to provide this new direction? Did they leave so that we could learn hard lessons? How do we reconcile the immense hurt and holes in our lives with the gratitude for new friends, an expanded outlook, and in some cases, the formation of badly needed charities that provide support and research?

Around six months after Xavier died I came across an online loss support group that asked “if you could change your past, and not go through your loss, would you? Think about it carefully before you answer”. At the time, I could not conceive any bereaved parent needing time to answer. My baby, my baby back in my arms in an instant is all I could think. What a ridiculous question to pose I thought. But there were those that were further in in their grief that said that they wouldn’t change their lives. That they had arrived at a point in their journey where they had learned a great deal and had made a kind of peace with their loss. I could not understand that viewpoint at the time, but I can now. I still think it’s the wrong question to ask. An impossible hypothetical with no easy answer. When you reach a point of being okay, not with your loss, but with your life, I think it’s indicative of integration rather than acceptance and certainly not a preference.

The guilty thought “if my baby had died, I would never have met these amazing people” becomes “my baby, their life and their story, which are inextricably linked, led me to these beautiful people”.

The worry “maybe my baby had to die for me to learn this lesson” becomes “all our children teach us important things, mine taught me some of the most important”.

The concern that “my baby’s death has led me to pursue long forgotten passions or renewed my creativity” becomes “I have figured out how to parent my baby – I have created connections with my child.”

The thought “I would not have founded or supported this charity unless my baby died” becomes “every life leaves a legacy and the length of that life in no way correlates to the power or impact of that legacy. My baby continues to make an important and positive impact in the world.”

As a bereaved mother, I feel guilt over so many things. But I will not feel guilty about coming to a place of peace. I will not feel guilty about finding purpose in parenting my boy no longer here. I will not feel guilty about my life reaching a place that feels okay. I worked too damn hard to get here.

24Jul2014

Prayer Flag Tutorials for the Day of Hope

Posted in Connecting with Angel Child by Robyna

On the 19th August each year, we mark a day of hope. A day to reflect and honour our much loved babies. In the lead up to the day, Carly Marie hosts a prayer flag project. Parents and others touched by the loss of a child are invited to make prayer flags in honour of their child or children. The project had it’s birth not long after Xavier’s death. I remember so clearly sitting down and making him a flag, tears streaming, but grateful for something to do. For the first time, I found something healing to do with my empty hands. I could not stop making them. They hang on our verandah, joined by the flag I made last year and the one I have just made. As Xavier’s birthday is at the beginning of the project, each year I will make a flag for him, for hope and for healing. I am drawn to lace and fragility when I create for him. The flags reflect that. The ones I first made are a little battered and bruised – they are starting to fray. But I find them even more beautiful this way. I think it’s an apt metaphor for life after loss.

I have a sewing machine and inclination to sew. But you do not need either to make a beautiful flag.

Here are flags you might look to for inspiration.

The Paper Bag Flag
I wanted to make a flag with objects I had around the house. As this remains a bag, I have placed all of Xavier’s 2nd birthday cards within it. If you choose to make this flag, you might like to write a letter to your child and place it within the bag.

The Printed Flag
Did you know that you can directly print onto fabric using freezer paper if you have an inkjet printer? Neither did I. This flag might suit those that prefer to design on-screen than on-fabric. If you feel uncomfortable printing like this, you could also use transfer paper and iron onto your flag.

You Need

An A4 sheet of paper
A piece of cotton fabric the same size as an A4 sheet of paper
Freezer Paper (you can buy this from Spotlight for about $1.50 a meter, they have it behind the counter)
A computer
An iron
An inkjet printer
Sewing machine (optional)

To Create

Create a design on your computer that you are happy with. It might include a photo, a verse or a beautiful picture. I chose to include Xavier’s footprint and a quote that speaks to me. Keep in mind the final flag will be 9inches (width) x 12inches (height) when creating your design.
Using the A4 sheet of paper as a template, cut the freezer paper and the fabric. They should be the same size.
Iron the freezer paper onto the fabric. This article gives more detailed instructions – please follow them – I would hate for anyone to damage their printer!
Print onto the fused together freezer paper and fabric, ensuring that your print will be on the fabric side.
Peel off the freezer paper.
Trim or hem your fabric to size 9inches (width) x 12inches (height). If sewing, fold the top over with enough room to thread through a ribbon to hang your flag. If trimming, you might like to hang your flag with pegs.
I chose to sew a heart around the image. It would also be sweet to add beads or other objects precious to you and your baby.

I dearly hope your creative process brings you healing, hope and mostly, a sense of connection with your baby.

7Jul2014

Connections with my Son-shine

Posted in Connecting with Angel Child by Robyna

These will always be the hardest days of the year – his birthday, his anniversary and the short days in between. A curtain is lifted. Those days, my head space, the evocative smells and sounds belonging to this time of year, all conspire to draw him closer. The memories coming rushing back, clear and raw. My thoughts are once again full of him. And even as my heart breaks, I am thankful for the deeper connection these days bring.

It is a precious thing, this connection with my son. A considered thing, a nurtured thing.

When Xavier first left, I knew I could not relate to him as a newborn. He had become something else and I had to find a differently shaped relationship. The newborn baby on the television, the billboard for a maternity hospital, the tiny little boy being held by his mother – those things were too hard to bear. They brought me pain and I desperately wanted to sustain a relationship that was based on more than hurt. Grief tied me to my son, but something else, something stronger, needed to connect us.

I feel him in dozens of ways, and most strongly in the sunshine’s rays. It has helped me enormously to have something so constant in my life that feels like it belongs to him. To have something family and friends can hold to and let me know they felt him near. Something accessible and relatable and hopeful. I have taken dozens of photos over these past days, often intentionally of sunny rays of light. Then there are the photos that I never intended to be filled with light, but rays of sunshine still made their way in. There are the beautiful signs that friends have shared that seem too coincidental to be anything but Xavier reaching out.

We are taught to doubt the things we cannot see. We are taught to be skeptical and to close our minds to that which we do understand. But when something happens that defies explanation, when the impossible becomes your reality, new possibilities open up. When life, brand new life, is proved fallible, you have to wonder what is beyond it. If a baby can die for no reason, then is it such a stretch that their spirit stays near? If medicine cannot explain what happened to my son, why not accept the inexplicable signs and coincidences that have occurred as being from him? If I am asked to have faith that nothing could have saved him and that his brain was fundamentally flawed, why not have faith that he still lives around and in us? I have had to accept so much that seems doubtful and unreal, that accepting the things I once would have scoffed does not seem a great stretch. I do believe that Xavier’s spirit is near and real. Whether the manifestations of that are real or imagined matters little. Whether he lives on within me or external to me, he still lives on. Whether my beautiful friends remember him because they are moved by his spirit, or their compassion for me, it matters not – there is still loved expressed because he was here. I hear his voice sometimes – whether it’s my imagination or truly his spirit speaking is irrelevant – I still hear his voice. The nature of the connection does not matter, the existence of a connection is what is important. And for those whose scientific minds do not allow such flights of fancy, I leave you with the beautifully comforting words of Aaron Freeman:

You want a physicist to speak at your funeral. You want the physicist to talk to your grieving family about the conservation of energy, so they will understand that your energy has not died. You want the physicist to remind your sobbing mother about the first law of thermodynamics; that no energy gets created in the universe, and none is destroyed. You want your mother to know that all your energy, every vibration, every Btu of heat, every wave of every particle that was her beloved child remains with her in this world. You want the physicist to tell your weeping father that amid energies of the cosmos, you gave as good as you got.

And at one point you’d hope that the physicist would step down from the pulpit and walk to your brokenhearted spouse there in the pew and tell him that all the photons that ever bounced off your face, all the particles whose paths were interrupted by your smile, by the touch of your hair, hundreds of trillions of particles, have raced off like children, their ways forever changed by you. And as your widow rocks in the arms of a loving family, may the physicist let her know that all the photons that bounced from you were gathered in the particle detectors that are her eyes, that those photons created within her constellations of electromagnetically charged neurons whose energy will go on forever.

And the physicist will remind the congregation of how much of all our energy is given off as heat. There may be a few fanning themselves with their programs as he says it. And he will tell them that the warmth that flowed through you in life is still here, still part of all that we are, even as we who mourn continue the heat of our own lives.

And you’ll want the physicist to explain to those who loved you that they need not have faith; indeed, they should not have faith. Let them know that they can measure, that scientists have measured precisely the conservation of energy and found it accurate, verifiable and consistent across space and time. You can hope your family will examine the evidence and satisfy themselves that the science is sound and that they’ll be comforted to know your energy’s still around. According to the law of the conservation of energy, not a bit of you is gone; you’re just less orderly

A different kind of Birthday

How do you celebrate a birthday for a person that you can no longer see?

Invitations
There will be no carefully curated list of people who will share in your birthday. No beautiful invitations to send to friends and family. But there are those that will accept the unwritten invitation to share in your birthday and remember you. Those that miss you too. Those that grieve with us.

Decorations
There will be no balloons and streamers hung. No theme will define your day. But I have made this hanger. It reminds me of you and it decorates your brother’s room.

Presents
You won’t unwrap a train set, or open your eyes to find your first bicycle. You won’t be spoiled by those that love you with earthly gifts. But I made you this prayer flag, as I have done in the past and will do each year. It is my gift to you and yours to me.

Songs
I won’t sing you happy birthday. There will be no chorus of hip, hip, hooray. But I wrote you this poem.

Candles
There won’t be two candles atop a cake. You won’t try to blow them out with your baby breath. But I will light a candle for you and others might too.

Birthday
There won’t be a birthday party tomorrow as others might know it. But I feel your birthday to the very depths of my bones. A birthday is for letting someone know how much you love them. And I love you forever, my baby boy still.

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.

8Mar2014

Becoming the New

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

I’ll tell you a little shared parenting secret. Children don’t get easier with age. You just get better at parenting. It starts to sink into your skin and becomes an integral part of who you are. Children change your values, your viewpoint and your priorities. As a first time mother, I was faced with a lifestyle shock, an identity crisis, a love more intense than I had ever imagined and a fatigue I would never have guessed existed. All this whilst figuring out how to mother a tiny dependant being with no eloquent way to express his needs. It is a lot. Sometimes I think we forget just how much. But eventually I was reshaped and settled into motherhood. I no longer needed to analyse it or agonise over it. It simply became me – a much quieter and more assured part of myself.

The grief I felt after losing Xavier was the inverse of the joy I felt when I first held him. Where there was once hope, there was despair. Where there was joy, there was only pain. And where a baby once was, a huge, yawning, aching gap. But settling into grief and having it become a part of who I am is, in many ways, like the gradual acceptance of motherhood itself into my psyche. At first, there is violence and confusion. A world rocked and emotions displaced. People would tell me that the death of my child would change me – that it was inevitable. And I would nod and inside I would scream “No – I don’t want it to change me, I don’t want to lose who I am.”

“I will not let this loss define me,” became a mantra, an anthem, a steely promise. But children change you. Experience changes you. Xavier’s life changed me and Xavier ‘s death changed me. In retrospect, I was clinging to the idea “I won’t let this loss defeat me”. The darkest days of grief drag you down and under. Leave you gasping for air. And you fight. You literally fight for your life. The length of that dark time varies from person to person who has experienced the death of a child. But the weight of it, the almost unbearable weight, seems a consistent experience. Gradually it eases, the grief becomes gentler and the memories less intense. The double edged sword of distance, granting a measure of peace whilst at the same time blurring the memories of a much loved little face.

But the fact of his absence remains. That fact is no gentler. I have grown to deal with it in a gentler way, but the bald facts remain as horrific as they did at the start. That will never change. When he left he set my life on a different course. Everything changed in that moment. And forever I will be bereaved mother. He is not forgotten. He changed everything.

Not long after Xavier died, a dear family member gave me a silver X. I had his handprint stamped on a silver heart and I found a sunshine pendant. Those three charms hung from my neck and I vowed I’d never wear another necklace. But as time went on, I felt the need to wear it constantly lessen. Xavier had become so much a part of me that the physical talisman seemed to lose the grave importance it once held. Xavier moved into a safer place within my soul. A quiet and assured place that would never give him up. I still wear the necklace sometimes – now not so much to feel connected, but rather than to wear something of him with pride.

I believe he is safe within my story and my story safe within his. He has thread himself through the fabric of my narrative and the narrative of others. He will be remembered. He will live on. For my words belong to him and when I write, it feels like his words whispered in my ear.

5Mar2014

Mothering Tutorial – Using Mac’s Pages to create a custom shape filled with text

Posted in Connecting with Angel Child by Robyna

One of the primary ways I still mother Xavier is through creating things. Whether I write, sew or scrapbook, I feel solace when I set aside quiet time and make beautiful things in his memory. It is a way to connect and reflect and most of all, continue to make room in my life for him.

I wanted to share how I made this text butterfly so that others might be able to create something similar for their loved ones gone too soon.

I used Pages on a Mac, and my instructions will be specific to that program, with an assumption that the reader is relatively well acquainted with the program. This blog post explains how you can do something similar in Word – http://irishitalianblessings.com/2013/02/add-text-to-shapes-in-microsoft-word.html

So here, goes:

Firstly, find an image that has a clear outline that speaks to you – perhaps wings, a heart, a flower, etc.
Save that image.
Create a new pages document and insert the saved image.
Choose the free draw tool from the shapes menu. Trace around the edges of the image. To soften the lines use Format > Shape > Smooth Paths.
Select the image and delete it. You should be left with the shape you have traced
Find the lyrics, verse or prose you want to form the text part of the image. Copy them to the clipboard and then paste into a new pages document.
Find all the paragraph markers and replace with a space using the find tool. Copy the resulting text.
Back in the document you originally created, double click on the shape and paste the copied text. You might need to paste it a few times to fill the space.
Click on the outline of the shape and choose no fill as the line colour.
Click on the inspector and go to text. Justify the margins. You can also alter the character ligature and line spacing here.
You may like to change the font. If you don’t like the options available, download a font you like. There are some great font resources on the web, I like fontspace the best. You may like to pick out words and phrases that mean a lot to you and change the colour, font, bold or size. To quickly change the size in pages, select the word/s and press control and +.
To add the name and dates, create a text box. Change the properties to floating. Place this onto the shape and type your names , dates or other messages.
Edit the font size, colour etc. to your liking.
Save the document. You may like to export to a PDF for easy printing.