Christmas when one is missing: Ideas to get through it

IMG_8571As 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.

IMG_8577This 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.IMG_3761
  • 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.

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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.IMG_4176
  • 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.

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The ones who dance to a different kind of music

the round pegsMany of the days following Xavier’s death are a blur. Others, I remember with clarity. I think it was a month or so after we had said good-bye and I was playing in the park with Isaac. It was quiet. A school day. We had the swing set to ourselves before a group of young adults arrived.

They were accompanied by two carers and it was clear that these were kids with special needs. Amongst them, a girl around fifteen who would never reach a mental age beyond about three.  A boy, with no control over his body, all limbs like fourteen year old boys are.

It was the second time in as many weeks that I had encountered such a group. It felt like the universe was trying to tell me something.

The carers approached me nervously and asked if I minded them being there.  Apparently there had been issues in the past.  Of course we didn’t mind I said. And I smiled and tried to convey all the things: support, acceptance, understanding (although how could I possibly understand). And I felt the other things: relief my living child was healthy and able-bodied, pity, embarrassment at my own discomfort, curiosity about whether this was ever Xavier’s fate. Heart-broken to see the fifteen year old girl squeal in utter delight when pushed on a swing designed for a much younger child. Helpless as the teenaged boy tried to engage me in conversation when I couldn’t understand what he was trying to say. He said something. I said something back and hoped it was right.  This continued for a little while and I started chatting to one of the carers.

They offered relief for the parents of the kids – a few hours for those parents to regroup and rest.  And as I watched these wonderful carers with their kids, I couldn’t help but wonder, if Xavier’s story had been different, if he had lived but with a disability, would  I have coped? Would I have been strong enough? It is a ridiculous question.  If someone had told me that I would not only survive but eventually thrive after the death of one of my children, I would not have believed them.  We do what we do, not because we are strong but because strength is the only choice available to us.

If Xavier had lived but with severe brain damage, I would have found the strength just as I found the strength to cope with his death. I remember holding his hand before receiving his fatal diagnosis. He was tied up in machines and his soul was already passing, but I did not know it then. I whispered to him, I know you’ll be a little different.  But that’s okay. I will love you no matter what and we will make it work.  I still clung to the idea that he could be saved, maybe not all of him, but some integral part of him would remain with us.  I would have done anything for that to be the case. But that was not his story.

Within my circle of family and friends, there are children with special needs. Some are immediately apparent and others are not. At times I am not sure what is more difficult: the visible or invisible differences. There are varying degrees of help needed and help offered. I see the parents of these gorgeous kids go into bat every day.  They advocate for their children, champion them, raise awareness and challenge pre-conceptions. I see them worry about their child that doesn’t quite fit into the societal norm, the round pegs and the square holes. I see them worry about their other children and whether they are doing the right thing by them. I see them and I am in awe but they say they are only doing the best they can – and what else can they do? They say they would not have chosen this path if it were offered them, but now they cannot imagine a different way.
I remember being in the thick of grief of wishing for a day off.  I didn’t want the grief to go away, it was too much a tie to Xavier. But I just wanted a day, one day, when I wasn’t a bereaved parent. One day without the weight.  One day of freedom. I imagine that parents of kids with special needs might feel that at times.  I know that they love their kids with heart and soul and mind but they receive little respite from the worry, the struggle, the pressure.  I thank those carers I met in the park for the gift they give to parents. Those moments to breathe.
And for those parents of children who stray from the well-trodden paths, who dance to music I can’t hear and march to a different drum-beat, thank you for what you do.  For your love and your bravery and for making your childrens’ lives beautiful.

Permission to Grieve the Other Things

FlowersToday I said good-bye.  Good-bye to the workplace I have spent fourteen years within.

 

It is the right time. The right thing for me now.  Time to spread my wings and try new things and hopefully fly. I am going to set up my own consultancy business.  In truth, it’s something that I have been considering for some time. If  Xavier had lived, it may be a step that I would have taken earlier. It is exciting and terrifying and wonderful.  And I have been focussing on those emotions.

But it is also sad. Sad to be leaving a place I know so well, a place that has shaped me, the people who I consider friends. People who showed incredible love and support when we said goodbye to Xavier.  People I have, quite literally, grown up with.  I have not given myself time or permission to dwell on the sadness.

When there are two sides to a coin, I always choose to spend time with the positive.  But there is something to grieve.  Sadness amidst the excitement. And, despite the fact that no sadness will ever compare to the loss of my son, I need let myself feel it. I am sad to leave behind this part of my life.  As I hugged those I count as friends, not just colleagues, there was melancholy.  Of course I would be back to visit, but as a visitor. I would no longer be a part of the team.

Sometimes it feels as though surviving the loss of my son introduced a new contract on how to live life.  That I have no right to be sad about anything other than Xavier. That I must focus on the positive at all times.  That grief, not directly tied to him, is ridiculous and insignificant. But that’s not how life works. There will be bittersweet experiences in my future.  There will be sadnesses, that will pall compared to the loss of my son, but will be sad nonetheless.  And I need to give myself the permission to feel it.

Poetry in Grief Thursday – The Broken People

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Every Thursday I am sharing a poem I have written for Xavier.

Today I wanted to share a poem that was published in the beautiful book Three Minus One.

I was thrilled and humbled to be a part of this collection of stories, essays and poems about the loss of a child.  You can buy the book here.

This poem is about the change that occurs when you lose a child.  The person you become. The fragility and the strength that co-exist.


The Broken People

I am one of the broken people

The people who are hollow

The people made of glass

The people made of sorrow

 

You might not know it

Think me the same as you

But look a little closer

You’ll see straight through

 

I am weightless, groundless

I am battered, I am broken

I am bruised, I am tired

I am words left unspoken

 

 I am acting when I’m smiling

I am pretending even now

Appearing to be living

When I have forgotten how

 

I go through the motions

I wake up every day

Do the things that need doing

Say what I am supposed to say

 

But this vessel is broken, empty

It is cracked beyond repair

And sometimes when you see me

I have vanished into air

 

I am living on the outer

Each breath hangs by a thread

I am half way between the living

I am half way to the dead

 

One day I’ll find my feet

Feel the earth and remain

But even when I make it there

I’ll never be the same

 

Because now I am so fragile

Heart shattered on the floor

And ‘though I am made of glass now

I am somehow stronger than before

The Most Terrible Decision: Cremation or Burial

Image Credit Robyna MayWarning: This article talks about the cremation and burial of infants. It is intended for those that are either faced with this terrible decision or are wondering whether the decision they have made is the right one. It is not my intention to offend anybody, but I realise these are sensitive subjects.

After Xavier died it felt like I had fallen down Alice in Wonderland’s rabbit hole. Everything was wrong and out of place and I was faced with one horrific decision after another. Would we consent to an autopsy on our baby? What colour should his coffin be? Would I speak at his funeral? But of all the decisions, the one that I found the most vexed was whether to bury or cremate our darling child.

In the wake of his death, I was given information from SIDS and Kids. Numerous booklets with information on grieving, on support and on infant funerals. These little booklets offered advice and quotes from parents who had been through what we were living. One of those parents revealed that they had decided to bury their child because they wanted a place to visit. That resonated with me and we decided to bury Xavier. It is a decision that I have revisited, wondered about and never been entirely sure whether I made the right one. I wanted a place that was his, but then I didn’t want him alone at night. After all his little body went through, I could not commit him to the fire but I now wonder if the earth is any kinder.

If you have come to this place because this is a decision that you are facing: how to say goodbye to your precious child, then I extend my love and my deep-felt sadness. I wish I could take away your pain. I wish I could deliver your child back into your arms. But all I can offer is my experience and the hope it may help you.

If this is a decision you are making or a decision you are regretting, then know this:  There is no right decision. When the choice is between fire and earth rather than holding your baby close, there is no decision that will feel right.

These are the reasons I chose to bury Xavier:

  • I wanted a place to visit that was separate and his alone.
  • I could not face the thought of cremation.
  • I wanted a place that would be his forever – a small patch of earth that would bear his name for all eternity.
  • Others in my family have been buried in the same cemetery as Xavier.
  • I wanted a place where others could visit Xavier.

Often when I visit Xavier’s grave, there will be small ornaments, toys or cards left by his tombstone. Evidence that he is still a part of the lives of my family and friends.  It is a joy to see these small things.  There is a sense of tradition and ritual that accompanies visiting his grave on his birthday, Christmas, Mother’s Day and Father’s day. On the flip-side, I often feel guilty that I do not visit him as often as I used to. There is a sense of duty to that small patch of earth that I feel I don’t always live up to.

These are the reasons that others I know chose cremation:

  • They want their baby in their home.
  • It is important to them to hold ashes in a special urn, or piece of jewellery.
  • They wanted to scatter ashes in places sacred and special.
  • They could not face the thought of their baby alone in the earth.
  • They wanted to be able to take their baby with them, should they move house or overseas.

If you choose burial, here are some ways to honour your baby in your home:

  • You can request some of the sand used at the burial and place this in a special urn or piece of jewellery. If you buried your child some time ago and crave this, you can use some of the soil that covers their gravesite.
  • I personally believe that the essence of Xavier does not reside in his remains. His love, his warmth and his presence is felt in the sunshine, heard in the sound of his brothers’ laughter and seen in the love our family shows each other. There are places in our home that are dedicated to him. I feel him in those places more-so than his gravesite. You can create spaces in your home where you feel your baby.

If you choose cremation, here are some ways to honour your baby outside your home:

  • You can request to have a plaque erected at a cemetery in honour of your baby.
  • You can choose any sacred space that allows you to feel your child’s spirit and dedicate it as “their place”.  Perhaps a beach or forest. You might visit that place on special dates.
  • You can talk to your local council about building a public garden, special seat or some other wonderful thing in your child’s memory.

Explaining cremation and burial to young children is difficult.  Carly Marie has a beautiful way to describe cremation to children.   My eldest son struggles to understand why Xavier’s body is buried deep within the ground when we talk about him being in heaven and all around us.  This is what I tell him:

Each of us has both a body and a soul.  Our bodies provide a home for our souls.  Our soul is who we are, what makes you YOU – every soul is unique. Our bodies are not made to last forever.  Sometimes they get sick.  They get old.  Some people have to lose their bodies earlier than others.  This is what happened to Xavier. But our souls do not get sick and they last forever. It is harder to understand a soul without a body, but it doesn’t mean it doesn’t exist. Xavier’s body went into the ground, but his soul is all around us and a part of our family for always.

1 in 4 – Why it Doesn’t Compute

This month is infant and pregnancy loss awareness month.

Every October I see this:

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I am going to be completely honest. It doesn’t sit right with me. I lost my baby to SIDS. That was a 1 in a 1,000 chance.

Yes, I am a part of the 1 in 4 statistics but it is a very, very thin slice of the graph Xavier falls into. His death was not common (Thank God). What we went through does not happen to a quarter of the Australian population.

And so I don’t feel comfortable announcing I am 1 in 4. I know the aim of the campaign is to start people talking about the taboo subjects of miscarriage, stillbirth and infant loss. I know it’s about solidarity. I know there are no ladders in loss. I know that every one of the children remembered this month, and every month, is precious and loved – no matter their age or development. I know all of this and I support it, but I recoil when Xavier’s death is placed on the same shelf as miscarriage. I feel like a traitor even writing that. Within this community of loss we support each other equally and fully. I feel privileged to know women as mothers when their motherhood often goes unacknowledged. It is a gift to know their children through their love. I know they have their own struggles.

And so do I. And they are different. As much as I acknowledge that there is no comparison in grief, no more than, no less than there is also no the same as.

The loss of my son to SIDS is not the same as a miscarriage. It is not the same as losing a child to stillbirth. It is not the same as losing an infant to accident or illness. It is different. And that needs to be acknowledged. Each of those losses is unique and has its own pain. Not more than. Not less than. But apart.

That uniqueness feels lost when I become 1 in 4.

It was only a week or two after Xavier died. My very good friend, who has had more than her fair share of miscarriage heartache, and I were talking. I was trying to put Xaviers death into perspective. I said “perhaps there is no difference, perhaps his death is like a miscarriage”. I was struggling with my loss and honoring her loss now that I had a different perspective and understanding. She gently put her hand on my mine. She looked me in the eye and said “it’s very different.” That was a gift. The understanding that this pain held a different weight, that it was a different shape.

It is an understanding that doesn’t always occur within the loss community. Every one holds tightly to the recognition of their motherhood. I understand why. It is often the only place that motherhood is recognised. There is a fear that acknowledging the differences in loss would lead to a reduction in the recognition of motherhood. But we are all different. We mother differently. Our losses occurred differently. Our journeys take different paths. We share so much in common, and we hold that up. But I think it has to be okay to talk about the differences too.

This pregnancy and awareness month, I am 1 in 4.

I am 1 in 1,000.

And I am the only mother to my son.

 

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

Photo Credit Robyna MayI 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.