When grief comes unbidden

I was upset yesterday. As much as I tired, I could not keep the tears from falling. As much as I tried, I could not bring myself back from the brink. The tears were a disproportionate response to someone else’s actions.  I was with friends and embarrassed at the emotion I could not hold onto. The emotion that was unfairly spilling over into their afternoon.

In the objective light of the next morning, I understand the combination of factors that led to those tears.  Four hours of sleep the previous night. Four or five glasses of bubbles. A whole day dedicated to mother’s day, and in particular mothering boys. Hearing the heart break of another mother who has two boys with her and one in heaven. I was standing on an emotional ledge and it would have taken very little provocation to push me into tears.

The dark stain of grief no longer touches my every day.  In the early days after Xavier died, there would be good minutes amongst the bad. Then good hours amongst the bad. Eventually, good days between the bad. And that continued to stretch, until the good days outnumbered the bad. Nowadays, the bad days are far and few between. But they still hit. And the ferocity with which they hit does has not reduced exponentially in the same way that their frequency has. It’s one of the strange things about grief – you imagine that it continues to reduce, but it doesn’t – it flares.

Those flares can be dis-orienting. I find myself confused, searching for why my emotions are suddenly askew after a period of gentleness.  It always takes time for my head to catch my heart. And even as it dawns on me, it concerns me. I don’t want to use my grief as an excuse. I don’t believe that my grief over my son becomes a blanket excuse for bad behaviour.  I don’t want to use it as a cop-out. And I don’t want my friends and family to immediately assume that whenever I am emotional that it is tied to Xavier.

Grief is a double edged sword. On the one hand, I feel that I can survive anything after living through the death of my son. That nothing can touch me after that. That every other potentially upsetting thing fades into insignificance. On the other hand, when grief has left me raw, then I am emotionally vulnerable, unable to access the resilience that his death gave me.  It’s as though that heart scar has been pulled away, red and raw again, sensitive to the slightest touch.  At other times, that scar tissue has hardened to a point that I don’t even feel pressure against it.  But I don’t always know which emotional state I am in – sometimes the scar test is what reveals it to me. When mother’s day approaches, and with it birthdays and anniversaries soon after, I can presume a level of emotional tenderness.

And hope those around me understand.

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The season of grief – Mother’s Day and beyond.

My beautiful Dad created this image of all three of my boys.

My beautiful Dad created this image of all three of my boys.

My annual season of grief has begun. It starts with the memories of two little boys whom I never met, but hold dear. March & April saw their respective anniversaries. I remember those two little boys always. But on the days belonging to them, I spent some time thinking about them and their dear mothers.

Since I lost Xavier, ANZAC day has gained a different kind of meaning. I remember the first ANZAC day after I lost Xavier. For the first time in my life, I did not think of the diggers and their sacrifices during the minute silence. I thought instead of their mothers, their children and the memories that would never be made. I thought about grandchildren who would never been born and worlds shattered that had to continue turning. I have no experience of a battle field. I don’t know what horrors lie there. I don’t pretend my grief is the same as the mother who loses her adult son to the bloody futility of war, but I know a little of that pain. I know how life cracks when a parent buries their child.

May holds Mother’s Day and duality of emotions. Elation that I get to celebrate my two boys on earth and an aching sadness for the one not here. Doubt as I receive presents heralding me as “World’s Best Mum”. For clearly, I am not. The World’s Best Mum would have saved her child. The happiest days can be the hardest. Pressure to be jovial for the children in your arms and pressure to grieve harder for the one not there. Always trying to make space for all three of them, and not always succeeding – they live on such different planes. Mother’s Day will see a six year old attempt breakfast, a nearly two year old smother me in kisses and a nearly three year old visited at a gravesite. Joy and hope and love and sadness all intermingled with an intensified poignancy that only occurs on certain days during the year.

June will see Xavier’s birthday and July will see his anniversary. Three years. How can that be? My tiny little baby, three years old. Three year olds are joy personified. They are full of verve and life. They are the antithesis of sadness. Three seems to have very little to do with my Xavier.  My forever newborn son.

In Australia, Mother’s Day is the second Sunday of May. It can be one of the hardest days in the year for a bereaved mother.

Here is what I have found helpful to get through it:

  1. If it’s important to you that your partner get you something on behalf of your child, let them know. I know you don’t want to have to do that, but it’s better than seething all day if it doesn’t happen. They may not realise how very important it is to you.
  2. Let another bereaved mother know that you are thinking of them. Carly Marie does a range of beautiful cards specifically for bereaved mothers.
  3. Set aside some time to spend with your child. Let your loved ones know that you need that time.
  4. Be prepared for the day to be hard. I am always surprised by how difficult Mother’s Day is.
  5. Step away from social media if seeing pictures of perfect families is all too much. You don’t have to torture yourself.

Be gentle with yourself this Mother’s Day.

 

My normal is different

Over the past few weeks I have met quite a few new people – both online and in real life. There is always the hesitation over when and if I reveal how many children I really have. The pause before I tell my whole story and the silent steeling of my heart as I await a reaction. People are kind. I have found this to overwhelmingly be the case. But I always wonder – what do they think of me now? How has their perception of me change now that they know I have a child who was lost to SIDS?

Before Xavier died, I knew no-one who had lost a baby to SIDS. In one of those cruelly ironic twists of fate, my mother told me a few days before Xavier died how she had bought a red nose pin for SIDS & Kids. She said “Can you imagine it?”. I scoffed and said “that would never happen to our family.” And I truly believed it – I did not think SIDS could be a possibility within our family. I wonder if other people think the same thing. I wonder if, behind the kindness, there remains a belief that a person who loses a baby to SIDS must have done something wrong. I would instantly forgive anyone who thought that, but it does make me hesitant to talk about Xavier’s story. I have been through the guilt and the judgement and I have arrived on the other side. Most days, I no longer blame myself. But when I tell the story to someone new, when it is fresh and shocking to them, I do fear judgement. My story isn’t a pleasant one to tell or to hear. My normal is different.

I have placed Xavier’s story in the world. I have written about him here and in other places. A quick google of my name will reveal Xavier’s story before my own. As someone who has just started a new business, this worries me. Will people judge me before they know me because my son died? Will they assume that I am less capable due to grief? Will the words that have bled onto internet cause me harm in the future? I think any blogger that writes about intensely personal things faces that question. What will people who don’t know me think of me? What image have my words constructed? Will I be seen as brave and helpful? Or as an over-sharer who should have taken more care of her online persona? If Xavier hadn’t died, I may not have returned to the embrace of words. If Xavier hadn’t died, my google search results would look very different. If Xavier hadn’t died, I would be travelling a different path and perhaps in a different career. But he did die. And I needed those words.  And I wanted to share those words with people who felt something they could not articulate. I wanted people to feel less alone. Because their normal is different.

My littlest baby is growing up fast. Toddling and talking and spending time outside of my care. He is happy and thriving and he and his brother are the lights of my life. And I am filling the time busy-ness. I am finding myself feeling anxious about what I have set out to achieve. And I berate myself for feeling this way. I feel as though I waded through the raging seas of early grief and managed to swim. That I should be able to conquer anything. But I was careful with my mental health in those early months. I exercised. I watched what I ate. I slept. I talked things out. I took time to appreciate all that was beautiful. I have let many of those things slip. And keeping my mind healthy needs all those things. Grief has no time frames. You don’t wake up and find it’s over and done with. A little over two years ago my normal changed. And it’s still different.

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.

What New Year means when your child has died

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.

The Gift of Time

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

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.