Easter – when love triumphs

Easter is approaching. The time of the year we celebrate love and life triumphing over death. Even in it’s pagan incarnation Easter is about welcoming the spring, a time of growth and newness. A time for birth and rebirth. The tender shoots of hope finally peeking through the cover of desolate winter.

After Xavier died, I wished for resurrection. When people would describe Mary as a grieving mother my heart would harden a little. For she had her son returned to her. She was given the miracle every bereaved parent begs for. Xavier was never returned to me in a physical sense, but the lasting relationship we share is a form of love triumphing over death.

In the yoga class I attend with Elijah, our instructor will often tell us to take a moment to nourish the bond between mother and child – the most un-breakable of all bonds. Whenever she says that, my mind wanders to Xavier. The bond between baby and mother cannot be severed. Not even by death. I was robbed of the physical relationship I had with Xavier by SIDS. But I could choose how much was stolen. The heavy burden of grief and the constant longing for what could have been threatened our continuing relationship. It took time to nurture and navigate a different kind of parenting but I am learning. I feel him close.

There are beautiful people and purposes in my life that would not have come to me if it wasn’t for Xavier. For a while I would question my attitude towards them. That I could not feel gratitude for things that existed due to Xaviers death. I feel differently now – a slight change of perspective. The positive things in my life that have come about because of Xavier are part of my relationship with him. They are not causally linked to his death, but rather his life, lived in the short span granted to us. There are so many beautiful things in my life because of him – not because he died, but because he was here. I do not believe that as a parent you can every truly accept the death of your child. Acceptance is popularly heralded as the last hurdle of grief. I do not think it is true. I think you reach a stage when you integrate the death of your child within your heart and your life. Where you can come to a point of resolution. For me, it was when the magnitude of love I hold for my son finally over-shadowed the magnitude of my pain. That took time and it took hope and it took faith.

And now these three remain: faith, hope and love. But the greatest of these is Love.

I hope Easter brings you all three and the last in copious amounts.

Parenting in Absentia … the guilt and the reality of parenting living children whilst grieving

I remember the first time I ever paid for an iPhone app.   We were in the hospital not long after hearing the devastating news that Xavier would not be coming home with us.  Isaac was demanding attention I could not give.  I turned to technology as baby-sitter.  I relinquished  previous rules, gave him my phone and in a metaphorical sense, I never really asked for it back.

In those dark days after Xavier died I could not give Isaac the parenting he deserved.  He heard yes too often to requests for things when I had no fight.  He heard no too often to requests for my time and attention when I had none to give.   My wonderful sister in particular stepped in and looked after Isaac when I could not.  There was a period of time when I was completely absent as a parent.  My previous approach to parenting – to be present, to be fun, to be involved, to say “no” but then redirect attention to some brilliant new game or activity – all of it impossible.

Even in it, I knew I was being unfair to Isaac. I felt terrible guilt over it, yet I had no capacity to fix the situation.   He was never phsycially neglected,  but I feel like I missed the months of his life that followed Xavier’s death.   Like everything else, I went through the motions, whilst my mind was elsewhere.

Even as the darkest fog of grief lifted, my parenting had changed.  I was more permissive.   Isaac’s short term happiness, and even compliance, more important to me than the longer term effects.  It has been a hard Pandora’s box to try and close.   With the advent of school, some behaviours have crystallised as being of concern.   I look back to those days of absent parenting and wonder if I am now reaping what was sown.   And then I ask myself whether I am using grief as an excuse?

Most children go through a period of time when their parents’ attention and time for them contracts.  Whether it be a new baby or return to work, there comes a time when the best of parenting routines come unstuck.  And Isaac is certainly not the only five year old to be a little crazy, prone to the occasional tantrum, unhappy with the word “no” and fond of fighting games.

I can spend time with my guilt over my absent parenting.  I can beat myself about it and wish things to be different.   Or I can choose to change our present behaviour into something more positive.

So I have decided to do the following:

  1. Every morning, we will dance to William Pharrell’s “Happy”.  You cannot help but start the day on a positive note with that song in your head.  And it was the first song Elijah clapped to.  So it must be good.
  2. Every morning, we will talk about our intention for the day.  We will spend a moment or two discussing what positive thing we want out of that particular day.
  3. The Star Wars, the Ninjago, the Chima – they will no longer be a part of our week days.
  4. Because I am taking away something important from Isaac, I want to give him something.  We will work on a project each week.  It might be an art or craft project, a building project, or something else.  But we will do something creative together.
  5. We will start each day with some gentle yoga.  Every week Elijah and I attend a yoga class.  I might go into that class wound up and anxious – worried about various aspects of my life.  I come out of that class and I am no longer worried.  My problems have not magically been resolved, but my perspective is more realistic after spending time connecting my body to my mind.  If Isaac and I spend some time with yoga, I think it will help us both.

At then end of the day, children are enormously resilient.  My parenting in absentia will always bother me more than it has Isaac.

For those parenting living children and living in the thick fog of grief – be gentle with yourself.  You can only give what you can give.  Somedays that may not be very much at all.  That’s okay.  You are an amazing parent – you have made the choice to still be here with your living family.

For all parents, we can’t be perfect each day.  We can do our best each day.  Some days are going to be better than others, and even when it all goes wrong, there is always tomorrow to look forward to.

Becoming the New

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.

The things that stay the same – Mothering after loss

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Motherhood is a strong bond.  Not even death can sever it.   And there are certain things about mothering a child no longer here that are exactly the same as mothering a living child.  I wanted to write a list of them.  To provide comfort to those also missing their children.  To let those that surround the grieving know how important this most invisible of motherhood remains.

1. You love them a little more each day
The first moment I held Isaac, I could not imagine my heart could accommodate any more love.  I was bursting with it.  But each day went on and each day I woke up surprised to find I loved him a little more.  It was the same with Xavier and now with Elijah.  But loving them a little more daily does not cease with death.  Every morning after Xavier left, I loved him more than the day before.  In particularly that first year, where the mounting love seems exponential is its growth.  That love that begins when you learn you are pregnant, expands with each scan, each kick, swells when you hold them for the first time, grows each time you even think of them.  It does not go away.  I do not miss him less each day, I miss him more.  I do not love him less each day, I love him more.  And this is perhaps the crux of why it takes a very long time to arrive in a place of peace after losing a child. The passing days do not take away the hurt.  For the first few months, they only added to it.  Just as I do his brothers, every day I love Xavier a little more.

2. You worry about them
I worry about Xavier.  Worry if he is happy.  Worry where he is.  In the early days of grief I felt that if I just knew where he was, just knew he was okay, the pain would be so much more bearable.  I worried about burying him.  That he would be alone at nights.  I worried about leaving him in the hands of the funeral home.  Worried that they would treat him tenderly.  I worry that others won’t treat his memory as gently as I do.  As he has grown, and my understanding of him has changed, I worry less.  But, just as I do with his brothers, I will always worry about him.

3. Sibling rivalry and jealousy still exist
Whenever I make Xavier something, Isaac wants me to make him one too.  The Christmas after Xavier died, I made him a stocking and Isaac immediately wanted one.  If I buy a toy or ornament for Xavier’s grave, Isaac wants one for himself.  There are some things that bind brothers, no matter how far apart they reside.  They will always be brothers, and they will always demand the fair share of my attention.

4. You get mother guilt
I often feel that I am not a perfect mother to Isaac and Elijah.  I sometimes watch other parents and I am concerned that I am not measuring up.  I have guilt about certain decisions.  I watch other bereaved parents and they way they honour their children.  Through amazing creativity.  Through inspirational fund-raising.  Through words and deeds.  And I wonder if I am doing enough.  But how can we ever feel we are enough for our children?  I will never reach it for Isaac or Elijah.  And I won’t for Xavier.  Because I want to be perfect for them, and I am imperfect.

5. You are proud of them
Every parent is proud of their children.  I so love watching new parents with their firstborn.  The absolute pride is tangible.  They are walking a well-trod path but they act like the first people to discover how amazing starting a family is.  I know we did.  Parents want to share photos, tell stories about their children.  It is no different when your child lives somewhere you cannot go.  I share photos of a beautiful, living Xavier.  But there are those whose only photos of their precious ones are after they had passed.  How privileged I feel when I get to see those photos and share not in that parent’s grief, but in that parent’s pride.  I feel proud of what Xavier has accomplished through his journey.  Each of my boys will do amazing things that will make my heart soar with pride – the two on earth and the one in heaven.

I parent each of my boys according to who they are and what they need.  But I will always be mother to each and love them to eternity.

When the hurting eases

There have been times in my grief that I have been jealous of the way others are grieving.  People who could forget for that split second before they fully woke that their lives had been shattered.  That little tiny window of innocent bliss.  That has never been my experience.  I would wake, every morning, fully aware of Xavier’s absence.  My dreams bereft of his presence.  There was no sharp blow each morning, there was a dull and continuing ache.   And then one morning I awoke, maybe two or three months after his death, and I felt nothing.   I probed at memories, like a child wiggling a tooth, coaxing the tears and the emotion back.  Nothing.  Not even an emptiness.  Just a complete absence of emotion.  I was perplexed.  Was this it?  Was I “over” my grief?  Was I “better”?   It was not until a few weeks later, after the tide of grief had pulled me back in, that I realised this was my mind giving my heart a rest.  Grief is incredibly exhausting, hard, tiring work.  It leaves little energy for other things and eventually, my body claimed the rest it so craved.  At the time, I couldn’t conceive how my intense grief had simply disappeared.  And it made me uncomfortable.  The tie to my son severed.  Yet another thing taken from me – another silent thief in the night. I found myself jealous of those who were clearly in the dark depths of pain.  I knew how bitterly that hurt, but at least it kept my son close.   I was not okay with this version of okay.

Now, I find myself in an entirely different phase of my relationship with Xavier.  And, surprisingly, it is okay.  It’s never going to be what I want it to be – but that goes without saying.  But, I can genuinely smile and laugh, without guilt.  Increasingly, I feel Xavier in the love and laughter of my family.  He has become one with that love – woven tightly into its fabric.   Christmas Day, my husband and I visited Xavier’s grave.  I waited for the inevitable rush of emotion.  Being thrown back to the day we buried him.  Wanting to hurl myself into the earth to be with my son.  That emotion didn’t come.  And as I stood, tinsel around tiny graves glistening in the sunshine, relentless heat searing the little christmas trees, I realised, Xavier was no longer there.   Xavier was back with my family.  He was around the Christmas tree.  He was the joy in the season. He was the hope in shiny, little eyes.  He was the promise in chubby little hands tearing at wrapping paper.

Is this healing?  Is this the resolution of grief?  Can I close a chapter or wrap everything up with a big, shiny bow?  I think it is healing – I think it is a changing relationship with my son and I think that’s a positive thing.  But I worry – how is that perceived?  Do people think I am okay with the fact my son died?  Do people think that I am stoic and brave?  I am okay.  But I am not sure if I am okay with being okay.  I am not okay with how being okay might be perceived.

We wade through grief, waiting desperately for the day when peace will be restored to our hearts.  But are we ever prepared to give up what might lead to that peace?

Little Xavier, as I think of you this Christmas season, I feel your comfort around our family.  I try not to think of you, eighteen months old, tumbling around the Christmas tree.  For that is not you.  That memory belongs to someone else’s child and motherhood.  To think of you that way is to invite pain.  Instead, I catch glimpses of you in the twinkling lights, in the shining eyes of your brothers, in the embraces of family and friends and the very essence of Christmas that I once thought was lost forever.  Merry Christmas little one.

Making the rainbow connection

I am not the first loss mother to be consumed and confused by the place of a rainbow baby in her family.   This beautiful gift that I have paid the highest of prices for.    I think the crux is the confusion is this:  you learn things in grief – precious, beautiful things.  We sometimes call them the gifts of grief. But every angel mother I know would gladly give each and every one of those gifts back to hold their baby again.  There is nothing you can gain in loss that tips the balance in  favour of saying good-bye.  And then another child comes into your life.  Suddenly, there is something borne of loss that is so precious that it gives you pause to reconsider.

No one is going to knock on my door and offer my Xavier back in exchange for Elijah.  I am never going to have to make that choice.  And yet there is still guilt surrounding the presence of Elijah at the expense of Xavier’s absence.   My love for Elijah will always be tinged with a longing for Xavier.  His milestones, more so than Isaac’s, paired with wondering if Xavier’s would have looked the same, been met at the same time.  And as I am granted longer and longer with Elijah, my feelings for him intensify and evolve in a way that they never had time to with Xavier.

In the weeks following Elijah’s birth I would look at him and could not fathom how I survived the loss of Xavier.  Each feeling was intensified in those weeks – the joy, the love, the fear and the grief.  Even now, I think I could not survive if we lost Elijah.  And that thought feels traitorous – could  I survive the loss of one child over another?  Am I, in some way, choosing one son?  Loving him more?

Of course, it would be possible to fall pregnant four months after Xavier was born had he lived.   Just terribly, terribly unlikely. I was breast-feeding and two children had always been our plan.   Whilst now I look at photos and think of Xavier as missing, in a way that’s disingenuous – in reality it was never the way our family would look.

And yet, how often do our families end up the way we planned?   Those that had sworn to no children may end up with a family of six.  How many third children are born in the hopes they might be a different gender to the first two?  Accidents occur frequently.   Do the mothers in those families agonise over the children they had not initially planned on and wonder at their place in the family?  Or do they not even pause to think it over – just accept the beautiful gifts bestowed on them and the fluid shapes of family over time?

When I think about the shape of my family – my boys – this is what I picture: Two boys, one much littler than the other, their faces turned towards the sunshine.  Rays of light gently settling around them, and both of them with an understanding that this light belongs to their middle brother.

The hearts that surround us – educating those that support the bereaved

Within the support groups I am a part of, whether in person or online, a common topic of discussion is insensitive  comments and actions made by loved ones.  It seems every bereaved parent has at least one story (most many, many, many more) about being deeply hurt by the words, actions or inactions of someone they hold dear.

But just as there is no definitive guide book on how to handle your own grief, there is no ‘Support 101’ for friends and family to rely on.  The unfortunate fact is that it often falls to the grieving to instruct those around them on what they need.  An almost impossible task, particularly in the earlier days when  you don’t know what you need, aside from the one thing no one can give – your baby back.

Whilst it seems momentously unfair,  it is often a choice between losing friendships or being open and honest about the support needed.  Personally, I could not fathom further losses.   But I know for others, certain friendships had to be let go.

So how do you educate those around you?

  1. As callous as it sounds, work out who is worth the effort.  For me, it was all of my friends but if you have one of those people in your life who only ever take, it might be time to let them go. You have nothing left to give.
  2. Consider telling people about the positive things that remind you of your child.  Through telling people about seeing Xavier in the sunshine, they often refer to “Xavier’s sunshine” and will send me pictures of beautiful sunsets and sunrises.  It’s a way to share him and have people remember him that feels joyous.   It makes people feel comfortable about sharing in his memory and helps them realise that as much as his death makes me sad, his life makes me happy.
  3. Have a forgiving heart. People are going to say hurtful things they don’t even realise are hurtful.  Try to see the intention rather than focussing on the content.  If the intention seems pure – explain to them why what they said or did caused you pain.  Do it sooner rather than later.  There is no point in holding onto hurt and leaving your friend completely unaware of the pain they unintentionally inflicted.  If you think the intention was hurtful, see point 1.
  4. Share articles and blogs that resonate with you with your support network.  Not only are you educating your friends and family, you often feel validated – a sense of – “see, other people who have lost a child feel exactly the same”.  It helps the non-bereaved to understand that what we imagine “healthy” grief to look like and what the reality is are often very different.
  5. Realise that the person who has stayed silent may have nearly rung a dozen times, had a half-written email filled with good intentions, verged on texting and then second-guessed themselves and thought their words would bring more pain than relief.  It’s not an excuse – if that person is dear to you they need to know that silence is often the most painful of reactions.   But don’t assume their silence immediately means they don’t care or aren’t thinking of you.  The opposite is the most likely scenario.
  6. If it’s your baby’s birthday or anniversary and you want people to remember with you, let them know that in advance. For Xavier’s anniversary, I had ribbons made with his name on them and asked people to wear them. Others have asked loved ones to reflect on how their child has touched them.    If you’d rather be left alone, let people  know that too.  But please don’t get to the end of the day and feel wretched that nobody remembered your baby. Some people may have forgotten, others may have remembered and been unsure what to do and so opted for silence as the safest bet, particularly if you haven’t mentioned the day in a public way.  With the exception of close family,  I don’t expect others to have Xavier’s dates engraved on their heart as I do.
  7. Lead by example.  People are so scared of doing the wrong thing – they will look to you as an example of how you want your baby remembered.  If you talk often about your child, they will hopefully also feel comfortable to do so.   Let them know you like talking about your baby (if you do).
  8. As a bereaved parent, you sometimes ended up supporting others through their grief over your child. This isn’t okay.   This is pretty much the best advice I have ever read relating to support –  Ring Theory.   Share it.
  9. If the thought of explaining how you want to be supported to all your friends and family seems overwhelmingly daunting, enlist the help of your dearest and closest friend or family member.  Get them to help you educate those around you. This also works well when returning to the workforce.  Having a trusted colleague talk to your team mates on your behalf can help avoid awkward conversations.   If you still feel quite lost and unsupported, you can ask friends and family to talk to SIDS and kids. Their counselling service extends to all of those touched by child loss. A dear friend often rang SIDS and kids in the early days as she wanted to learn ways to support me as best she could. I am so grateful for that.
  10. Unless a person has lost a child, they will never fully appreciate the depth and breadth of your grief. That’s okay – we want as few people as possible in this “club”.  However, it’s  important to connect with people who do know that pain and can offer a different kind of support.  Whether online or in person, child loss support groups are incredibly important and will relieve some of the pressure on you and your friends and family.

There is nothing fair about losing a child.  It’s not fair that this burden of education falls on the people who already have such a heavy load.  But the reality is, it does and the way we carry that load has a significant impact on how well supported we will be during this journey.  By assuming people know what to do, or seething without saying anything when they try and fail, we break our fractured selves just a little bit more.   The best advice I received when we said good-bye to Xavier was to “go gently”.  Go gently on our own hearts, and the hearts that surround us.  Go gently.