May 1, 2019


Will Grief Last Forever?

A little while back, I made an offhanded comment to my therapist about how my grief would last forever. Therapists have a way of taking one of those little remarks you make – in my head, just a small thread in a bigger conversation – and honing in on it.

“Do you really think you will grieve forever?” she asked, curiously.

She asked in such a way that I felt perhaps that yes was the wrong answer, but I proceeded nonetheless.

“Yes, I do,” I responded, matter-of-factly. But, as a caveat, my vision of grief is synonymous with love. In my head, it was as if she had asked me ‘Do you think you will love Nicholas forever?

Well, of course I will.

I don’t see the grief as a noose around my neck, but rather like a Nicholas-sized space we live around. We won’t ever ‘get over’ losing our son but we learn to live around the space and, with time, the grief becomes a little lighter and the space a little easier to live around.

Tomorrow marks three years since Nicholas died. 1095 days of living around the space that Nicholas left in our lives.

I have been reflecting on grief a lot lately – my grief, specifically. Because it is such a personal thing and it can look so different for each individual. I have been thinking a lot about how grief morphs and changes over time, and what my grief looks like today, at the three year anniversary of my son’s death.

Here is what I have learned about my grief over the past three years.

Grief has no concept of time.

There is some kind of time manipulation that goes on in grief. To know it has been three whole years since our son died in our arms seems quite unbelievable. The events around his hospital stay and death are so crystal clear to me, they could have happened yesterday. And yet sometimes it feels like an eternity since Nicholas was here in our home, making us all giggle with his antics. It feels so surreal that he was here one moment, filled with spirit and larger than life, and then gone the next, that I sometimes wonder if perhaps he was simply a mirage in the first place.

There is a fuzziness around the edges of my grief now – it’s not quite so sharp and raw. I can talk about Nicholas and his death without dissolving into tears, which was nigh on impossible in the early days. And yet, my grief is never far from the surface. It doesn’t take much to tap into the emotion, especially around those milestone days, like birthdays and anniversaries, when the grief feels heavier and takes me under like a tidal wave. But, although it happens less often these days, grief can also approach on random days, without warning and with no particular cause or trigger. I have learned to read the signs and try to honour what I need in those moments. Sometimes I even welcome it – in the routine and busy-ness of everyday life with two living children, it reconnects me to my beloved son who has died and reminds me to take the time to sit in my grief and be with him, even if those feelings are uncomfortable.

Living with grief is not easy, but for me it has become easier to live with over time.

There is no part of my life that the loss of our son does not impact.

Nicholas’ loss has permeated every part of our life – from meeting new people to choosing a holiday destination, hearing a song on the radio to decluttering a cupboard – there is nothing it doesn’t touch in some way. Making smalltalk with strangers over previously simple questions such as “how many children do you have?” become so loaded after losing a child. While I will always be his mother and he will always be my son, sometimes I choose not to share that I have three children. Returning to a holiday destination that we loved sharing with Nicholas can be hard, but even going somewhere he’d never been makes us ponder what he would have thought of it and how the experience would be different with him there. I think of most historical events in relation to how they fit into Nicholas’ timeline – did they fall before Nicholas or after his death? Every place, every moment, every day has a part of Nicholas in it and he is never far from my thoughts – whether consciously or not.

I know that it’s possible for joy and sadness to coexist.

I can feel sadness that Nicholas is no longer with us and still experience joy. I can wish he was here without feeling miserable that he is not. I can watch a video of him and laugh out loud at his antics and yet also feel heartache that we don’t get to make new memories together. My experience of grief is that it comes with a multitude of emotions that shift and move over time. But one thing I am certain of is that Nicholas would want us to continue having adventures and making joyful memories together and to live as wholeheartedly as he did.

I have to forge a new identity one day at a time.

Carrying on living after you lose a child takes a whole new level of courage. I actually think it’s impossible to be the same person I was before Nicholas died. As much as I miss that lady and her past life at times, I cannot be her anymore. I have seen too much, felt too much, lost too much.

When Nicholas died, I wanted nothing more than to go back to that life with him in it. I wanted to have chaotic mornings getting three boys out of the house and sing to the Wiggles as we drove the familiar route to school and kindy. I wanted to see Nicholas with his new friends at kindy and be the Mum on roster day. I wanted to see Nicholas playing with his big brothers. This new life was so calm and quiet, so heartbreaking. There was so much space in it, so much silence.

But, day by day, I have edged towards working out who I am without Nicholas physically present in our lives and I am stepping more into this new version of me. I work around the space, trying to keep our connection to Nicholas while having new adventures and experiences without him. Finding the grace to accept Nicholas’ death is a work in progress, but I feel like it honours his life if I choose to live my best life.

I am on a journey towards acceptance.

The outstretched arm of love

I know there’s nothing I can do to change this path I’m on. I can’t bring Nicholas back, as much as I would in a heartbeat if I could. I have come to accept that there’s little I, or anyone else involved in his care, could have done to have changed the outcome. As much as it was easy to dwell in the place of guilt and ‘what-ifs’ after Nicholas died, I choose not to live there.

I choose to focus on what I am grateful for – that we took a chance on loving this baby that arrived pre-labelled with Down syndrome and, oh boy, were we the lucky ones to receive his love and for all the lessons he shared with us; that we had four and a bit amazing years getting to know our child, who was pure delight to be around (98% of the time 😉); that the world has been made richer through the lives Nicholas touched in his time on this earth, and continues to impact even after death; and that he continues to teach me to look for the love, the gifts and the joy in every situation, no matter how challenging.

I am grateful for the tribe who loves our gorgeous boy and remembers him with us.

A photo of coloured wind spinners in a glass jar

I know that no one else could feel the depth of Nicholas’ loss like we do, and it’s no one else’s responsibility to remember milestone dates and stories. But I am often humbled and always grateful for those who send a little message to let us know they are thinking of Nicholas and of us. Last week I was stopped on the side of the ride by a friend who’d bought a rainbow coloured wind spinner and was carrying it around in her car until she saw me.

Whether it be a photo of a magnificent rainbow they’d spotted or a comment on a social media post, I am grateful for each and every little bit of contact because it reminds us that Nicholas won’t be forgotten and that his life was important – not just to us, but to you as well. And that is the most wonderful balm to a grieving heart.

I am so grateful for those who embrace us on our messier days and who show up for us in a multitude of ways, even if they don’t feel like they know what to do or have the right words to say.

So, do I think I will grieve Nicholas forever? Yes, I do. I will grieve Nicholas forever, just as I will love him forever, as the two are so intricately intertwined. And I’m okay with that.

*This video explaining one theory of grief really resonated with me, so I’m sharing here in case you might find it helpful too.

I am so grateful for your thoughts and comments, so please reply below.

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