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.

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A crisis of confidence

I remember it quite clearly. Driving with my sister, Xavier in the back-set only precious days old. I remember telling her how blessed I felt. How everything in my life felt pretty perfect. That there were a few little things I would change but in the grand scheme of things they seemed so minor that complaint seemed ungrateful. Did I throw down a challenge to the universe when I uttered those words? Did life suddenly notice that heartbreak had been conspicuously absent for too long? I have given up searching for reasons as to why Xavier died, but in the early days that was a big one. Life had been too good for too long and the balance needed to swing wildly in the other direction. When my son died, the world beneath my feet crumbled. And I had been so sure of that solid earth. And even now, more than two and a half years later, the ground still shifts.

I might have imagined grief as an ocean of tears to swim through. Or a staged process with an outcome. I might have thought sadness to be the primary emotion. But it turns out, that’s not how grief works. Grief is, above all other things, unpredictable. It changes your footing. Even when you think you have slain a particular dragon, it rears up and strikes again. At the moment, my self-confidence is taking a beating. There are a variety of reasons for this – I am challenging myself and pushing myself into uncomfortable and unfamiliar territory. That’s never easy, but I can’t help but think the girl who I was before Xavier died would be tackling it with more confidence. That she wouldn’t second-guess herself so much.

When I headed back to work, months after we buried Xavier, I was frustrated with myself. Tasks I once found easy took three times as long. Words that once flowed were stilted. The escape that I sought in work didn’t prove the distraction I’d hoped for. Before Xavier died, I swam easily through clear waters. After he died, that water turned viscous. Everything was a struggle. And that, in and of itself, was so frustrating. I was continually exhausted from the effort of merely appearing normal.

Eventually, I found my way. The viscous thinned, but never returned to the consistency of water. And now, as I embark on a new adventure, I find myself thrashing again. I know I am not the only one to do this – to turn on myself and become my worst enemy. I throw unhelpful thoughts and walls up. And when you are busy beating yourself with a stick, telling yourself that you failed to protect one of your precious children delivers a crippling blow.

There are so many things that change with grief. Self-perspective is a large one. Where once I believe the earth beneath my feet rock solid and incapable of movement, I now know it’s quick-sand. When life travels along beautifully, I watch over my shoulder, breath held, for the pendulum to swing the other way. And I find it hard to believe the universe will deliver simply because I wish it to be so. I know that the only way for me to succeed is to believe in myself. To realise that the self-doubt may never leave, but to walk on fearlessly anyway.