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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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.