Last week, back in the town where Norah died and held amongst the consultants, pathologists and other professionals involved in Norah’s care, Norah’s inquest was finally concluded. We have suspected all along that we wouldn’t find a cause for Norah’s death, so to an extent we were prepared for the outcome. In anticipation of the inquest we had played out a multitude of scenarios, and ultimately nothing in the hearing came as a shock. The coroner concluded Norah’s case under the umbrella of Sudden Unexplained Early Neonatal Death (SUEND), which is a diagnosis of exclusion similar to Sudden Infant Death Syndrome (SIDS).
Throughout the last ten months without Norah, I have striven to face my grief head on, with an honest and ultimately hopeful force behind everything I have done. In reflecting on Norah’s inquest, from the way her case was handled, to how it concluded, there is an absence of that driving, hopeful force that I have embodied so far. The label that Norah’s death falls under is a stark reflection of how I feel in the aftermath of the hearing. Within the confines of the open ended investigation, as desperate as I felt reach to end of the inquest, I became accustomed to the security of the unknown, but familial and ultimately ongoing process. I thought I would feel a sense of relief once that process ended, I looked forward to removing the coroner’s phone number from speed dial and collecting post without fear of what reports were awaiting us. The finality of the conclusion absent of a diagnostic outcome feels almost callous though, and the weight of the senseless nature of Norah’s death has felt almost too much to bear.
Whilst our strength in enduring grief and moving forward has never felt easy, at every stage up until now persistence didn’t feel optional. Whilst I recognise our abiding love and perseverance throughout every decision so far, every stage we have met up until now has had an external drive. We had a funeral to plan, a meeting to attend, a report to chase, a phone call to make; there have been tasks, expectations and official regulations guiding us along. Perhaps then, that is why I feel so lost right now. Without ongoing external forces, it feels like it is time to make an active decision to pause in our grief, and to continue to encourage growth. It may be that this is the courage we are always hearing so much about, although it’s rare for us to feel like anything other than ordinary people responding to incredibly difficult circumstances. As tempting as it feels to succumb to overwhelming devastation, our lives are still waiting to be lived with and alongside Norah. So in an attempt to break out of the waiting place, we are making a mindful decision to sit with, and accept, the absence of an explanation, before we take steps to continue constructing and personifying the hopeful drive that has carried us this far.
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Your courage encourages me to not lick ancient wounds raw as usual as I approach 28 years since our family lost Sam. Thank you. Although we had a firm explanation as to how he died, the real answer of “why” can only forever left unexplained. I hope your not too disappointed at the outcome of the inquest. I’m sure no result could even come close to explaining your why.
Every day I gaze for hours in wonder and gratitude at Phoebe. But in her I’ll always see her first friend Norah and feel an echo of the pain and love burning inside you both. Take that pain and love with you and let it fuel the rest of your journey that I’m sure will be filled with joys you only just beginning to be able to imagine. I feel so lucky to have shared the warmth from Norah’s light and I’ll feel that with me for the rest of my journey xxx