I have sat down to write this post as we approach tomorrow, the second anniversary of our daughter’s death feeling that I must commemorate it, and her, in some way, but words are failing me this time.

Exactly two years ago today, I was in the middle of a living nightmare which has endured to this day. I was waiting in a children’s intensive care unit in London with my husband and my sister, watching our baby daughter on a life support machine. Like today, it was a hot, oppressive day. That night would see one of the worst electrical storms in recent memory, causing our phone lines at home in Sussex to go down and meaning that our contact back home to my parents (staying with and looking after our children) was minimal. Our poor neighbour had to keep running round with her phone at all hours so that they could be kept updated.

My sister kept a vigil with us at Romy’s bedside and constantly urged us to take breaks, to go out of the room to cry, breathe deeply, lie down, talk. I remember wondering why she was so insistent that we do this but in retrospect I understand that she was trying to alleviate the sheer torture of watching our child’s helpless little body breathing artificially, of trying to make any kind of sense of the bleeps and whirrs of the many machines in that room, of lamely telling each other that soon we would have this or that test result, speak to such and such a consultant, that there would be news, hope. It was dragging us under.

I remember laying my head down on the bed beside Romy, putting my finger inside hers, kissing her and begging her not to leave me. I remember trying to console my husband as he wept, feeling shocked as I realised that this was the first time in over a decade that I had seen him cry.

Most of all, I remember that I knew. I knew she had gone, that she was no longer with us somehow. I can’t describe how awful that feeling was; to look at our daughter but know that she was, in effect, already lost to me. I desperately wondered where she was, what I would tell our children, how I would possibly find the strength to go on living my life now that I had experienced such devastation. These thoughts were punctuated by deafening bangs and crashes of thunder and the sizzle of lightening bolts which somehow served to make the experience even more doom laden and dramatic.

Tonight, I have just fed my baby son to sleep and he lies here across from me on our sofa. Not the sofa that Romy was born on – that is long gone. Not in the house that she was born in and that we returned to on 18th July 2014. That is gone too, along with many other unbearable reminders. Still, though, as I feed him I can’t stop remembering how gut wrenchingly terrible it was to sit in that hospital knowing that I needed to feed my daughter but being unable to do so. For the first time in many years I had to pump breast milk. The first few times, I kept it, thinking that we could feed it to Romy somehow. After a while, I just tipped it down the sink because I knew. I still can’t hear the sound of a breast pump without being transported back to that room on that hot day.

Our new son sleeps peacefully on our new sofa in our new home; symbolic of how far we have come. He reminds me that I once thought I would never hold a baby again; that  I believed that my last memory of holding a baby would be that of holding my daughter, cold. Still, when I hold him I marvel at how wonderful it feels that he is warm, breathing, wriggling. Today, although I have felt as if I have a stone in my body, I have hugged and kissed my children many times.

Tomorrow is another day. Tomorrow my sister will come to be with us and look after our children while D and I visit Romy’s resting place together. I hope that this might help me to feel some peace. Tonight, I have a candle burning for my youngest daughter and I feel the shock that I lived with for over a year reverberate once again as I sit here and wonder, ‘How could this have happened to me, to us?’

Over the past year I have started to emerge from this state of shock and to think about how I can most usefully carry on with my life, how I can remember Romy and create for her a legacy, make her voice count in some way. I feel an intense need to thank people involved in supporting and caring for us over these two years, almost as if once those thank yous are complete, I can move forward in some way. As many of you know, I have started this process by approaching the two hospitals she was treated at and, with the help of a fundraising campaign, started to make plans to return to thank medical professionals in person. I have sent individual messages to certain friends who played pivotal roles in those early days, and I will write more. I have talked to close family and friends and reiterated how important their love and support has been to me.

I have so many ideas in my head but at the moment they are all subsumed by one thought: ‘I can’t believe that this happened. I still can’t believe that my child died.’ I know that once I move through tomorrow, like a painfully slow scene in a bad film, and emerge from it, something will thaw and I will be able to move forward with whatever it is that I am supposed to be doing. I hope that this will be to offer my support to others in some way.

I remember Romy every single day of my life. She is the first thing I think of when I wake in the morning and the last thing on my mind when I go to sleep at night. I see her in my three other children, I envision what she would look like were she here with me now. I try to absorb her life into mine and make it meaningful.

For the next 48 hours though, I will remember what I do not want to remember. And then everything will unfreeze and my life will continue again in some kind of mixed up way.