It shouldn’t have been you. It shouldn’t have been us! But should it have been anyone else? Should friends we know lose their child? Should this happen every day to families all over the world? The answer is no! No baby or child should die. My husband, my parents, my friends, they can’t fix this for me. The closest I have to an element of being ok is having Max and Lewis. But imagine a triangle, remove a side and it isn’t complete, it may hold up and manage for moments, minutes, hours, days, but it’s going to fall, it’s going to collapse and it’s going break. That’s me, I can manage elements of time, but inevitably the crash will come at some point, it can be an unexpected trigger, a milestone, a memory, but it will come. Should I have, had you? Was 21 months with you worth the 30 plus years I will now live without you. I won’t lie, after you died, I wondered if it was worth it. My mind tried to tell me I didn’t connect or love William in the same way or as much as I love Max and Lewis, it was trying to protect me from this hell I was thrown into. My body was desperately trying to help me to survive. But 19 months on and thinking more clearly I would do it all again to experience 21 months of him. When you died and to this day I want one more day, hour, minute with you, and that is how I know it was and is worth all this pain, because I would take you walking through our front door and into my arms for one cuddle, I’d take the additional hurt, and distress it would cause because there was no greater feeling than loving William. The kisses, the cuddles, the photos and the memories, you were real and I continue to say your name and share you with the world. We were that picture perfect family, I was a mother with her hands full, needing eyes in the back of my head because of your climbing antics and desire to pulls children’s hair. We were picture perfect because from the second you were born, we were complete. A third baby was brought into our world and that was it, complete. So of course, the moment this nightmare started I knew I could never be the same woman, the same mother, the same friend or daughter, or sister. I hold myself back with love, worried to get too close, because what if? The what if happened to me, that scary thought which a parent imagines for a split second, what if my child was to die, and then your brain cleverly shuts it down, because it won’t ever happen to me. I remember thinking my family won’t ever get covid, it won’t be us. It will happen to other people, but guess what ,2 what ifs happened to me in 2021.
My baby died and a month to the date, on 17th December 2021, I tested positive for covid. I hoped I would die. Isn’t that the worse thing to think, but it’s honest. I quarantined in my bedroom as Keith, Max and Lewis were negative and I was alone. I lost my voice and I was really poorly, but was I poorly from the virus or from my broken heart? Both I’d say. I won’t ever have everything again, because there was only one William Johnston, and I am so proud to say I created you my special boy. I won’t ever feel the purest joy again, or not find it bitterly sour to take a photo with Max and Lewis, but I do because it’s a privilege to be alive and live. I am still a traumatised woman. I hide it from the world better than I used to, but I see the world differently now. I know more about survival than most people will in their lifetime. I used to think that with 3 children I survived the day, as I’d crash on the couch after bedtime, I used to think survival was managing on no sleep because my newborn baby hadn’t slept that night. But what I’ve learnt is all of those ‘survivals’ are not a surviving. I was lucky to feel exhausted after a long day with the children, juggling everything with a baby on my hip. It was a privilege to be up in the night trying to calm my baby because all they wanted and all they knew was me.
Now when I sit down in the evening it’s usually following a comforting conversation with Max or Lewis, supporting them and helping them figure out this world where their baby doesn’t live anymore. I sit down and don’t have toys to tidy away because all my children play with now is a football or the Nintendo switch. I lay awake in the night, not because my children keep me awake, but because I am reprocessing and reliving that my son died, that the woman I was isn’t the woman I am today. I lie there imagining where I’ll find the energy to be upbeat for the boys in the morning. If I have the strength to answer their questions about William. And when I’m tired, actually, exhausted in the morning, I desperately wish it was for the reason that my little boy needed me in the night, not because I needed him! I lay on my side in bed and remember the image of him in the bed next to me a month before he died. He had woken at 5am and I desperately urged him to go back to sleep in bed with me, with my eyes closed, I stroked him hair and his skin and he did. He fell asleep and I could hear him softly breathing. How lucky was I to feel tired because William wanted to be with me the very second, he woke up in the morning. The luckiest woman, and mother in the world. My HOPE in life was to be a mother, and if that was meant for me, my GOAL in life was to be the best mother I could be to them, and my REWARD was to see them grown up! This was scrambled and I hit a bump in the road, I don’t get the full reward. I get 2/3 (I say it nervously as I know what can happen) but I will only see 2/3 of my boy gang grow up. The grief is sandwiched between the PTSD. I grieve the 21 months we had. I am traumatised from the seizure, the cardiac arrests, the PICU, William dying in my arms, a funeral, post mortem (to name a few) And then there’s the biggest chunk of grieve, the one where life goes on. A mother torn down the middle, smiling and celebrating Max and Lewis’ life and dreams, happy and positive for all that they are and all that they achieve, versus the brutal reality which brings me back down to mine and Keith’s reality, we’re not like the families who surround us, our little boy William doesn’t get to grow and achieve his dreams.