I wasn't sure what I was going to write about today. I thought perhaps I would talk about how I have survived the first year....but I don't feel like a survivor. Being a survivor suggests it is over. I don't believe I am going to wake up tomorrow and suddenly feel so much better because the first year is the worst and I've done it. Maybe I could tell you that I am trying to take the very good advice of a friend who tells me that after the first year, you've lived all the dates before, and it will never be that bad again....or maybe I could make some quip about deciding to embrace being 30 because it sure can't be any worse than being 29 was......I could say I am one year older, and 50 years wiser.
What I think I need to do is tell you about 20th September 2011.
I have never written this out before, but since I find writing so cathartic, perhaps I need to do this. Be warned, this is not an easy story to read, so please stop now if you think this will upset you too much.
My first memory of the day is watching the clock. We'd been told that the first 48 hours were critical, and I remember counting down the minutes to 48 hours....willing him to make it. I did a little internal cheer when he did, and I felt myself relax. He was going to be ok, it was looking good, he was doing so well, so strong. It was so cruel. I don't remember the exact time I got the call, but it wasn't long after the 48 hour point a midwife came in to me and said "they need you down in SCBU. NOW." I knew then, but I didn't want to believe it.
On shaky, not long off the operating table, terrified what I was going to find legs, I made my way down to the unit. I was by myself, having sent Mark home to get things organised for me to be discharged. I was allowed into the unit, but not his room, so I sat on a plastic chair outside and waited for news. One of his nurses, the pretty one, came out and told me he'd had a big bleed in his lungs and they were dong what they could, but he was poorly. Did I need anything? "no, leave me, go and help him" and she hurried back in. The other nurse ran out, and back in again with a little red box. I knew what that box was for. That little red box was bigger than my baby. I started shaking, I think. From somewhere the lady that gives out the bounty packs appeared and sat with me, I shouldn't be on my own, did I want a cup of tea? "No, no thanks" thinking please go away.
The sister came along and asked a lady in uniform, a cleaner I think, to take me somewhere. I am led to a little kitchen area, fabric seats, do I want a cup of tea? NO I feel sick. Mark arrives, with his dad "have they told you??" I cry, then mum arrives. Time passes, I don't know how long. One of the junior doctors keeps coming in to update us.....preparing us, I know, for what they know is coming. "we are doing all we can but your baby is very sick"
My father in law says "there is still hope" but I know there isn't. My prayer changes from "please save him" to. "If he can't be saved, please give me the strength to say yes when they come to ask me the question" we know which prayer was answered.
Sister appears again, if it is important to us to have Robert christened, we should do it now. Yes, please call the chaplain. Then the consultant, the question, the autopilot.....yes. My husband asks for more time, but I want his suffering to end. They go with my decision, I think they had decided anyway.
The chaplain is here, we file through into his room, my dad has arrived with my mother in law, I'm glad they made it in time. He looks so tiny, the incubator gone, he is so still laying there all alone, his tubes are removed and I hear him cry for the one and only time, a tiny squeak.....it breaks my heart as I fear it is a squeak of pain, but he looks so calm I don't think he is hurting. We gather round, he is baptised, a simple service, we don't promise to raise him in the church and renounce evil. We all know that isn't to be. Then I sit and he is brought to me, placed in my arms, I say "mummy's got you sweetheart" and he is so calm, he looks at me, he knows I've got him. I tell him to go to sleep, just go to sleep Bertie, his daddy holds his hand. I pass him to Mark for a cuddle, then back to me. Everyone fades away, gives us space, and I realise this is the first time we've been together as a family, just the three of us. I am so calm, so is Bertie, we are together at last, how we should be. It is so bittersweet.
I know the moment he leaves us, I say "I think he's gone". Mark disappears, he comes back with the consultant. Two fingers on his chest, a stethoscope, "yes, he is at peace". I stand and carry him back to the little table his incubator had been on, lay him down, he weighs nothing at all. Would we like to bathe him? Yes please. Cotton wool, a bowl of water. "I'd better wash behind your ears Bertie" It's the first time I've noticed them, they were under his hat before. They are so tiny and so perfect, like the rest of him. I wonder vaguely where his hat has gone. All done, they are not sure if they have an outfit small enough for him. I decide I want to go and buy him one. Shocked faces, are you sure?? Yes, please let me.
Outside, it is raining hard. Mark says "see, even the Heavens are crying" Mum drives us to town, she forgets to put her glasses on. In the car park, a lady asks us for change to park. I ignore her, Mark is polite, how can he manage this now? In the lift, two teenage boys. Don't look at me, yes I am crying, what about it?
We find Boots, baby clothes, I almost collapse. Mum one side of me, Mark the other. I find the tiny baby outfits. Two choices. We choose the white one with tiny blue stars and elephants. He'd like that one. They only have term sized hats, never mind, he must be warm, I pick up a blue one. Mum pays, asks the lady to remove the tags. I hadn't thought of that, and back to the hospital. In the car, we hold the outfit between us so it will smell like us.
Back at SCBU, Mark reminds me I still need to wash my hands, there are other babies here. He is so level headed. We go through to Bertie, he looks so tiny, we dress him, he is already cold. The pretty nurse gives me a yellow box, a white knitted blanket. Perhaps you would like him to have this? In the box are two tiny teddies, one for him and one for us. It's a memory box, for all his things, she's put in his name tags and cot card already, with some photos. We wrap him in the blanket and give him his teddy. It is about 2 inches tall, and fills his entire chest. His fingers are curled from holding daddy's hand, now he's cuddling his teddy. He looks so peaceful. His hat is too big, never mind, he must be warm. "They won't let it fall off him will they?" No, they will keep him exactly as he is now.
One final kiss on his forehead, and there's nothing more to do. We make to leave, leaflets now, call SANDS, they will help you. What? How can anybody help me with this?
Hearts shattered, we leave the unit. I'm in a daze, like a zombie, I don't know how I am moving forwards. Outside, another mum squeezes my arm. This happened to her first baby, she knows. How can anybody in the world know? I have never felt so alone.