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To my ljubav and amore di papà

To the happiness of my life. To everything I hoped for so long. To all my small movements. I don’t know if we could have saved you somehow. I don’t know if I could have done something different that would allow me to have you right now in my arms. We dreamed about you long before we even knew you were there. And we will keep you in us as long as we are here.

My body is changing so fast. Two weeks ago I was with the belly and my love inside. Now I am only with the big scar, milk leftovers, big brown line across my belly and heavy silence inside home. I haven’t even heard you crying, you never opened your eyes. The only face you were making was mad like face when the doctors or stuff were changing you or touching you in some way. I was loving that face so much. To me it meant the whole life, it meant you were reacting in some way, it meant you were there. I know you were. I know because you were squeezing my finger every time. I know because every time I would put my hand through incubator and lay it on your small, fluffy body you would shake and move your small legs and hands. We had 8 full days of being together. Those 8 days outweighed all my life before. I never felt so mad to life, so in love, so lost and hurt. I felt no post operation pain. No exhaustion. No hunger. We were just in there trying to be sober, and wanting you to wake up so badly and asking sky and stars for miracle. But miracle didn’t come nor from the sky nor from the doctors. Nobody could do anything for you, ljubav. We just received the bad news (like it was not bad enough) that it is going to be worse. Our whole world collapsed, half of the time I spent crying and half holding your small hand hating everything around that was alive and had chance to live but you couldn’t. I hated every pregnant belly, every childrens laugh, every small bug and every homeless person wasting the precious life they have. Forgive us ljubav for not being able to save you. Forgive me for not noticing somehow that something was wrong. Forgive me for listening the doctors and not listening you. We hope you could hear all the songs that we sang to you. I sang you “How far I will go”, that was the movie we saw together while you were in the belly. Every time one of us would get upset I was playing you that song. I hoped you would recognise it. We hope you could feel all the touches and hear all the stories that we were telling you. All the time your daddy was talking in Italian and I was talking in Serbian, like you were not confused enough. We hope you didn’t feel any pain.

During pregnancy I was reading so much how tough and humiliating is it to express milk. Expressing the milk and hoping for your baby’s life is a new level of tough. I wish it to no one. Expressing the milk and dreaming about your baby laying on your breasts once…There were other moms in that parents room that smelled like pigeons, smiling. I felt like the whole world was pulling me down. And when I realised that it’s gonna be your last milk…I felt pain like no other, it was stabbing me through my chest, my arms were not mine anymore and my mind felt real physical pain, like my brain was burning. Every moment I was expressing milk I was trying not to cry and to imagine your small lips on my breasts and your hand playing around. I tried to put all the happiness inside that milk in hope you might decide to wake up. I tried to story-tell you about all the nice places in this world we need to discover together, from the rice terraces in Philippines, all the African safaris to the perfect waves for surfing on brazilian coast. There was so much in life to do. We are planning to have flying cars, rockets that will take us in 20 minutes from one side of the world to another, we want to live on Mars…yet…we were not able to save you.

I was storytelling you about your daddy hugs that are the most comfortable place in the world and that you need to try them out. I hoped and hope you were able to feel all this.

I hope that in those 8 days you felt that mommy and daddy loved you the most, beyond everything and that we forever will.

Nobody knew when her condition started. Nobody could explain the root cause or tell us why. Everyone was surprised how she was even alive to such fatal brain damage. But you decided to live a bit longer for us to meet you. We met you and dear God, you were the most perfect, nicest, loveliest creature we have ever seen or touched. Why it happened to us? Why it happened to you ? We heard so many things and none of those were something we wanted to hear. There is no explanation good enough. One explanation was explaining the physiology of her brain tissue and possible root cause that led to it. We couldn’t see our daughter solely as bundle of meat, tissue and neurones. The other explanation was saying that it happens 5 times in 5000 and that’s how it is. We couldn’t see you as bad luck.

I didn’t know what palliative care means. It took me some time to realise that it meant few more hours with you. It felt like volcanoes were exploding and burning down my chest and my brain. I was going away with you. I was looking your dad trying to contact all the hospitals and doctors he could reach. All the effort he had he spent into trying to find someone to save you. We waited until the last response. It was the same as every other – the damage is extreme. The only real answer we had at that time was that the medicine is not advanced enough. We aim for how deep is the universe, but we forget how fragile and unknown to ourselves we are. I hated all the life that was continuing while yours was at the edge.

Your last night you spent almost sleeping in my arms. I don’t know if I slept. Your smell got stuck into my nose and I’m looking for you every time something smells similarly. I changed your diapers three time. Your small smelly ass. How much we were wanting to hear you cry, to hear you scream. How much we were jealous to all the parents that could see their kids growing up. To see them move, to hear them cry. We were the only parents at the time in the world that wanted their kid to cry, to scream! All the dreams we had about you, all the stuff we wanted to teach you and show you, were screaming back at us – we will never do it. Every single change in those lines and numbers on the monitor was a hope for us. We hoped till the last moment.

The doctor asked us are we ready? Ready for what?

I asked to hold you a bit more. But I felt sick like never in my life, my whole stomach wanted to go out, my brain was exploding, my eyes didn’t see anymore. Your dad took you for the first time in his arms until I recovered. Then he didn’t want to let go, and I understand. Because none of us wanted to let you go ever! And it was time for letting you go. Are we ready? Ready for what doctor? Ready to put our child to palliative care? It meant to let you die. I took you back from your dads arms, because I wanted to hold you. I was holding you 35 weeks in my belly, and I wanted to hold you till the end. I wanted to be there for you. I was holding you and your dad was holding your hands. The doctor took out the ventilation tubes and disappeared. They told us it could take hours and it might seem like you’re trying to breathe but it was just some kind of automatic body reaction. I saw you struggling for breath no matter the morfium that you had. I saw something I wish to no person in this world. I saw my life going away in front of my eyes. I was holding you the whole time. We were holding you. You took everything with yourself ljubav. But we are not mad at you, nor at life. We love you the most even if you were only shortly there. You demonstrated a lot. You made us parents, you made us closer to each other, you made us hope like never before, you made us love like never before and we won’t talk about the pain. All the pain you took away with yourself, like many other things. I wish to no person in the world to go what we all went through. But we are not mad at you or at life. We hope you are at better place now. We hope you are not alone. We hope you will forgive us. I will forever dream about kissing you and touching you again. You are my reason to live again Aurora. Thank you for being the best gift ever.

We love you from the bottom of our hearts we have left,

Your mom and dad

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