We first took the test back in June, I was a few days late for my period but couldn’t quite believe we would be lucky enough to conceive already, we’d only been trying for a month or two.  And yet there it was, a great big YES smiling back at us. Awestruck we stared at the test, your daddy and I, taking in the immense feeling that we were going to be parents together, it was something we wanted so, so much.

Over the next few days my heart swelled, I felt happiness all around me, everywhere I looked I smiled, at the mummy walking with her baby, at the flowers growing in our garden, at the old lady walking down the street, so much beauty in life.

You made me tired, oh my goodness so very tired. Even the smallest of jobs, preparing dinner, running errands, writing blog posts seemed too much. I took it easy. I wanted to give you everything you needed, if you needed my energy you could take it, I would just relax, nothing was more important than you. Your daddy was amazing, he helped us out so much, cooking dinner for us all, cleaning the house, not a single thing was too much trouble for him.

We had the 12 week scan on a Monday, I remember being nervous, almost too nervous. I shrugged off these feelings, it was just because we wanted you so much wasn’t it? You would complete us, our family. We took your sister along to the scan to see you for the first time, she was unbelievably excited. We happily talked all the way through the procedure, Mummy, Daddy and your sister. Mummy pointed out your head, your belly, your little feet.

Only one person was silent, the lady doing the scan and then she quietly interrupted us…

Her words pierced through my heart, I felt all the blood rush to my face, I felt sick… She explained that the perfect baby we saw on the scan had an extremely large cystic hygroma and fetal hydrops. We didn’t know what these words meant but we knew by how serious she was that they weren’t good. The next hours past in a blur of blood tests, more words, tears and the most overwhelming sinking feeling in my heart. I felt like my perfect world, my dream was being slowly crushed, I was drowning in sadness.

Your dad and I arrived home that evening and hit the computer straight away, we needed to know everything there was to know about this condition. We read countless stories on the internet of families who were in the same situation as us and it comforted us a little, especially to know there were some cases where the hygroma and hydrops resolved and healthy babies were born. This gave us hope and we held onto that as tight as we could. Maybe, just maybe we would be one of the lucky ones.

More tests followed, blood tests, chromosome tests and more scans. It was lovely to see you again, looking so perfect. Cheekily you gave your daddy a little wave as if to say, hey I’m here, I’m fine, don’t worry so much. But the doctor thought your heart didn’t look right either, “echogenic” he said. I didn’t know what that meant so I looked it up, it meant it shone bright (in the ultrasound). How poetic… and yet it wasn’t supposed to, it was yet another indicator something wasn’t right. We sighed and buried it to the back of our minds. We wanted to concentrate on the positive, holding onto any positive idea we could… the next scan it will have cleared up, you’ll see…. she will be a fighter, you’ll see…

On the 6th September you were born sleeping, Lila Rose. You were 15 weeks old. The midwife carefully cleaned you, wrapped you in a tiny white knitted blanket and laid you in a miniature moses basket. Your daddy and I sat with you for a long while, admiring you. You were beautiful, utterly divine with your perfect fingers and tiny toes. We remarked how your smile looked like Daddy’s and your nose was just like Mummy’s. You had beautiful large wide set almond eyes like your sister. We studied every inch of your tinyness with loving care. Our baby girl, we named you Lila Rose. Lila means ‘night’ and you are our night Rose.

After a short blessing by the chaplain and time to write in the memory book the midwife explained we could go home. I have never in my life felt less like going home, because going home meant leaving you and the thought of that was heartbreaking. I sobbed, I wanted to take you with us, in all your perfect sleepiness, just so I could look at you some more, so you could be with us. You were part of our home, part of our family, part of our hearts, how could we hand you over?

That moment called for true strength and braveness. I took a deep breath and we left. I sobbed more in the car on the way home and in bed that night while your Daddy hugged me tight. I missed you, the distance between us was tangible and so very real. My heart was and will always be connected to yours. I feel that so strongly.

The past days haven’t been easy but you’d be proud of us. Daddy has returned to work and although he says it is hard to concentrate it is good that he has a focus. I’ve kept myself busy, I’ve baked apple and raspberry pie with your sister and read her stories. I’d liked for us to have been able to do that too. The sun has been shining, I’ve been out into town and bought myself a huge bunch of lilac roses and met people for coffee and chats.

I am devastated to the core and the tears flow easily when I think of you. Yet strangely once again, just like when we discovered you were in mummy’s tummy, I feel happiness and love all around. The smallest things make me smile, an old man who beams at me as I cross the road, the roses on my table, moments spent with your Dad and sister, beautiful, kind people who are all around me.

And I know it’s you, Lila, I feel you everywhere, in all the beautiful things of life. I love you. I’m sad you couldn’t be here with us as part of our family but I’m happy because I know that you are and always will be.

Love forever, your mummy xxx