Fliss and her husband found out following the 20 week scan that their daughter had Edwards syndrome and was destined not to stay with us. "It felt like it was presumed we would go down the alternative route, which for some is the right option, but my husband and I could not be the ones to stop her heart and we both felt we had to give her a chance. The rest of the pregnancy was hard to say the least but I don't regret it," shares Fliss. Ayla Hope was born 40+6 on 1st February 2012. As she goes on to say, "We were able to spend time with her and bring her home, she took her last breath in my arms on 4th February at 9:10pm. My heart broke never to be mended. We have a son who is 2 1/2 and he is the only reason I have managed to get up every morning, him and my husband, my rock. "
Where am I now? I don’t know, to be honest. A state of confusion, loneliness and fear, occasionally hope and positivism. Desperately trying to maintain the positive persona that I often feel I am. The person who has energy, wants to make a difference in the world because of our beautiful daughter, who can play with my son without a wedge of unhappiness stopping me from connecting with him completely. Does he know I’m not completely there when we play? Can he sense that Mummy’s heart is not completely in it? I don’t know, I hope not. I feel like I’m a worse mother because of my loss, not a better one. A more grateful, less naïve mother but my patience isn’t what it was, my energy levels shocking and my ability to cry at the drop of a hat quite immense. My boy wipes my tears away for me now and fetches a tissue, he’s so used to Mummy crying he knows what to do, normally a little dance or something that will make me smile or laugh again. My heart bursts with love when I think of him and screams in agony when I think of my girl. She should be here with us.
People have told me how ‘brave’ I am, what an ‘inspiration’, so ‘strong’. Like I’ve chosen to walk this path, suffer this pain and forever have a hole in our family where Ayla should be. I’m not any of these things, I have no intention of inspiring others, I often hide from the world; that’s not brave or strong. I am simply a Mummy. A Mummy who loves her children more than words can ever describe. I remember when I was pregnant and we knew our daughter was destined to leave us I had to go into hospital with a suspected blood clot (I knew it wasn’t, funny how carrying a baby destined to die but not knowing when can leave you a little breathless at times) a paediatrician saying to me what a brave thing I was doing, I simply looked at her and said ‘I don’t really have a choice do I?’ and she replied ‘There’s always a choice’. How was there? A choice on how soon she leaves us or how she leaves us, maybe, but the outcome would be the same. For me, giving her a chance was all I could do; we have memories, photographs and videos of her, mementoes that have to last us forever now, they are all we have.
I feel like a kite, attached to the world by a string. I float above everyone, watching them carrying on with their lives, moving forward and I’m there, watching, I’ll sometimes swoop forward, looking like I’m going somewhere and then a gust of wind grabs me and pushes me back, sometimes I let it, sometimes I try and fight it and I can push against it for so long and it may ease or it can slam me down so hard, so fast I can barely catch my breath. Then I have to get back up again but I’m not allowed to find my feet, I’m back up into the air to watch and continue my slow, painful, spiralling journey. What of the people on the ground? Some are desperately clinging to my string so I don’t go too far, keeping me as lifted as they can, calling messages of love and support, but not truly understanding. Others scuttle by, their heads bowed low so they can’t see me, they don’t want to look up, face the pain, it’s too much for them. There are other kites too. Some just bob past, on their own journeys, others become entangled with me and we are bonded through our tragedy, our heartache, our children. All of them bring comfort for just being there, as much as I hate that any of us are here it is always a comfort knowing we are not alone. The strength, understanding and support gained from baby loss Mummies is a force so truly immense I often find myself in awe of it all. How can so much love, friendship, understanding and support come from such pain? How? Our children, that’s how. Their love for us is all consuming, just as much as if they were in our arms like they should be. As is our love for them. That love has to continue somehow and we humans have to do something practical, so we extend our love for our babies, our children into other baby loss parents, to reassure they are not alone, what they are feeling is ok and that we are there to support each other whenever that wind of grief slams us so hard we struggle to get back up. My daughter has taught me so much and brought so many wonderful people into my life, it is an honour to be her Mummy, I just wish she were here with me.