Wishes for LillyAnn
"I was told that she wouldn’t live after birth, she did for 6 days. But they really drum into you that she will not live after birth. I even went to a doctor that told me that she would be stillborn probably. When you’re told you’re going to get nothing, to get 6 days is just a miracle. She kicked a lot more than Kate, every night I would lie in the bed and say ‘Goodnight Kate, Goodnight Lillyann’ because I knew which side they were on, but she would kick an awful lot more than Kate.
We're coming to see an angel
When I had Fintan, Kate and Glen I would always think everything they do I would be so proud of. I was so proud that she lived 6 days. There were 2 wishes I had for her, one that she would feel the air in her face and one that she would be held and loved by everyone. That everyone she’d know that she was so wanted in my family, that she was so loved and any length of time was enough with her. So, when she was born she cried like Kate, I couldn’t wait to meet her, I had my whole family there, and she was brilliant. I couldn’t believe it she lived and she, we held her, she was passed around and it was lovely to be with her. It was lovely, to hold her and, I’d give anything to go back to just then and she was so healthy. The day that she was born, the hospital they had said that there couldn’t be anymore people in there to see her and that’s what I wanted, I wanted her to know that this was the family, this was the community you were going to be born into, this was who was going to love you, and she got held by everyone. You know, people even Mammy’s friends were coming in, and that they kept saying ‘We’re coming to hold an angel’ that’s what I wanted. I wanted her to feel so much love.
My best memories
I didn't want to come home, I felt if I stayed in the hospital that would be my safety net. Declan wanted to bring his daughter home and she came home the Monday morning and she lived until the Wednesday afternoon. And I always remember the Tuesday morning. We got up and there was nobody in the house, there was only me, Declan and our four children and we had to wash and clean them like we would have done if she was going to be saved and it was lovely and we sat down for breakfast and we had each one in our arms, and that was lovely. I think that's probably my best memory, that it was my whole family together.
On the Tuesday night she took a terrible seizure, and I didn't want her to, I was being terrible selfish, I didn't want her to go at that time, I wasn't ready but on the Wednesday morning she passed away in Declan's arms. Which was probably fair, as I do say, I carried her for 9 months, I knew all her little moves, all everything, he got to hold her at the end. There's not a day that goes by that we don't think about her. There's not a time that we don't remember being together. I do certainly think that I brought my family closer together. Even Declan's family, brought everyone closer, she made me more relaxed in myself. I'd have never have worn hoodies or things like that, my job was a beauty therapist, I would have went into to work, immaculate hair, make-up everything; don't care anymore I'm more relaxed, I'm a lot happier and that's a funny way to look at it, you know people think you should be grieving in yourself.
She made me realise what is important. I I would have never spent as much time with my kids or played with them, she made me see how absolutely wonderful they are. I have the three of them and they are really good kids, I love to be with them and I think she brought that to me.
Always in our hearts
I now separate Kate’s birthday the 20th August, so we celebrate the 20th August every year and we’ve a separate day for Lillyann. The 26th of August every year my family come and we let off pink balloons and we have a party for the kids. Everyone has their own day. Glen has his, Fintan has his, Kate has hers; so she has her own day it’s the 26th August, the day she passed away. We’ll remember that and for my children to always stop and think on the 26th of August that it’s very important to me that they remember they had a sibling who passed away that day. That’s very important for me, you know that they go on and remember that, you know on, on someday that they are busy, they look at the phone and it’s the 26th August and they go ‘Oh! Yeah! I must ring Mam’, Simple things, she will always be remembered by us.
For a little person to bring so much into my life, was great. You think you’re untouchable but you’re not, and you think you won’t cope with things but you do, if it doesn’t kill you it will make you stronger, do you know and it’s very true. I don’t think we should pick and choose our children, I’d never pick and choose between any of my four, I’d never say well, you’re not worthy of being born because you didn’t have your cranium, you’re not worthy, no I could never pick and choose that way, never.
She has changed our lives dramatically, for me it brought so much to my life. Being a single pregnancy, if it happened to me again I would bring the baby without a doubt full term. All children are important being born, you can’t pick and choose, it’s pot luck and I got lucky."
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Anencephaly is a congenital birth defect that occurs in approximately one in one thousand pregnancies. It is a neural tube defect, just as is spina bifida.