Holly

So I think I've been kind of putting off actually writing this bit down.
Holly is going to die.
Its something that I'm just numb about at the moment. I have cried. I have cried a lot. But I don't think that it has sunk in. We don't know when, we don't know how long we are going to have with her, but she will die before me. I hope for L's sake she does. Not being nasty at all to L, I just would hate for him to have to look after her by himself just as I wouldn't want to do it without him. I think I made mention the other night about it. The information that we have says that a lot of babies die in the first year, the average age of a baby with hydran is 4.7, and the oldest known is 20 something. So even if we get 20 years out, she will die before me. How do you comprehend that? Its funny its this thing that is constantly in the back of your head. I was working around the house today and the thought of a funeral popped into my head. I don't know if that is morbid or weird or realistic or normal. I've got no idea if I'm over dramatising or trying to prepare myself. I think of myself sitting in the front row of the church where we got married - such a beautiful place, a place that holds such amazing memories for me. I think about sitting there, on the left hand side of the isle, Luke is next to me, I'm closest to the isle, closest to the coffin. Its white with red roses on it. I can picture myself being there, but I've got no idea about the emotions that go along with it. I'm trying to imagine what it will feel like, how would I face people? Do I want people there? Would I prefer to have a completely private ceremony? No one else knows her like L and I do so why do other people need to be there? I know that they might think they are there to support us, but it will be too much? How do you go walking out of the church behind the coffin? Its hard enough with a grandparent, how do you say good bye to a child?
I thought about it the other day too cause I'm a big believer in spirits. I very much believe that my ancestors are around me in spirit form looking after me and the other people they loved. I know my grandparents are with me a lot. We have a picture of L's grandmother on our fridge. I often think of her and how excited she was to learn she was going to be a great grandmother. I thought to myself that at least our grandparents will be able to look after Holly until I get there to join her. But will they look after her? They haven't met her? How do they know her? Who will be there to look after her? I don't want her to be alone.
One of my besties, T, lost her cousin last year to suicide. The cousin was only young and I remember T saying at the time. With old people you can say 'oh, they had a great life' and if a spouse dies you can say 'they missed their spouse and at least they are together now'. What do you say in a situation like this? She isn't old, she hasn't lived a great life and she isn't joining anyone in the spirit world.
I feel just so lucky to have been chosen to look after her sometimes. I honestly feel sometimes that I've been picked not cause I'm strong enough cause I'm not, but more cause if she had have been given to someone else, she wouldn't have gotten the best care. I don't know if that sounds arrogant or not. I feel that if she had have gone to someone else they wouldn't have looked after her like I do. She isn't the easiest to care for, she has to be held right when you feed her and she gets fussy if you hold her wrong. I know her, I know which cry means what. I can tell before she is about to cry that she is going to. I feel it, I feel like I'm pretty switched on to her. Maybe if she had have been given to someone else they might not have been as switched on. I don't know.
I have had soooo many life lessons out of Holly. I have learnt just sooooo much. I've learnt and am still learning about judgements. I have learnt and am still learning about not caring about other peoples opinions. I have learnt and am still learning about disabilities. I think I'll go down each of these paths separately over the next few days. If I start now I'll be here till all hours of the morning. It my birthday and mothers day tomorrow. I'm looking forward to my first mothers day! I'm not really looking forward to having to be sociable. Sometimes I just want to curl up on the couch, just me, L and Holly. Let no one in and stay with just us for the day. My family!