There are so many I could say but really, what’s the point? I’ve never felt so helpless in all my life. There doesn’t seem to be a single place in any aspect of anything where I can force or provoke a change that would make any of it better.
I can’t help my children to regain the confidence and joy they’ve lost this year.
I can’t force anyone to help them, in fact, I’m making it worse by trying. I’ve begged, literally begged, the people who could do that to help them, and they won’t. Or can’t. Or whatever.
I can’t force my body to get pregnant again.
I can’t force the businesses forward as fast as I’d like because there isn’t enough time.
I can’t cease grieving.
I can’t grieve enough.
I can’t give my children anything to look forward to.
I can’t enjoy the good bits of life because it hurts so much to do it without Freddie.
I can’t make time march forward to a place where none of these things matter quite so much.
This week I had a letter from the consultant who delivered Freddie. He blames his problems firmly on the 90 minutes I was in the pool. I think my heart will break. I don’t believe that, I don’t think any of the other people who have been involved with us really believe that either. Or maybe they are just being nice. But, my god, I never even wanted to go in the pool, I’d written it so firmly out of my plans that it never occurred to me to ask. I only used it because the opportunity presented itself, an opportunity that would never have happened if I hadn’t made two very specific decision about my care – the hospital I chose and to place a level of care between myself and them. Neither of which I regret. Neither of which I blame.
I still don’t understand. In all the times I’ve given birth, my babies or I always signalled if we needed help. How come the one time I was happy, felt safe, felt secure and felt comfortable, the baby did NOTHING to tell any of us he wasn’t safe? No dipping heartbeat, no meconium, no nothing. Just died.
I just want someone to help me understand.
I’m never going to know. I’m never going to know. After all this time, I’m forced into the position of having experienced the one thing I was so broken to have been deprived of and not knowing if that killed him.
I think, I THINK, that it is the misplaced guilt and grief of that consultant speaking. And he has nothing to feel guilty about. But it has utterly destroyed me.
I don’t know if I have blood on my hands. Again.
I don’t know. I can’t ever know, unless I somehow get pregnant again, go through everything again and evaluate the differences. And that would be a rocky, thorny path, even if it worked out. Killing another baby would be right up there on the list of alternative endings.
I’ve got to make a list, tonight, of the things that have to change. Top of the list has to be at least one of my girls who is now being made sadder by the one thing that used to make her happy than I can bear to see. I just can’t stand it. I don’t care how good she is at it, I just want her to be happy. I just want to see her smiling and energised again. That’s all I want. And if that means changing our life somehow, I’ll have to do that. I have no idea how yet.
Somehow I have to get to a place where there is some joy in this house again, where not everything is an uphill struggle against places where our face doesn’t fit, or we aren’t good enough, or we’ve failed. There has to be some place in the world where things would just work out for us. Some place where people will just mind how well we cope. Some place where we aren’t the annoying, needy family who ask too much but don’t really matter that much.
I just want some joy. I just want to see my children smiling. I just want something for us all to look forward to that doesn’t come with strings and anxiety attached.
I just want someone, someone who can actually make a small change that would make a big difference, to see that we are collectively drowning here and help us.
I’m so exhausted. It is just beginning to be nearly impossible to put one foot in front of another. One of my children is so sad that the thing she loves is sapping her of all her happiness, one is reverting to some of the worst Aspie behaviour I’ve seen, one is developing more routines and coping mechanisms than I’m comfortable with, one has lost her dream chance and is still bereft about her brother in a way that I can’t even begin to solve. And one is dead.
Edited to add something I wrote in reply to an email, just to clarify: I was upset when I read the above and didn’t make the source of my distress clear enough. Whatever else I might feel, I hold the consultant in question in the highest regard and if I have appeared to feel blamed by him, I think I need to clarify I think the opposite is true. So…
He hasn’t tried to blame me; I think he feels that he said yes to something that on reflection he could have said no to and maybe saved Freddie. He blames himself, not me. He was the loveliest, kindest, most supportive man ever. I made him write the letter and he could hardly lie. He visited us every day, cried when he did came to Freddie’s funeral. I could hardly have asked more of him. I think he feels terribly, unnecessarily guilty and the letter was him trying to take responsibility for it where that was not necessary. I think he would like to take the blame off me and any decisions I made. I think he fears that had he been less thoughtful, less supportive, less kind, I would have my son here now. And I might. And I’d probably hate a man who wouldn’t deserve it.