Mary's Story: My child's life in my hands

Mary (0:00): I sometimes wonder whether, if I, if I cling on to her tight enough, it'll make some difference. I pull her close, close, close to me so I can hear her heart beating, that little heart nearly four, and they say her heart's still not much bigger than a walnut.

James (0:28): Have you ever felt torn, experienced that inner struggle of clashing needs, yearnings and beliefs, not a fight with others, a fight within yourself? It's confusing, it's painful, it's in a conflict. I'm James. Welcome to our podcast, where we share stories, resources and hope around all things in a conflict. This is a first person monologue, written out of personal experience and presented without comment by the Torn team. The author, a woman in her late 30s, has chosen to remain anonymous, so her words are voiced by an actor. This is a heart rending story, mentioning serious child illness and bereavement. So you might consider where and when you listen to it.

Mary (1:27): I don't know. I don't know. I don't know what to decide.

Everyone's kind. Everyone's really kind. They ask how we're doing. They tell me how she's doing. They explain it to me. I want to be sure I've really understood it. Really got it.

I haven't got it at all. Her heart is compromised. They say, what's that mean?

Think, think, think, think.

But I still don't know.

Except in some ways, I've always known I've always known something was wrong. I've known it since before she was born. I've known it for nearly four years.

I told myself, and David told me that I was just worried because of what happened before. But it wasn't that I wasn't just looking back. I knew something was wrong with her now.

Of course, there's nothing wrong with her. She was, she is perfect, just like a little doll, bone china and tiny, tiny. I've ended up making most of her clothes myself, even her vest and knickers, and we can't even find shoes small enough for her.

I guess that should have told us. That should have told them. Well, I did tell them. I told them, when she was born, that she wasn't feeding, right, she wasn't growing but they never believed me. They sent me away till last winter, when she got so ill, they believed me then.

The doctors are good men. They're doing their best. They're trying to be clear and honest, they tell us, these are the possibilities. These are the options. These are your choices. Good men.

And then quite suddenly, last month, we need a decision, not right now, but soon, and their eyes are sliding away. There are too many silences.

There are things they're not telling us.

So as we were leaving last time, I pushed that nurse to the wall and made her tell. I wasn't rough. I didn't really push her. I just said very calmly that in my place, she'd want to know. So She twisted her mouth and looked down and wouldn't meet my eyes. And then so quietly, had to lean forward to hear her. The operation is your only chance.

And then even quieter, but no child has ever survived.

Mary (5:03): Okay, I thanked her. I can work with that. I'd rather base my decision on reality. Yes, it is my decision. Operate. Not operate? Yes, no.

Mary (5:33): I'm glad it's mine to decide. David hasn't tried to influence me. He's never said a thing.

Mary (5:43): He's been clear that he'll go with what I want. It's a gift like, like those tokens he gives me every Christmas and every birthday so I can buy exactly the right present for myself. And I'm grateful. I really am. He always leaves me free, lets me go my own way. I've always liked that in him. It's why I married him. So now it's down to me to think it through. I'm good at thinking crosswords books, having the radio on, having something to think about. David, bless him. He doesn't understand. He doesn't get it that I need to keep thinking. He keeps me balanced. I do a lot of thinking now, operate, not operate? Yes, no, I lie awake beside David every night, going through it, pros on the left, cons on the right, until I hear the clock at the bus station striking two, then three, then four. I do a lot of praying now too. Father Kelly doesn't say much, but he does his best, and every week we are on the prayer list at Mass.

Mary (7:31): I just keep wishing an angel would appear at the bottom of my bed, like Gabriel did to Marion and tell me what to do. It's I guess I shouldn't giggle, but it's a funny thought.

Mary (7:57): I sometimes wonder whether, if I, if I cling on to her tight enough it'll make some difference. I pull her close, close, close to me so I can hear her heart beating, that little heart nearly four, and they say her heart's still not much bigger than a walnut after every beat, I wait, hear the next beat, breathe out and wait again. I sometimes feel I've spent my life waiting, waiting for Sam, who said he cared, said to give him time, said he would come back for me, never did. And then, and then waiting for David who, bless him, hung back until in the end, I was the one who made the move, and then he stepped up with the engagement ring, great, and then waiting for just the right time to start our family, waiting for just the right few days in any month, using that thermometer like clockwork and God help us, ringing David at work so he'd come back home right now this minute so we could and then waiting every four weeks, afraid I'd bleed, and then waiting through the first trimester, afraid I'd bleed, and then bleeding, and then trying again and again and. 12 whole years, waiting, praying, trying to work out what was wrong, wondering if it's me, and answering the winks and innuendos, caring questions, until after a while, no one dared ask.

Mary (10:28):Barren's a vicious word.

Mary (10:37): And then the worst waiting of all, because there was no bleeding. Everything was fine.

Mary (10:51): I should have felt happy. David was happy, but God, the waiting killed me.

Mary (11:02): Month after month after month of feeling her inside me and waiting for the tiny movements to stop, expecting them to stop, never believing they wouldn't stop. But they didn't stop. She kept going, kept moving, kept fighting. Her heart kept beating.

Mary (11:30): And then we had a whole full month to go. She decided she'd had enough of waiting. Ambulance to A&E. 32 hours of pushing and then screaming for a pillow to get my legs in the right place and out she came, my miracle child, tiny, Perfect, perfect, tiny, clinging on to life those first weeks. She's always been a clear, oh, I don't mean she's needy. She's her own girl, but, but when she cuddles up, she's solid, hanging on there. When she was feeding, she she'd almost have my breast off. She was so desperate for it. And they tell me now that she was desperate, she knew she wasn't thriving. She needed all the food she could get, so she clung on and sucked and sucked and sucked and bit. I loved it. I even loved the pain of it. This child needs me, wants me, wants me desperately, wants all of me. Nothing's ever come close to that feeling of being needed, of being wanted. She is special. No, seriously, I'm not imagining it sharp as a pin. Sees everything, sees through everything, sees through. David and me for sure, and talks about everything. Didn't speak for nearly 15 months. Then got 30 words that first day after that, we couldn't stop her. Chatter, chatter, chatter, chatter, running commentary. I loved it. Love it. No need for the radio. With her around ever since last winter, since the doctor said she mustn't even walk, that her heart needed the push chair I've wheeled for pushchair 10 Mile walks round the estate so she can get fresh air and I can stay balanced. We talk the whole way about anything, busses, cars, dogs, cats, people. Oh, people, we walk past the houses and look through the windows and tell each other these long stories about who lives inside, story after story after story, her stories are better than mine.

Mary (14:21): I really don't want to admit this, but right now, now I know I have to decide it feels like if I let myself stop thinking, I'll be so frightened that I won't be able to move. I'll just fall away from everything with nothing left to cling to. No one there to catch me. Thing is, my whole life, no one's been able to catch me. Pops was good, but he didn't know how. And after mama had gone, he really didn't know how. So we kids did it ourselves. All of it for us and for him, had to and now still, no one catching me. Oh, those doctors, they tried, but they couldn't get me pregnant, and then they couldn't keep me pregnant. And now they try to tell me it'll be okay, but I can see they believe they'll lose her, and they feel helpless with that, David's helpless, too generous, bless him, but helpless. I learned pretty early on that leaving me free is really just stepping back because he doesn't have a clue what to do, not even what to say, poor man, that's what his handing this decision to me is all about. He just wants to not have to catch me. And I get that. I get that. Hey, God, come on, please, pretty please, just for once, catch me, send that angel, make another miracle, or at the very least, just say something. I admit it. I'm not the saint I should be. I don't care for David as I should. I don't have that rock solid faith father Kelly talks about from now on, I promise I'll be better. God, is there any room for bargaining here? The problem is, just at the moment, I'm so frightened that I'm not sure I've got anything to bargain with. I'm not sure I can do anything really right now, all I can do is take her for 10 Mile walks and keep clinging on.

Mary (16:59): What what terrifies me most is I can't see the future. Her at eight, making her first communion; 12, going to big school; 18, leaving home. I can't see any of it. Will she be able to have sex? Babies?

Mary (17:18):Can't imagine it. It's easier to imagine what I have now,

Mary (17:32): day after day, night after night, feeling her heartbeat, feeling it happen, as they've said, it would happen in time, if nothing's done. Her heart gradually slowing, slowing, slowing,

Mary (17:57): mine slowing, along with hers. And I can imagine the other

Mary (18:06): her body on the table, the harsh lights, machines humming the calm, focused voices, and then and then the voices raised, the machine stuttering the long bleep, the long silence.

Mary (18:21): I can imagine that too, because I know about that.

Mary (18:30): It's happened twice before, twice two still tiny bodies lifted from between my legs and carried away, out of my sight. I know about long silences.

Mary (18:53): Stop it. Just Just stop it. This isn't what you do. So think woman, think, make the decision. But I can't. I can't, and it seems like no one can. No one's up for this decision. No, no. And this is it. This is what it is. No one wants the responsibility of it, and that so fucks me off. You doctors, you're the professionals. You're bringing all your expertise and training and skill how to heal her, how to save her, how to give her back to me. Heart unbroken when it comes to the crunch. You're not willing to do that, are you? You'll let me do the hard bit, let me do the deciding. And after it's all over, one way or the other, you'll simply walk away without a word. And David, I haven't said this to you, I guess I'll never say this to you, but something broke in me when you told me it was my choice, if only for once in your life, you'd willing to stand beside me, talk to me, cling to me while we decided together, but in the name of leaving me free to decide, you step back so far, you weren't there anymore, and that left just me and her.

Mary (20:36): What about you? God? All Powerful, all seeing, all compassionate, that silent Christ figure on the side altar at church, the Sacred Heart cracked down the middle with love for us all. But I notice you never actually do anything. Do you? You give us free will, a fine gift, but then if we take that free will and use it to make the wrong decision, it mysteriously becomes our fault. You're left innocent, you with your fucking bleeding heart, and we're left with the guilt forever.

Mary (21:22):It's not going to going to be like that. I'm not going to let it be like that.

Mary (21:31): All of you. You needn't bother anymore.

Mary (21:39): I can do this all on my own, for her, with her. That's it, isn't it, with her, with her, with her. Always.

Mary (22:07): Okay, I get it. There's only one decision, really, isn't there? I know that. I know what to do.

Mary (22:29): Except, except...

James (22:39): The Torn Project is really grateful to the author of this piece for sharing their experience so generously. If you have been affected by this story and want someone to talk to, we suggest contacting Befrienders Worldwide at https://befrienders.org. Their need to talk page will direct you to a helpline in your country or region.

James (23:07): If you're interested in knowing more, the show notes will offer you not only a transcript of the podcast, but also link you to helpful resources on our website at the tornproject.com and please do follow us on Instagram at the torn project for regular stories, resources and Hope for all things in a conflict.