Mothers of children with terminal or life-shortening diagnoses, please, speak to me.
My daughter has a cough and I am grieving. This is wrong, this is unreal, this is not what nature intended. Many, many, too many, of the children at her preschool have a cough right now. Her cough is their cough. Their parents are not grieving.
My daughter has cystic fibrosis. Any respiratory infection she gets could, in fact, reduce her lifespan. Make her die younger. Make her die sooner. Steal her days. CF is a game of avoiding lung damage as long as you can, to forestall the day when you are told that the next step is a double lung transplant or coming to an acceptance of your imminent mortality. CF is an incurable, terminal, genetic disease that children and adults die from. CF is what they said when they called me when she was 5 weeks old. I am trapped in that moment, in that phone call, still bleeding, still there.
She's three now, and she has a cough, and it's night time, and in the dark, I am grieving.
This isn't right. This isn't reasonable. This isn't realistic. This is, however, my life right now.
Tell me how you breathe in the dark when you know your child will die. I know, oh, now I am blighted to know, that all our children will die. Would that I were a better, more coherent Catholic, that I could blunt that awareness. We're supposed to die first, as grandmothers, and not know, never confront, never feel it, never face it.
My daughter has a cough. A stupid cough. A trivial cough. And I am grieving.
Someone save us. Please.
My daughter has a cough and I am grieving. This is wrong, this is unreal, this is not what nature intended. Many, many, too many, of the children at her preschool have a cough right now. Her cough is their cough. Their parents are not grieving.
My daughter has cystic fibrosis. Any respiratory infection she gets could, in fact, reduce her lifespan. Make her die younger. Make her die sooner. Steal her days. CF is a game of avoiding lung damage as long as you can, to forestall the day when you are told that the next step is a double lung transplant or coming to an acceptance of your imminent mortality. CF is an incurable, terminal, genetic disease that children and adults die from. CF is what they said when they called me when she was 5 weeks old. I am trapped in that moment, in that phone call, still bleeding, still there.
She's three now, and she has a cough, and it's night time, and in the dark, I am grieving.
This isn't right. This isn't reasonable. This isn't realistic. This is, however, my life right now.
Tell me how you breathe in the dark when you know your child will die. I know, oh, now I am blighted to know, that all our children will die. Would that I were a better, more coherent Catholic, that I could blunt that awareness. We're supposed to die first, as grandmothers, and not know, never confront, never feel it, never face it.
My daughter has a cough. A stupid cough. A trivial cough. And I am grieving.
Someone save us. Please.
