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Tanya Lord's avatar

So well said Kathleen. I am always suprised by people's response when I say "My son will likely die" they respond with "Don't give up hope." The reality is that he is likely going to die. I will lose another child because, as you say, the system has failed him. I am not preparing for his death, simply living in full awareness of the reality. Of course this is sad but it makes me love more freely and more fiercely. That is what keeps me hoping. Let's all start talking more about death,grief and love. They are all beautifully and heartbreakingly intertwined.

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ISO's avatar

I am so grateful right now .. I was just checking out substack and landed right here… 4 minutes later I’m weeping .. everyone here, I’m so sorry for your suffering. I cannot manage my own and want to learn how to .. navigate … to a place where I may have something to contribute. I’ve withdrawn into total isolation - I care for a toddler a few hours a week and the remainder of my hours I am closed in my room, lost since 2017. Lost-thank you for the grace and candor .. it’s .. hard for me to even engage .. I want to learn to not be a drain .. to regain any semblance of purpose or service.. anyhoo.. bless you all!

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