I still think about Miss Katie and the what ifs. My middle daughter is getting married and Miss Katie won't marry, in fact it's doubtful that Miss Katie could even attend the wedding which is so sad. She won't be a maid of honour and won't throw her sister a wedding shower. I imagine her sister carries her own grief too, not having a sister she can talk to, to call after a hard day, call to complain about their mother.
Miss Katie has her first grey hairs now which saddens me somehow. She's never kissed a boy and now she's turning grey. This is our grief, the grief of the mothers that we don't talk about, that people dismiss, that others don't understand. But it is still grief that we carry with us.
Thank you for introducing me to Jack Gilbert. There were these lines in a poem of his, The Lost Hotel of Paris. They made me cry.
I'm glad you came to the page to reach out. I'm happy that the comfort of your friends sustains you. I share your sorrow for all the things Sophie will not do in her life. I understand your anger at a god who does not exist. Why in the world should you and Sophie suffer so? Why any of us? It makes no sense and I suppose it is not meant to. I'm sending my love to you and your Sophie.
It even looks like your page from years and years ago.
I'm sorry for the seizure that broke through after such a quiet time. You encourage me to write again. I feel like we all found each other on social media, but I miss the community of disability life blogging too. It was the one place on the interwebs that I didn't feel like the only person in the whole world who was living like this.
I am so grateful for your own existence in this world, and your ability to express it, including the utter weariness that can make such expression so difficult.
And so it goes in the be here now… In the flow, with love, gentleness, anger, lying spent. being with her in those times is all there is until it’s done. Until the next time.
Strength and love for the next time. And on it goes.
Thank you for the privilege it is to “share” in the experience through your writing.
there is no way I can ever understand or comprehend the challenges you are facing. But your writing about it, the way you explain and report and share over so many years, the joy and the pain and the obstacles and the anger and the courage and your determination, all that has given me a sense of the meaning of life and living I would not have experienced otherwise. Thank you.
I don't have words of wisdom but I hope to offer comfort that you are not alone. I don't comment often but am here. Our children are very close in age and quite similar. This road can be isolating but I enjoy reading your posts as I also share many of your concerns, thoughts...
Elizabeth my darling good girl. I woke to early dark this morning feeling desolate and lost to find your words waiting for me and I am stunned and humbled and pulled out of my own grief to share another this glimpse into your extraordinary life. Thank you for returning here to remind me of what is real of a larger sense of the world. I’m so glad I found you and Sophie your fire your utter human-ness.
I still think about Miss Katie and the what ifs. My middle daughter is getting married and Miss Katie won't marry, in fact it's doubtful that Miss Katie could even attend the wedding which is so sad. She won't be a maid of honour and won't throw her sister a wedding shower. I imagine her sister carries her own grief too, not having a sister she can talk to, to call after a hard day, call to complain about their mother.
Miss Katie has her first grey hairs now which saddens me somehow. She's never kissed a boy and now she's turning grey. This is our grief, the grief of the mothers that we don't talk about, that people dismiss, that others don't understand. But it is still grief that we carry with us.
Thank you for introducing me to Jack Gilbert. There were these lines in a poem of his, The Lost Hotel of Paris. They made me cry.
We look up at the stars and they are
not there. We see the memory
of when they were, once upon a time.
And that too is more than enough.
I'm glad you came to the page to reach out. I'm happy that the comfort of your friends sustains you. I share your sorrow for all the things Sophie will not do in her life. I understand your anger at a god who does not exist. Why in the world should you and Sophie suffer so? Why any of us? It makes no sense and I suppose it is not meant to. I'm sending my love to you and your Sophie.
Elizabeth, I really have no words. You are a shard of light, cutting through darkness.
It even looks like your page from years and years ago.
I'm sorry for the seizure that broke through after such a quiet time. You encourage me to write again. I feel like we all found each other on social media, but I miss the community of disability life blogging too. It was the one place on the interwebs that I didn't feel like the only person in the whole world who was living like this.
It’s cliche, but I’m left without words. The others have said what I would have. Your words are powerful.
I am so grateful for your own existence in this world, and your ability to express it, including the utter weariness that can make such expression so difficult.
Dear Elizabeth,
And so it goes in the be here now… In the flow, with love, gentleness, anger, lying spent. being with her in those times is all there is until it’s done. Until the next time.
Strength and love for the next time. And on it goes.
Thank you for the privilege it is to “share” in the experience through your writing.

Sandra

Dear Elizabeth,
there is no way I can ever understand or comprehend the challenges you are facing. But your writing about it, the way you explain and report and share over so many years, the joy and the pain and the obstacles and the anger and the courage and your determination, all that has given me a sense of the meaning of life and living I would not have experienced otherwise. Thank you.
I don't have words of wisdom but I hope to offer comfort that you are not alone. I don't comment often but am here. Our children are very close in age and quite similar. This road can be isolating but I enjoy reading your posts as I also share many of your concerns, thoughts...
I am grateful to be here, even if bearing witness is all I can do. I am richer by far for having found you, and for loving you, and loving yours.
We're still here, still with you.
I can’t say it better than the others here have. Much love to you and darling Sophie.
Xoxo
Barbara
Elizabeth, this was absolutely beautiful, heart-wrenching, and honest. Thank you for sharing your words with us.
Elizabeth my darling good girl. I woke to early dark this morning feeling desolate and lost to find your words waiting for me and I am stunned and humbled and pulled out of my own grief to share another this glimpse into your extraordinary life. Thank you for returning here to remind me of what is real of a larger sense of the world. I’m so glad I found you and Sophie your fire your utter human-ness.
Love
Rebecca
love you, your writing, jack gilbert, his writing. a faraway hug from a chilly morning in Maine; it gets warmer as the day expands...