Your mermaid looks so good and that picture of her with her aunt is like a gorgeous reflection of genes. It is a miracle of love and of strength that you have survived this and that Sophie has too. There is no power greater than the sort of love you have for your daughter.
Your Sophie looks so much better. What a relief it must be for you all.
As someone who has been in and out of hospitals and surgeries for the past couple of years I advocate a "no kidding" attitude while keeping your cool, esp with the junior staff. Be nice only to those who treat you well, stay neutral with the rest, they don't deserve any emotional link or respect or gratitude. Don't waste your energy on them. Don't let them in.
Looking at the photo of Jennifer and Sophie, Chagall's "I and the Village" came to mind. Sophie's eyes, her clear gaze, her hands, and her connection with Jennifer are profoundly beautiful. Sending love and honoring you for your faithfulness in your role as fierce advocate and loving mother to Sophie. What a relief to know that Sophie is clearly feeling better.
I think one of the biggest ways we unintentionally hurt people is by saying or implying that they should already be at the end of a hard road rather than walking the road they are actually on.
I'm not a huge fan of suctioning but it does get easier. It's amazing what we can get used to, a new normal. We keep going because the alternative sucks.
Sophie looks good.
I get pissed too, especially when I don't want to do something but I still have to do it. Life just got harder and you're just supposed to deal with it. Sending hugs and love Elizabeth.
I agree that being "nice" in a hospital never gets one anywhere. Keep on advocating and being fierce. I'm glad that steady progress is being made. Keeping you and Sophie in my heart.
Elizabeth -- I was thinking of you tonight just before this newsletter arrived. I double checked my 'promotions' folder and even spam to see if I had missed an email. I was worried about Sophie, and you. Then just now, Hospital Time, Part 5 arrived at the top of my inbox. Thank you for continuing to write your caregiving story in real time. I I read every single email and I keep your writing close. Glad to hear Sophie is ok, you are ok, even if everything is kind of not ok. With love, Katie
Sophie looks good! She’s been to hell and back (as have you) and yet... there she is with her eyes wide and deep enough to take it all in. May all that is good and holy (in the widest sense of the word) accompany you both in this “after.”
I learned the hard way about the dangers of being nice to doctors in the hospital. At the start of our nightmare, when Haya was one year old and had her first status epilepticus experience our submission got her six weeks of non- stop seizing. Our doctor at that time had no clue of how to stop them and refused to consult with another neurologist. His incompetence gave Haya permanent brain damage, we were told afterwards. Bottom line: Sophie looks wonderful and it's thanks to your amazing tenacity! Hoping that your next post will be from home and wishing you the strength you will need for that.
I'm glad Sophie is better, but how could you not be feeling frustration? Especially in the face of such absurdities, even if well-meant. I love how you casually threw the shooting on the 10 in there, in the same way that all of us have learned to casually absorb such horrors.
Avoid hospitalists like the plague. In an attempt to prove they are grown-up doctors they will change Sophie's meds and tell you all the other doctors are wrong about everything. You will spend an inordinate amount of time when Sophie comes home trying to undo the harm they have done. Do not ask why I know this. Just take it on trust.
Your mermaid looks so good and that picture of her with her aunt is like a gorgeous reflection of genes. It is a miracle of love and of strength that you have survived this and that Sophie has too. There is no power greater than the sort of love you have for your daughter.
You humble me. You humble us all.
Your Sophie looks so much better. What a relief it must be for you all.
As someone who has been in and out of hospitals and surgeries for the past couple of years I advocate a "no kidding" attitude while keeping your cool, esp with the junior staff. Be nice only to those who treat you well, stay neutral with the rest, they don't deserve any emotional link or respect or gratitude. Don't waste your energy on them. Don't let them in.
Looking at the photo of Jennifer and Sophie, Chagall's "I and the Village" came to mind. Sophie's eyes, her clear gaze, her hands, and her connection with Jennifer are profoundly beautiful. Sending love and honoring you for your faithfulness in your role as fierce advocate and loving mother to Sophie. What a relief to know that Sophie is clearly feeling better.
I think one of the biggest ways we unintentionally hurt people is by saying or implying that they should already be at the end of a hard road rather than walking the road they are actually on.
I'm not a huge fan of suctioning but it does get easier. It's amazing what we can get used to, a new normal. We keep going because the alternative sucks.
Sophie looks good.
I get pissed too, especially when I don't want to do something but I still have to do it. Life just got harder and you're just supposed to deal with it. Sending hugs and love Elizabeth.
I agree that being "nice" in a hospital never gets one anywhere. Keep on advocating and being fierce. I'm glad that steady progress is being made. Keeping you and Sophie in my heart.
Elizabeth -- I was thinking of you tonight just before this newsletter arrived. I double checked my 'promotions' folder and even spam to see if I had missed an email. I was worried about Sophie, and you. Then just now, Hospital Time, Part 5 arrived at the top of my inbox. Thank you for continuing to write your caregiving story in real time. I I read every single email and I keep your writing close. Glad to hear Sophie is ok, you are ok, even if everything is kind of not ok. With love, Katie
Sophie looks good! She’s been to hell and back (as have you) and yet... there she is with her eyes wide and deep enough to take it all in. May all that is good and holy (in the widest sense of the word) accompany you both in this “after.”
I learned the hard way about the dangers of being nice to doctors in the hospital. At the start of our nightmare, when Haya was one year old and had her first status epilepticus experience our submission got her six weeks of non- stop seizing. Our doctor at that time had no clue of how to stop them and refused to consult with another neurologist. His incompetence gave Haya permanent brain damage, we were told afterwards. Bottom line: Sophie looks wonderful and it's thanks to your amazing tenacity! Hoping that your next post will be from home and wishing you the strength you will need for that.
I'm glad Sophie is better, but how could you not be feeling frustration? Especially in the face of such absurdities, even if well-meant. I love how you casually threw the shooting on the 10 in there, in the same way that all of us have learned to casually absorb such horrors.
Avoid hospitalists like the plague. In an attempt to prove they are grown-up doctors they will change Sophie's meds and tell you all the other doctors are wrong about everything. You will spend an inordinate amount of time when Sophie comes home trying to undo the harm they have done. Do not ask why I know this. Just take it on trust.
"because of a shooting on the 10." ye gods, what have we come to! here's a cheer for your fierce mother questions and your beautiful Sophie.
Sending blessings to you both 🙏🏻