Elizabeth. I have been reading your posts for years now, since you started I believe. My wife was a child development and director of a non-profit agency that provides benefits to disabled kids (we're both retired now. I'm an English major and memoir writer and voracious reader and one day she said to me "you've got to read this woman's posts, you'll love it". With that brief background I wanted to say that I absolutely love every post of yours and look forward to them. But I would add that over the years there have been maybe 8-10 posts that just absolutely blow my mind. This was one of those. Beautiful writing, just SO Elizabeth Aquino. Thank you for all the words you have put in my head, and all the emotions. Merry Christmas to you and your family from ours. We need an update on the boys! And oh yeah, I forgot to say, I'm Italian also! Cheers ~TJ
Increasingly I see that there is a direct correlation between the urge of spending millions on homes/gadgets/things and killing thousands and thousands of people. Is it a show of power, (admittedly foolish) search meaning in a meaningless, boring life? A numbers thing? Maybe it's capitalism.
Maybe its the ugly side of the coin we call being human.
Also, how can we ever trust doctors when we have experienced what you have? What I have? What are our choices?
Noticing. We're trained not to notice. Not to see. To unsee. To unsee people who are disabled, poor, other.
Once we notice, we can't unsee any more. And it's almost too much. We have to let it all in. If we're going to let in the pain and suffering, then we must let in the beauty and compassion too or risk losing our minds.
Disabled people are treated like "less than". The last time Katie broke her arm, the doctor in ER told her caregivers to give her tylenol. She has not gone to ER without me since then. Sadly, this is not limited to disabled people. I so often here from patients about doctors who missed their cancer symptoms, because they were too young (the patient), or female. Doctors are human with their own biases, something we forget. Doctors are people with a very specific education, but otherwise, no different than the rest of us.
As for Gaza, I feel sick to my heart. Both Hamas and the Israeli government are willing to sacrifice countless innocent people to achieve their aim, whatever that is. It's a pissing contest with dire consequences for all those caught in the crossfire, and as always, children die or are so traumatized, they grow up to be severely fucked up adults. And so it continues. Why can't those men see this? They are ensuring this conflict will go on for generations.
Elizabeth, this went right to my heart (as your writing so often does). Thank you for putting your thoughts out here to share with us; I’m grateful for how it connects us across the miles. I’m so sorry for the way the doctors have neglected Sophie’s symptoms with such harmful results, not to mention the way they treat her. Your comments on how life is valued around here are much like my own thoughts about that. Teachers, nurses and first responders deserve those big salaries, in my book. Have you heard the beautiful chorale version of the poem you quoted? If not, I have it and can send you a link. It’s absolutely otherworldly-sublime and uplifiting. Sending love, as always ♥️
Keep watching those beautiful sunsets! Those little emotional boosts are so important amid all the craziness. Did I tell you Dave and I will be in LA in February? I hope we can meet up! I'll e-mail you.
Yes, as you do: “try to praise the mutliated world.” The sunset tonight made me cry as well. Thank you as always for your words in the world and your fierce advocacy for your beloved daughter. doctors need to listen ESPECIALLY when their patient is disabled!
Yes. A friend reminded me today that opposite things can both be true. Shit and joy can coexist because the human race seemingly can’t. Much love to you and Sophie. Hope there is much more joy ahead.
The thing to me is this- that doctors ever ignore what a parent says. You know Sophie inside and out. You know her normal. HER normal. And thus, you know when something is off and needs paying attention to. For that initial physician to toss off your concerns with such glib non-answers is tantamount to negligence. This can also happen when the patient does not have disabilities, especially infants. The parent, often the mother, literally speaks for the child. Of course, you will always be that parent for Sophie. In a way, her translator. And as such, there is no excuse for a doctor to ignore your worries.
I've been a lurker on your page(s) for a long time now. Mostly because of your excellent writing and your thoughtful observations. But also, because as a parent I can't imagine what it feels like in your situation. But now I have a 55 year old brother who has developed (?) a seizure disorder and has lost his short term memory. He lives in a care home and just spent a few days in the hospital because he had a seizure and aspiration pneumonia - likely related - but who knows. I live across the country, our parents are dead, no other siblings, he's divorced and he doesn't have a relationship with either of his young adult children. He isn't unhappy in his life per se, but because of the memory loss, he's always a little confused and doesn't do much. I question the value of his life all the time. Wishing you and your family a calm, healthy and peaceful 2024.
I knew you had been through a lot with Sophie's hospitalization last year, but somehow, reading the (parenthetical) lead up to it, the gross negligence on the part of medical professionals, is grueling and enraging. Oh Elizabeth. I honestly have no words. Except to say, I am saved to read the things you notice, you help me understand that I am not crazy, i notice some of these things, too. And I love you.
How biased we are. Shouldn’t it be so simple? To house people. To care. To stop bombing children?
My heart breaks with yours and my heart marvels with yours too. Solstice blessings.
Elizabeth. I have been reading your posts for years now, since you started I believe. My wife was a child development and director of a non-profit agency that provides benefits to disabled kids (we're both retired now. I'm an English major and memoir writer and voracious reader and one day she said to me "you've got to read this woman's posts, you'll love it". With that brief background I wanted to say that I absolutely love every post of yours and look forward to them. But I would add that over the years there have been maybe 8-10 posts that just absolutely blow my mind. This was one of those. Beautiful writing, just SO Elizabeth Aquino. Thank you for all the words you have put in my head, and all the emotions. Merry Christmas to you and your family from ours. We need an update on the boys! And oh yeah, I forgot to say, I'm Italian also! Cheers ~TJ
What a gift to live by the ocean looking west!
Increasingly I see that there is a direct correlation between the urge of spending millions on homes/gadgets/things and killing thousands and thousands of people. Is it a show of power, (admittedly foolish) search meaning in a meaningless, boring life? A numbers thing? Maybe it's capitalism.
Maybe its the ugly side of the coin we call being human.
Also, how can we ever trust doctors when we have experienced what you have? What I have? What are our choices?
May the new year bring you better times.
“how subtle it is, how biased we the abled are in determining what makes and gives a person a life and integrity” God, yes.
And it is, it is that easy. Dismantling the systems that make it hard is something more.
That sky. That sky!
Thank you for sharing your brilliant and heartbreaking observations. Love to you and the family ❤️
Noticing. We're trained not to notice. Not to see. To unsee. To unsee people who are disabled, poor, other.
Once we notice, we can't unsee any more. And it's almost too much. We have to let it all in. If we're going to let in the pain and suffering, then we must let in the beauty and compassion too or risk losing our minds.
I'm glad you noticed the sunset, too.
Disabled people are treated like "less than". The last time Katie broke her arm, the doctor in ER told her caregivers to give her tylenol. She has not gone to ER without me since then. Sadly, this is not limited to disabled people. I so often here from patients about doctors who missed their cancer symptoms, because they were too young (the patient), or female. Doctors are human with their own biases, something we forget. Doctors are people with a very specific education, but otherwise, no different than the rest of us.
As for Gaza, I feel sick to my heart. Both Hamas and the Israeli government are willing to sacrifice countless innocent people to achieve their aim, whatever that is. It's a pissing contest with dire consequences for all those caught in the crossfire, and as always, children die or are so traumatized, they grow up to be severely fucked up adults. And so it continues. Why can't those men see this? They are ensuring this conflict will go on for generations.
Thank you again dear friend.
Sending love to you and Sophie and H+O+C at this Christmas Solstice time of darkness and light. Grief and hope.
Elizabeth, this went right to my heart (as your writing so often does). Thank you for putting your thoughts out here to share with us; I’m grateful for how it connects us across the miles. I’m so sorry for the way the doctors have neglected Sophie’s symptoms with such harmful results, not to mention the way they treat her. Your comments on how life is valued around here are much like my own thoughts about that. Teachers, nurses and first responders deserve those big salaries, in my book. Have you heard the beautiful chorale version of the poem you quoted? If not, I have it and can send you a link. It’s absolutely otherworldly-sublime and uplifiting. Sending love, as always ♥️
Keep watching those beautiful sunsets! Those little emotional boosts are so important amid all the craziness. Did I tell you Dave and I will be in LA in February? I hope we can meet up! I'll e-mail you.
Yes, as you do: “try to praise the mutliated world.” The sunset tonight made me cry as well. Thank you as always for your words in the world and your fierce advocacy for your beloved daughter. doctors need to listen ESPECIALLY when their patient is disabled!
Yes. A friend reminded me today that opposite things can both be true. Shit and joy can coexist because the human race seemingly can’t. Much love to you and Sophie. Hope there is much more joy ahead.
Xoxo
Barbara
The thing to me is this- that doctors ever ignore what a parent says. You know Sophie inside and out. You know her normal. HER normal. And thus, you know when something is off and needs paying attention to. For that initial physician to toss off your concerns with such glib non-answers is tantamount to negligence. This can also happen when the patient does not have disabilities, especially infants. The parent, often the mother, literally speaks for the child. Of course, you will always be that parent for Sophie. In a way, her translator. And as such, there is no excuse for a doctor to ignore your worries.
You know all of this.
Loving you.
I've been a lurker on your page(s) for a long time now. Mostly because of your excellent writing and your thoughtful observations. But also, because as a parent I can't imagine what it feels like in your situation. But now I have a 55 year old brother who has developed (?) a seizure disorder and has lost his short term memory. He lives in a care home and just spent a few days in the hospital because he had a seizure and aspiration pneumonia - likely related - but who knows. I live across the country, our parents are dead, no other siblings, he's divorced and he doesn't have a relationship with either of his young adult children. He isn't unhappy in his life per se, but because of the memory loss, he's always a little confused and doesn't do much. I question the value of his life all the time. Wishing you and your family a calm, healthy and peaceful 2024.
I knew you had been through a lot with Sophie's hospitalization last year, but somehow, reading the (parenthetical) lead up to it, the gross negligence on the part of medical professionals, is grueling and enraging. Oh Elizabeth. I honestly have no words. Except to say, I am saved to read the things you notice, you help me understand that I am not crazy, i notice some of these things, too. And I love you.