I was so sure I had commented here, but it doesn't seem to have posted. I'm sorry it didn't. I wanted you to know I was pulling hard in solidarity with you, praying for Sophie's healing and your peace, and that you would escape infection yourself. I am so glad you have a community of angels around you. There is nothing better in time of sickness or need than angel friends.
Tears of rage embracing tears of grief. Tears of joy that Sophie has turned the corner, resting so peacefully with you nearby. Beauty does walk a razor's edge. No easy answers. Sending love always. Your loving photos of Sophie move me deeply, Elizabeth.
As bad as the health care system in this country has been for a very long time, covid has made it so much worse. One of my daughters works as a nurse in a postpartum unit and the way she describes the frustration and unhappiness of the nurses, the understaffing, the impossible work loads, makes me afraid for any patient who may need special attention these days. She, too, is looking for an alternative career option.
You could write a library shelf's worth of books on the horrible experiences you've had in the health care realm with Sophie. And I have no doubt that the mass majority of parents of disabled children could each write their own shelf's worth.
Now. With the help of your friends, your neighbors, your innate wisdom and determined grit, I hope that Sophie continues to improve. I would say that I wish things would change in our society and maybe slowly, one day they will, but I'm not wasting much hope on that one.
I'm fucking sick and tired of people who want their freedoms but none of the responsibilities. And you're right, disabled people are at the bottom of the list when it comes to things we care about in our society. I'm glad Sophie has turned a corner, thankful for your wonderful neighbors and friends and thankful for including Jeneva's eloquent writing.
On Saturday I sat next to a man at the spray park who seemed friendly and normal at first. We were both watching our granchildren play in the water. And then he started to explain to me about how trump would be back in the Whitehouse by Christmas and I walked away from him. What I wanted to do to him, throw a bag of flaming dog shit at him, but I settled on walking away as I was fresh out of dog shit:)
As for private health care, it makes my blood boil!
I'm glad Sophie seems to have turned the corner toward recovery. Your words, and Jeneva's, are a powerful reminder that many of us live with little day-to-day awareness of what it takes to parent a disabled child in these times. I've never heard of a mobile rehydration service -- it's so interesting that anyone even SAW that niche in the market! That first "clinic" sounds like a terrible place, and one to avoid in the future.
I have been thinking of Sophie, and you too. I am glad she seems to be on the upswing of it all and Jeneva's words echo what have been rattling around in my mind since the CDC recommendations came out last week, and the HCBS services being cut. It's hard to feel like anyone outside of the disability community cares at all about our lives anymore.
I am So So glad Sophie is getting better. And I double join you in your response to the CDC/people and COVID. I am tired of feeling like I am living with Rod Serling and that I’ve joined him in some world and he keeps saying you are about to enter another dimension. Hell, I, along with many others, including you, have been living in another dimension of the mind and there is nothing wondrous about it! But I digress. I feel ya, as the kids say and I refuse to get COVID because I want to keep living even if it is me abd Rod. Take some sun. Be well.
I am literally crying. Thank you for reminding us that anger is important, that there is no obligation to stick to polite platitudes in order to avoid discomfiting the comfortable.
I love you, your long sentences, your anger, your steadfastness, more long sentences, and the lengths you’ll go to for hangover cures 🤪. Bad joke aside, glad Sophie is turning the corner. Wish I could bring you choc-covered banana bread, and steal a few bites. 😘😘
I was so sure I had commented here, but it doesn't seem to have posted. I'm sorry it didn't. I wanted you to know I was pulling hard in solidarity with you, praying for Sophie's healing and your peace, and that you would escape infection yourself. I am so glad you have a community of angels around you. There is nothing better in time of sickness or need than angel friends.
Tears of rage embracing tears of grief. Tears of joy that Sophie has turned the corner, resting so peacefully with you nearby. Beauty does walk a razor's edge. No easy answers. Sending love always. Your loving photos of Sophie move me deeply, Elizabeth.
I'm so sorry people are so uncaring. She looks peaceful on the blanket. We need to be angry.
I’m so glad Sophie’s getting better and you’ve evaded it. Yes, rage is necessary these days. Thankful for those good neighbors and friends. Much love.
Xoxo
Barbara
As bad as the health care system in this country has been for a very long time, covid has made it so much worse. One of my daughters works as a nurse in a postpartum unit and the way she describes the frustration and unhappiness of the nurses, the understaffing, the impossible work loads, makes me afraid for any patient who may need special attention these days. She, too, is looking for an alternative career option.
You could write a library shelf's worth of books on the horrible experiences you've had in the health care realm with Sophie. And I have no doubt that the mass majority of parents of disabled children could each write their own shelf's worth.
Now. With the help of your friends, your neighbors, your innate wisdom and determined grit, I hope that Sophie continues to improve. I would say that I wish things would change in our society and maybe slowly, one day they will, but I'm not wasting much hope on that one.
I'm fucking sick and tired of people who want their freedoms but none of the responsibilities. And you're right, disabled people are at the bottom of the list when it comes to things we care about in our society. I'm glad Sophie has turned a corner, thankful for your wonderful neighbors and friends and thankful for including Jeneva's eloquent writing.
On Saturday I sat next to a man at the spray park who seemed friendly and normal at first. We were both watching our granchildren play in the water. And then he started to explain to me about how trump would be back in the Whitehouse by Christmas and I walked away from him. What I wanted to do to him, throw a bag of flaming dog shit at him, but I settled on walking away as I was fresh out of dog shit:)
As for private health care, it makes my blood boil!
Sending hugs and love.
<3
I'm glad Sophie seems to have turned the corner toward recovery. Your words, and Jeneva's, are a powerful reminder that many of us live with little day-to-day awareness of what it takes to parent a disabled child in these times. I've never heard of a mobile rehydration service -- it's so interesting that anyone even SAW that niche in the market! That first "clinic" sounds like a terrible place, and one to avoid in the future.
I have been thinking of Sophie, and you too. I am glad she seems to be on the upswing of it all and Jeneva's words echo what have been rattling around in my mind since the CDC recommendations came out last week, and the HCBS services being cut. It's hard to feel like anyone outside of the disability community cares at all about our lives anymore.
Dear Elizabeth.
I am So So glad Sophie is getting better. And I double join you in your response to the CDC/people and COVID. I am tired of feeling like I am living with Rod Serling and that I’ve joined him in some world and he keeps saying you are about to enter another dimension. Hell, I, along with many others, including you, have been living in another dimension of the mind and there is nothing wondrous about it! But I digress. I feel ya, as the kids say and I refuse to get COVID because I want to keep living even if it is me abd Rod. Take some sun. Be well.
I am literally crying. Thank you for reminding us that anger is important, that there is no obligation to stick to polite platitudes in order to avoid discomfiting the comfortable.
I am so glad Sophie is getting better.
I love you, your long sentences, your anger, your steadfastness, more long sentences, and the lengths you’ll go to for hangover cures 🤪. Bad joke aside, glad Sophie is turning the corner. Wish I could bring you choc-covered banana bread, and steal a few bites. 😘😘
I hope Sophie continues to feel better. I hope you remain healthy. This can be a really shitty world.