Alison Chandra (she/her)
@alisonchandra.bsky.social
Pediatric home health RN and mom to a medically complex child. Passionate about inclusion, disability rights, the Oxford comma, and cheese.
This is the text I’ve sent my friends, in case you need a script.
May 21, 2025 at 5:36 PM
This is the text I’ve sent my friends, in case you need a script.
We got to meet the senator back in 2018 on one of our trips to DC with our @littlelobbyists.bsky.social crew. He was warm and kind and genuinely interested in our little family and Ethan’s healthcare story.
April 1, 2025 at 5:48 AM
We got to meet the senator back in 2018 on one of our trips to DC with our @littlelobbyists.bsky.social crew. He was warm and kind and genuinely interested in our little family and Ethan’s healthcare story.
Spending the day in the forest, sitting next to a fire to stay warm in the cold and just pretending for a little while that none of it is real.
January 20, 2025 at 8:34 PM
Spending the day in the forest, sitting next to a fire to stay warm in the cold and just pretending for a little while that none of it is real.
November 25, 2024 at 1:43 AM
It’s one thing to see stats like this. It’s something else entirely to put faces and names to the numbers.
Meet my friend June.
Meet my friend June.
November 20, 2024 at 6:21 PM
It’s one thing to see stats like this. It’s something else entirely to put faces and names to the numbers.
Meet my friend June.
Meet my friend June.
I need you to understand what’s at stake here. It’s real people, real families, real kids like Ethan and June and so many thousands of others who stand to lose the lives they’ve fought so hard for. It’s kids who won’t be able to go to school, kids who won’t get to live at home with their families.
November 19, 2024 at 7:41 PM
I need you to understand what’s at stake here. It’s real people, real families, real kids like Ethan and June and so many thousands of others who stand to lose the lives they’ve fought so hard for. It’s kids who won’t be able to go to school, kids who won’t get to live at home with their families.
Guess who pays for me to go to my other patient’s home every week, to do spa nights and listen to podcasts and make her laugh and be part of the reason she can live at home with her family and not in an institution? #Medicaid (Photo shared by request of June’s mother, who asked me to speak out.)
November 19, 2024 at 7:27 PM
Guess who pays for me to go to my other patient’s home every week, to do spa nights and listen to podcasts and make her laugh and be part of the reason she can live at home with her family and not in an institution? #Medicaid (Photo shared by request of June’s mother, who asked me to speak out.)
Time went by. Ethan, my son, grew and got stronger. People ask if he’s “fixed” now, and I have to explain that he’ll never truly be out of the woods but that we’re getting really good at camping these days. (Both metaphorically and literally.) With him being more stable, I got to go back to work.
November 19, 2024 at 7:18 PM
Time went by. Ethan, my son, grew and got stronger. People ask if he’s “fixed” now, and I have to explain that he’ll never truly be out of the woods but that we’re getting really good at camping these days. (Both metaphorically and literally.) With him being more stable, I got to go back to work.
The surgery after that one was hard too. (It’s all been hard.) But that’s the one that completed the conversion from half to whole heart. You might remember a bit about that one. The thread I wrote about it went viral and launched me into advocacy. It’s when I started speaking out to #ProtectOurCare
November 19, 2024 at 7:15 PM
The surgery after that one was hard too. (It’s all been hard.) But that’s the one that completed the conversion from half to whole heart. You might remember a bit about that one. The thread I wrote about it went viral and launched me into advocacy. It’s when I started speaking out to #ProtectOurCare
Eventually we kissed him and sent him back into another OR where a pioneering team gave him his first shot at a whole heart instead of the half he was born with. The protections of the #ACA meant that we could give him that shot, that we could choose not just life but the BEST life for him.
November 19, 2024 at 7:08 PM
Eventually we kissed him and sent him back into another OR where a pioneering team gave him his first shot at a whole heart instead of the half he was born with. The protections of the #ACA meant that we could give him that shot, that we could choose not just life but the BEST life for him.
My husband got his green card (and eventually his citizenship) and so we moved off #Medicaid and onto private insurance where the #ACA provided the protections that meant that our little bundle of joy and preexisting conditions could still access the care he needed. He grew. He thrived.
November 19, 2024 at 7:06 PM
#Medicaid paid for the ER visits, the medications and specialists and the second surgery that came before he made it to five months. That was the first time they stopped his heart, the first time I knew that mine was beating while his was still.
November 19, 2024 at 7:04 PM
#Medicaid paid for the ER visits, the medications and specialists and the second surgery that came before he made it to five months. That was the first time they stopped his heart, the first time I knew that mine was beating while his was still.
#Medicaid paid for the rest of my prenatal care. Medicaid paid for Ethan’s birth, for the first surgery when he was 6 days old and they carved the scar into his chest that he’ll carry with him forever.
November 19, 2024 at 7:02 PM
#Medicaid paid for the rest of my prenatal care. Medicaid paid for Ethan’s birth, for the first surgery when he was 6 days old and they carved the scar into his chest that he’ll carry with him forever.
We had been volunteering for nearly six years. My husband was Canadian. We had less than no income. And then the world fell out from beneath us when, on the last day of winter in 2014, I learned that my unborn son had a rare disease that was “likely incompatible with life.”
November 19, 2024 at 6:52 PM
We had been volunteering for nearly six years. My husband was Canadian. We had less than no income. And then the world fell out from beneath us when, on the last day of winter in 2014, I learned that my unborn son had a rare disease that was “likely incompatible with life.”
I had been living and working overseas with an NGO that provides surgical care and health infrastructure development aid to some of the poorest countries in the world when I returned to the States for maternity leave with my second child.
November 19, 2024 at 6:12 PM
I had been living and working overseas with an NGO that provides surgical care and health infrastructure development aid to some of the poorest countries in the world when I returned to the States for maternity leave with my second child.
Also? The event was in a library and they were selling culled books and I got TEN OF THEM FOR ONE SINGULAR DOLLAR.
Truly an amazing day. #libraryjoy #library
Truly an amazing day. #libraryjoy #library
November 17, 2024 at 2:07 AM
Also? The event was in a library and they were selling culled books and I got TEN OF THEM FOR ONE SINGULAR DOLLAR.
Truly an amazing day. #libraryjoy #library
Truly an amazing day. #libraryjoy #library
And even though he only sold a handful of the origami he’s been folding for weeks, my son has declared the day a success. I’d have to agree.
November 17, 2024 at 2:02 AM
And even though he only sold a handful of the origami he’s been folding for weeks, my son has declared the day a success. I’d have to agree.
As the fair ended, the kids started running from table to table, bartering the leftover origami for others’ leftover goods. They made out like bandits.
November 17, 2024 at 2:00 AM
As the fair ended, the kids started running from table to table, bartering the leftover origami for others’ leftover goods. They made out like bandits.
These guys have got to be my favorite purchases of the day, an absolute steal at only 75¢.
November 17, 2024 at 1:59 AM
These guys have got to be my favorite purchases of the day, an absolute steal at only 75¢.
I had an absolute blast going on a shopping spree at all the other booths and hyping up all the tiny entrepreneurs.
November 17, 2024 at 1:57 AM
I had an absolute blast going on a shopping spree at all the other booths and hyping up all the tiny entrepreneurs.
There’s a lot of wretchedness going around at the moment, so here’s something lovely: my son and his best friend participated in a kids’ craft market today. It was every bit as cute as you’d imagine.
November 17, 2024 at 1:55 AM
There’s a lot of wretchedness going around at the moment, so here’s something lovely: my son and his best friend participated in a kids’ craft market today. It was every bit as cute as you’d imagine.
And if you’re lucky enough to know Joey in real life, maybe the sister to that one hangs in your own living room and reminds you that you’re loved every time you see it.
November 15, 2024 at 1:30 PM
And if you’re lucky enough to know Joey in real life, maybe the sister to that one hangs in your own living room and reminds you that you’re loved every time you see it.
I met Elena at the start of our advocacy journey when I was also just finding my voice to fight for my medically complex son. I hate that we’re still needing to do this, but there’s no one I’d rather be fighting alongside.
November 15, 2024 at 5:51 AM
I met Elena at the start of our advocacy journey when I was also just finding my voice to fight for my medically complex son. I hate that we’re still needing to do this, but there’s no one I’d rather be fighting alongside.
I want my first post here to be something beautiful, since I know the rest of it is just going to be me fighting for my kid and my patients’ access to healthcare and education. So here’s a sunset.
November 15, 2024 at 1:33 AM
I want my first post here to be something beautiful, since I know the rest of it is just going to be me fighting for my kid and my patients’ access to healthcare and education. So here’s a sunset.