"There are not yet universal standards for genetic testing, but a narrow consensus has emerged...
Category: Caring for a Child
Many of us are providing care to a child. Some have disabilities that were apparent at birth, while others become apparent or develop in time. Some children have conditions or injuries they recover from, while others live with life-long health management and care needs. While adults with disabilities aren’t children, posts discussing caring for adult children and grandchildren can be found here.
Children With Complex Medical Needs Belong at Home
Children belong at home with their families. For children with complex medical needs, this is...
No Amount of Time With You Would Be Enough
I didn’t know about Cystic Fibrosis really until my daughter Margaret was born with it in 2019....
Meet Dr. Hurley – a physician (and now a patient) bent on righting the wrongs of insurance denials
Dr. Daniel Hurley, a top ear, nose, and throat (ENT) doctor in greater Phoenix, never saw himself...
Scientists Warn of A “Friendship Recession” — I’m Part of It
I’m thirsty for friends. It’s embarrassing. I’m far too old to be courting acquaintances like some...
To Get Help for Sick Kids, Mothers Wrote to Washington
Nearly a hundred years ago, mothers were already sending mail to Washington, DC, to advocate for...
How to Get Nurses Back in Homes Supporting Disabled Children
Finding nurses to care for medically fragile children at home has historically been difficult. But...
My Child Is in an Impossible Place, and I Am There With Her
In my family, we talk about hard things. That’s not to say we are morose. We are not. Nor are we...
The Brief, Wondrous Life of Little Leo
When Leo Babler was born with a rare and deadly genetic disorder, his parents reshaped their...
I wrote about high-priced drugs for years. Then my toddler needed one.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we...
Retriever of Souls
More than once I’ve been approached at the post office or market by people who say that Ruby has a...
The Island of Misfit Toys
This year, I have a Christmas baby. David was born in July, but he is the size of a newborn yet....
‘Nobody knows what’s wrong with me’ – life with an undiagnosed condition
Every year thousands of children are born with serious yet unexplained health issues. With no...
Space to Breathe
I am so good at clearing my son’s airway that I am like Sam-I-Am in Green Eggs and Ham. I can...
Sharing Duties as a Family Caregiver Is Like Losing a Security Blanket
"My husband is a remarkable caregiver. He knows how to talk to ER doctors and advocate for Ladybug...
When a child’s medical care becomes a parent’s pain
Parents of children with complex medical problems have higher rates of anxiety and depression. A...
I’m a parent of two children with a brain cancer diagnosis. We’re in the middle of a long and tiring journey
Statistics usually form the basis of awareness campaigns. Rates of incidence, survival and...
Sex and disability
Scarleteen has a fantastic collection of articles on sex and disability. While I typically only...
Jobs Aplenty, but a Shortage of Care Keeps Many Women From Benefiting
A dearth of child care and elder care choices is causing many women to reorganize their working...
Still Life
The doctor told Ann that John had severely damaged his spinal cord and was paralyzed from his neck...
Tethered to a ventilator for most of his life, how Ryan Lythall found his voice
His story? When Lythall was six-months-old, his mother, Irene, rushed him to CHEO where he had an...
I’m a working mom and my 4-year-old son’s full-time medical caregiver. Here’s what life is like
As a full-time working mom and a full-time medical caregiver to my 4-year-old son, I have many...
‘It is all about raising the profile of carers’
It was early evening, and Rebekah Zammett was about to leave her north Oxfordshire home to work a...
New York Let Residences for Kids With Serious Mental Health Problems Vanish. Desperate Families Call the Cops Instead.
Taylor searched desperately for help, signing Amari up for therapy and putting her on waitlists...