I’m thirsty for friends. It’s embarrassing. I’m far too old to be courting acquaintances like some...
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.
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...
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...
Sabrina’s Parents Love Her. But the Meltdowns Are Too Much.
Sabrina, who was given a diagnosis of autism coupled with a rare genetic disorder, has exhibited...
A Disability Day of Mourning: Remembering the Murdered and the Vulnerable
On March 1 every year, disability communities gather to mourn disabled people murdered by their...
A hospital offered a payment plan for baby’s NICU stay — $45,843 a month for a year
Under the 2010 health law, nonprofit hospitals are required to provide financial assistance to...
The Art of Disability Parenting
Robert has cerebral palsy, and he has weathered multiple complications in his seven years. I don’t...
Some young adults with disabilities are stuck in long-term care. They say that’s discrimination.
For the past decade, [Victoria] Levack has lived, reluctantly, at the Arborstone Enhanced Care...
Friend to healthcare worker
I am currently helping friends with their severely disabled child. The child needs round-the-clock...