When my son Charlie was born, the primary thing I noticed were his eyes. They were technicolor blue like the kid from A Christmas Story and surrounded by a fringe of the longest lashes I had ever seen. I was so sucked into their orbit that I forgot to blink. When I did, I registered… Continue reading The Body is a Memory

This Feb. 6-10, 2023, we’re celebrating the thirteenth annual Feeding Tube Awareness Week® with the Feeding Tube Awareness Foundation. Feeding Tube Awareness Week was created to increase awareness and educate the public on the lifesaving benefits of enteral nutrition. A feeding tube is a medical intervention that provides essential nutrition and hydration. More than 200… Continue reading Happy Feeding Tube Awareness Week!

Advocacy Doesn’t Have to Mean 100% Inclusion I want my son Charlie to be with his peers. I want him to roll his wheelchair out onto the playground for recess and sit in the cafeteria during lunch and participate in the Fun Run (where his aide wheeled him in whirligig circles on the track until… Continue reading Is Inclusion Always the Right Choice?

For my fortieth birthday, I rode the Ferris wheel at the Santa Monica Pier. The sun setting over the ocean cast a pink glow across beachgoers strolling along the sand. Holiday music echoed from the speakers along the boardwalk below. And next to me, my spouse leaned too far over the edge of our plastic… Continue reading At Forty I Learned to Leave

I’m Not Raising a Wilting Flower This pandemic has challenged every single one of us as humans. Children, teens, adolescents, adults: we all have had to balance an extra set of life demands that have been outside of the scope of any other life experience we have had thus far. I often pose the question… Continue reading How to Raise Resilient Children

Hippotherapy, aka horseback riding therapy, has been my son Charlie’s favorite pastime for the last six years. He is ten. To remember him on his first horse is to remember a different season of life. Dumpling was like a sweet old man in a pony’s body. He moved in slow, gentle stops and starts that… Continue reading Less Work, More Play: It’s Time To Change the Way We View Therapy

Nothing Wrong With A Little Hope Nine years ago this January, my spouse and I drove by a two-story house with a deck on the back and two giant maple trees out front and knew this would be our future home. I mean, we didn’t know know, but there was a “For Sale” sign in… Continue reading Everyone’s a Fortune Teller When It Comes to New Year’s Resolutions

When Quitting is Winning When I was fifteen, I told my mother I wanted to “go into” fencing. I was ready to make a career out of it with the giant onesie and chest pads and face guard and epee (a term I knew only from crossword puzzles). Why had I decided this? Looking back,… Continue reading How to Know when to Quit

Charlie, who is ten, has cerebral palsy and uses a wheelchair to move and a speaking device to communicate. We are on the cusp of something to navigate...

Want a More Productive Conversation with Your Child’s Caregivers? Build a Sandwich I discovered the “sandwich method” long before I had kids. As a high school English teacher, parent conferences could go one of two ways: beneficial or brutal. Humans are sensitive creatures and parents of teenagers are the most sensitive of all – there… Continue reading The Sandwich Method