Columns

September 10, 2020September 3, 2020

Give Up Hope? Wrong Prescription, Doc

A Rare Mind - a Column by Terry Jo Bichell, Columns

Hope is a treatment that works for any disease. Why don’t doctors understand that? When my son, Lou, was diagnosed with Angelman syndrome 20 years ago (wow, that was ... Read more

August 21, 2020August 18, 2020

Summer Challenges and Zoom Adventures

Columns, Raising an Angel - a column by Mary Kay

As of this writing, 140 days remain until 2021 — but who’s counting? Within two weeks, my husband had two ER visits, one resulting in a hospital stay. A ... Read more

July 24, 2020July 21, 2020

Negotiating With a Manipulator

Columns, Raising an Angel - a column by Mary Kay

It was 5:30 a.m. and Jess needed to use the bathroom. Instead of returning to her room, she exited stage right. The sun was rising and that was all ... Read more

July 16, 2020July 13, 2020

Lou Needs a Unique Identifying Number, Too

A Rare Mind - a Column by Terry Jo Bichell, Columns

We already have social security numbers, dates of birth, addresses, license plates, heights, weights, and ICD-10 codes. Isn’t that enough? No. It just plain isn’t enough for people with ... Read more

June 25, 2020June 23, 2020

Lou’s Leg Has Been Broken for Over a Year

A Rare Mind - a Column by Terry Jo Bichell, Columns

My son Lou’s leg has been broken for 18 months. It must hurt like crazy. If I had a broken leg even for a day, I would surely be ... Read more

June 19, 2020June 17, 2020

This Is What Keeps an Angel Mom Up at Night

Columns, Raising an Angel - a column by Mary Kay

Three things keep me up at night: worrying that my daughter’s seizures will return, thunderstorms, and a waning gibbous moon. This past month, we hit the trifecta and experienced ... Read more

May 22, 2020May 21, 2020

This Year Has Gone to the Dogs

Columns, Raising an Angel - a column by Mary Kay

Since 2020 has gone to hell in a handbasket, it’s necessary to step away from the 24/7 news cycle. I don’t want to focus on the virus. Instead, I ... Read more

May 14, 2020May 13, 2020

The Quarantine Quarterhour: A Gig, a Hot Meal, and a Nonverbal Co-host

A Rare Mind - a Column by Terry Jo Bichell, Columns

This is not a story about COVID-19. It is about Angelman syndrome and a daily jazz show, but the coronavirus does make an appearance. If it weren’t for Angelman ... Read more

April 17, 2020April 17, 2020

Should Dave Open the Refrigerator? RAREwithCOVID Can Help Decide

A Rare Mind - a Column by Terry Jo Bichell, Columns

We have a problem: My husband, Dave, is a surgeon. Normally, we are proud that his long hours go toward an undeniably good cause: to save the lives of ... Read more

April 17, 2020April 15, 2020

Keeping Your Angel Busy

Columns, Raising an Angel - a column by Mary Kay

Captain’s Log, Stardate 04.14.2020: This is our 34th day of self-quarantine. To survive, we’ve had to adapt to new restrictions and find distractions to prevent ourselves from losing our ... Read more