Columns

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

March 20, 2020March 19, 2020

Cooking Helps My Daughter Develop Daily Living Skills

Columns, Raising an Angel - a column by Mary Kay

I learned to cook by my mother’s knee. We baked cookies and kneaded dough. She even would give me cake batter for my turquoise Easy-Bake Oven. Sometimes, Mom would ... Read more

February 21, 2020February 20, 2020

My Angel Is Becoming More Independent

Columns, Raising an Angel - a column by Mary Kay

For the longest time, my daughter’s motto was, “I may not know where I’m going, but I want to get there fast.” Jessie wore overalls as a kid, which gave ... Read more

February 13, 2020February 12, 2020

Researching New Therapies: Can We Learn to Set Broken ‘Brain Bones’?

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

When my son was diagnosed with Angelman syndrome 20 years ago, I believed that we would find a cure. Lou had severe developmental delays and epilepsy. In 2000, the ... Read more

January 9, 2020January 7, 2020

My Son Is Not Your Guinea Pig

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

Everybody wants my son’s cerebrospinal fluid. My 20-year-old son, Lou, has Angelman syndrome from a deletion of genes on his maternal 15th chromosome. The lack of those genes makes ... Read more

November 15, 2019November 18, 2019

With Our Daughter at Camp, We Rediscovered the Joy of Date Night

Columns, Raising an Angel - a column by Mary Kay

For many kids, September typically means it’s time to go back to school. But for my daughter, Jessie, it was a continuation. Jessie was fortunate to have a year-round ... Read more

October 18, 2019October 15, 2019

Angels Need to Learn Proper Manners, Too

Columns, Raising an Angel - a column by Mary Kay

If my daughter, Jessie, doesn’t like what she hears, she will walk away. When her boyfriend — more of a buddy than a romantic interest — gets frustrated, he ... Read more

September 20, 2019September 17, 2019

Angels Change Over Time

Columns, Raising an Angel - a column by Mary Kay

I was on sabbatical this summer and didn’t write for BioNews Services or my blog. Sometimes you don’t realize how burned out you are until you stop. But the ... Read more