A Rare Normal

Lessons learned, pain shared and magic found while living my rare disease version of normal.

A Rare Normal 4/2/20 A Rare Normal 4/2/20

Flying Solo

We are right at our 3 week point. Crazy how life changes in an instant. Knock on wood we’ve remained healthy so hopefully our efforts are paying off.

A Rare Normal 3/19/20 A Rare Normal 3/19/20

Our Shared Hope

Of course, the thought of being on lockdown for two months or longer is hard to truly digest. Many times this week I have been reminded of other times in our life in the last decade…

A Rare Normal 3/12/20 A Rare Normal 3/12/20

The World Is Crashing Down

I get asked a lot right now about how I am doing given the corona virus. Most people know me and my son live with chronic rare diseases - diseases that are complicated enough without adding a corona virus to the mix.