Write me: eva@evagremmert.com
Just another normal response.

Just another normal response.

We have all experienced it.  We are trying our best to handle a situation and then someone, who hasn’t any experience with what we are going through, decides what is best and tells us what we should do.  I have had various responses over...... Read More

Embrace The Unexpected Joyful Moments

Embrace The Unexpected Joyful Moments

Caregiving for a loved one with a rare and debilitating disease can stretch our capacities to the maximum.  Some days our responsibilities feel overwhelming.  Those days, when we are observing our life, all we can see is the storm clouds and the...... Read More

When does the Christmas Season start?

When does the Christmas Season start?

Nick has strong opinions on what he considers the correct timing of things.  Yesterday was Thanksgiving and today begins the Christmas season.  First thing this morning he began singing Christmas carols.  Sometimes during the year, I tease him a...... Read More

We all need support from others.

We all need support from others.

There were many things that I loved at the second day of the LGS Foundation Conference in Orlando.   There were thought provoking presentations on various topics including LGS research, new drug therapies, surgical options, devices, plus genetics...... Read More

Do you suffer from the Impostor Syndrome?

Do you suffer from the Impostor Syndrome?

This morning, I got notification that an article I had written had been published in the Rare Patient News.  The topic is traveling when you child has special needs.   I was excited to learn about it and was reminded of a skit by Steve Martin. ...... Read More

What is today’s lesson?

What is today’s lesson?

Some days are hectic and some are relaxing.  Each one carries a potential lesson for us.  It is up to us to ponder, meditate and discover the lesson.  Some of life’s lessons are hard, others are easy.  Some lessons are learned through one...... Read More

Events cause priorities to shift.

Events cause priorities to shift.

Just like most everyone I know, my calendar of scheduled appointments gets filled up.  Not all of these appointments are work related, some are lunches or dinners with friends.  Some of my appointments are self-care and pampering as well.  My...... Read More

Nick was Determined!

Nick was Determined!

Some days for Nick are better than others.  His capabilities and capacities seem to be variable.  When he is having a good day, we encourage him by letting him be as independent as possible in his self-care.  Sometimes if we are in a hurry or...... Read More

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