Write me: eva@evagremmert.com
Save the best for last.

Save the best for last.

Nick was about seven when he finally gained the skills to feed himself.  It was a long road, but he finally got there.  He spent many years, three meals a day, eating food that was pureed in a blender.  It was the only consistency he could manage...... Read More

Merry Christmas.

Merry Christmas.

When Nick was little, the doctors warned us many times that he would probably get to a point where he’d reach a plateau in development and quit learning new things.  That hasn’t happened. I want to tell you about our Christmas Miracle...... 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

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

Singing all the verses of the National Anthem.

Singing all the verses of the National Anthem.

Do you know all 4 verses of our US national anthem?  Nick does.  Did you know that there were 4 verses?  I think that most people in the US don’t. You can look it up online.  I find the messages of each verse to be inspiring.  Contrary to...... 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

Life is full of opposites.

Life is full of opposites.

Yesterday as I was working on my draft rewrite of the book I am writing about being Nick’s mom, I noticed something incredible.  Our lives are full of experiences that create opposing emotions. For example, Nick was almost four when Derek...... Read More

My child has seizures and a wheelchair, can we travel?

My child has seizures and a wheelchair, can we travel?

This blog I wrote is in response to queries I have received.  The answer is YES you can travel.   However some pre-planning and organization can help make the trip more relaxing.  Planning Your Trip: Familiarize yourself with where you are...... Read More

You done being frustrated with me?

You done being frustrated with me?

Most of the time, Nick is very sweet and compliant.  However, he is human and there are times his behavior is not correct and I get frustrated at him.  Even angry. As soon as he notices that I am upset, he immediately apologizes.  “I sorry...... Read More

Mom, I ok!

Mom, I ok!

If you ask Nick, today is the best day of the year.  It is even better than Christmas or Easter, or anything.  It is his birthday.  Born in 1979, he is 38 today.  Each year, he is so excited as he anticipates the arrival of the 19th of August...... Read More

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