Unexpected kindness is a great service.

Unexpected kindness is a great service.

The kindness of strangers transformed my day today. I was feeling under the weather today because I couldn’t get my asthma under control.  We stayed in the condo most of the day.  We were scheduled to attend a luau this evening and I...

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...

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...

Celebrating new skills!

Celebrating new skills!

This past weekend, Nick had a bit of a cold.  I was so grateful that he had learned to blow his nose.   He was 13 then. Back in the summer of 1993, (that sounds like the beginning of a song!) we took an epic trip to Ireland with our extended...

When things go south.

When things go south.

We have all had those days.  They start out great, amazing in fact.  And then somewhere in the middle, a crisis rears its ugly head.  Sometimes we are caught completely unawares and other times we know “the particular event” is...

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...

Keeping the Bright Side Out!

Keeping the Bright Side Out!

If you ask my cousin in Ireland how he is doing, the reply often is “Keeping the bright side out.”  He explained this to me as when he is under pressure, he finds is easier to smile through the day, while working on keeping his...

Don’t underestimate the possibilities.

Don’t underestimate the possibilities.

Yesterday Arden and I witnessed another Nick miracle.  I took a picture.  Over the weekend I had been playing Bananagrams with friends.  It is a game where lettered tiles are used to spell words.  Nick was struggling to pick up the tiles.  We...

NORD, an amazing charity to support!

NORD, an amazing charity to support!

NORD, or the National Organization for Rare Disorders truly is a life-saving organization.  NORD, along with its more than 230 patient organization members, is committed to the identification, treatment, and cure of rare disorders through...

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