Hindsight is really 20/20.

Hindsight is really 20/20.

For the past four months, I have been working on the second draft of the book I am writing about raising Nick.  I have such compassion for the young mother that I was.  I am astounded at the things that I have been able to do over the years.  I...

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...

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...

Don’t compare life experiences, share emotions instead.

Don’t compare life experiences, share emotions instead.

A friend of mine was recently diagnosed with breast cancer.  Another friend’s husband has just lost his job.  Arden and I have been helping Nick learn to deal with the side affects of increasing his seizure medicine to avoid seizure...

Keep on going, and going, and going.

Keep on going, and going, and going.

I was chatting this morning with a mom who’s 16-year-old daughter has the same syndrome as our Nick.  She said that just when she thinks that she can’t do anymore, then somehow she keeps on going, just like the Energizer Bunny. I have...

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...

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...

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