For more years than I can remember, Josiah has sucked on his hands.  It started when he very young and has progressively gotten worse. What was once a minor annoyance has now become a major frustration.  Those hands touch everything before being shoved in his mouth. Then they touch his face and his hair.  Sometimes he looks like he’s just gotten out of the shower, his hair is so wet.

When he reaches out to grab your hand, or push you away, it’s almost always with soggy fingers. We’ve tried redirecting him and distracting him.  We’ve tried offering other things for Josiah to chew on. A few days after he was hospitalized I bought him 2 dog toys and a baby teething necklace, all of which he promptly shoved in the drawer.

Read more…

These happen to be the mini blinds at the hospital, but the ones from home look very similar. What is it with destroying things? Why does Josiah leave a path of destruction in his wake?

Over the years he has trashed more things than I can count; TV’s, end tables, lamps, plates, cups, chairs, toys, books, Willow Tree angels, computers, iPads, toys, clothes, you name it.  I’m sure I’m forgetting some things.  Quite honestly, it doesn’t even phase me anymore.  It’s almost expected, as if it’s absolutely certain it will happen, it’s just a matter of time.  Read more…

The last couple of days Josiah has seemed so much more like himself. He allows us to get close and pulls us in for hugs. He smiles sometimes. He even giggled a few times yesterday.  All of these are great indicators he may be closer to being discharged.

The primary goals are for him to be eating well, sleeping through the night and showing little to no signs of aggression before he can come home. He’s eating really well. We’ve been told he’s sleeping well, but just learned he’s recently starting his happy day at 2:30 or 3 am. Not good. There are still some signs of aggression but comparatively speaking they are mild. Read more…

In 1987, the year Rick and I got married, well before we had any children, Emily Perl Kingsley wrote ‘Welcome to Holland’. It’s a sweet essay from a parent’s perspective of what it’s like to discover you will be parenting a special needs child, when all along you had been anticipating a ‘normal’ child.

I read it 15 years later, when Josiah was first born.  Having a child with a disability she says, is like going on a greatly anticipated vacation, but ending up in a different country than you had expected. You planned for Italy and could hardly wait for the splendor and wonder of Italy. You boarded the plane with great expectations and enthusiasm, only to find the pilot screwed up somehow (my words, not hers) and you ended up in Holland. Rather than mourn the loss of Italy, Emily suggests you embrace Holland for Holland has much to offer you hadn’t ever considered.

Read more…

This alone is worth the 2 hour round trip drive to see Josiah every day. This fills my heart with so much joy.  This gives me hope our boy will be back home someday soon.

However, this is Josiah, thinking if he allows a quick embrace, I will leave.  Immediately afterwards, he always pushes me away, as if to say, ‘There, I am done with you, now go.” Baby steps!  This is a work in progress. I’ll be patient.

Today, I’m just going to leave many, many times.