Fine Dining

By Sandy on October 10, 2015

Can you guess what that is? Josiah’s food, while at the hospital is often challenging to identify. It is chopped in such tiny pieces, I have difficulty figuring it out.

The speech therapist there suggested Josiah has oral dysphagia. Dysphagia means trouble with eating or swallowing. I’m no expert, but this boy has rarely had trouble with eating. He eats just about everything and anything we put in front of him. He eats massive quantities of food at every sitting. He appears to be swallowing it all just fine.

Got Advice?

By Sandy on October 9, 2015

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.

Josiah Was Here

By Sandy on October 8, 2015

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…

84 Miles Each and Every Day

By Sandy on October 7, 2015

Miles and miles and miles I go, not too fast, but not too slow. To see my boy so far away, each and every single day. And on that drive I sing a song to make the trip seem not so long. Sometimes I dance there in my seat, I wave my hands, I tap my feet.

When other cars go whizzing by, I stop my dance, at least I try. What would they think to see my show? Quite frankly I don’t need to know. And so I pause to look the part; a focused driver, alert and smart. Today I think, what else is there, to pass the time from home to here?

Learn something new? A book on tape? Flex some muscles? Get in shape? Text a friend? Say a prayer? Daydream about a hammock chair? Plan a meal? Plan a cake? Use cruise control for goodness sake. Call my sister? Call my mother? Call my daughter? Call my brother?

Think about the things to do, when I get home at half past 2? Listen to a speaker speak? Drink some Spark if I feel weak? Wipe the dashboard with a tissue? Dwell upon a family issue? Charge my phone? Scratch my head? Contemplate a book I’ve read?

Pass the cars in the fastest lane? Honk my horn? Be a pain? Take a short cut? Stop to shop? Hail a Taxi? Race a cop? Praise God for great Houston weather? Stop this nonsense altogether?

An hour there, an hour back, maybe I should grab a snack? Now don’t you laugh, this much is true. I’ve thought it over through and through. So many options for which to strive. The best one yet? I should just DRIVE.

Messing with Utopia

By Sandy on October 6, 2015

Today was my scheduled surgery day. In April I had a total knee replacement of my left knee. This morning I had planned to have my right knee replaced. Obviously, that didn’t happen. When Josiah was admitted to the hospital for a long term stay, it just made sense to postpone it. There is no way I would be able to visit him every day while recovering. There is no way I’d be able to mess with his ‘perfect’ little world while he’s in the hospital, if I were laid up in bed, popping Vicodin.

Messing with his perfect little world is exactly what I’ve been doing lately. Every day I drive nearly an hour to see my boy. Every day I bring something different with me; more clothes, a new balloon, some additional snacks. Today I brought a very detailed schedule.