Some Days Are Like That

By on

I had exactly 30 minutes to get into Kohls, over to the Customer Service desk to have a security tag removed from a bathing suit and back out to the van to make it to an appointment across town. Sounds easy enough.

Except, I had Josiah with me.

I almost didn’t go. Josiah doesn’t like getting out of the van, not even to come back into the house.  Why did I think he would be agreeable to racing through a department store? I have no idea.  It just seemed, in that moment, like a good plan.

I pulled up to the closest spot near the entrance, opened Josiah’s door and attempted to put his shoes on him. He pulled his feet away.  I grabbed his backpack.  He threw it down.  I tried to unbuckle his seat belt. He refused to budge.

Not exactly the scenario I had envisioned.

Read more…

Daily Travels

By on

Most every single day, Josiah and I take a ride.  It’s become such a ritualistic part of our morning that almost immediately after breakfast, Josiah walks to the back door and waits. He knows.

He knows we will get out of the house for a while.  We will either take a walk (not very often with this scorching Texas heat), go for a bike ride (I do all the pedaling and Josiah rides behind in the bike trailer, dangling beads and bouncing along the way) or go for a ride in the cool and comfortable air conditioned van. Usually, we go for a ride in the van.

Most often, there is no destination in mind when we ride.  We just strap in and go.  Sometimes we drive to the beach.  We ride along the seawall from one end to the other then turn around and come back home. Sometimes we drive up into town.  Many times we drive around the local neighborhoods .

Lately, I’ve started snapping pictures on our outings.  It adds a sense of purpose I suppose.  It’s become sort of an adventure to look for new or unusual sights along the way.

Read more…

Making Up Songs In My Head

By on

Josiah saw an Otolaryngologist yesterday at Texas Children’s Hospital. Yes, we used a wheel chair to get the boy in the door.  No, it did not go well.

His amazing caregiver came along for the fun.  The visit would have been impossible without her.  Though no medical professional touched Josiah the entire 2.5 hours we were there, he made that face he always makes when he’s stressed and ready to flee.  It’s usually one of the first indications Josiah is anxious.  He tightens his mouth and sticks his tongue out ever so slightly with an anguished expression on his face.  It means let’s go NOW!

It used to be we’d just see ‘the face’ as I affectionately call it when Josiah felt uneasy. Lately though, he has been pairing ‘the face’ with a swift blow to the side of his head. Depending upon his level of frustration, we sometimes hear a moan or two. Yesterday though Josiah was scooting his feet across the floor to propel the wheel chair out the door.  He was wapping himself in the head repeatedly; communicating quite clearly he was done with that place.

Read more…

Our Own Camp Blessing

By on

This summer many of Josiah’s friends are spending a week away at camp.  A week away from family and the comforts of home.  A week away at an incredibly amazing place called Camp Blessing.

Josiah isn’t signed up to go. I don’t think he is ready for Camp Blessing. Not just yet anyway. I don’t think Camp Blessing is ready for the likes of Josiah. They’d probably shut the place down if he signed up. A few days before we would get a notice camp has been canceled or suddenly closed due to unforeseen circumstances.

From what I hear, the staff and volunteers are amazing.  The kids have a blast. Everyone comes away with a positive experience. For the life of me, I can’t see how that would ring true for Josiah.  Maybe I’m underestimating my kid.  Maybe Josiah wouldn’t be the most challenged, overwhelmed, unwilling participant there, should we ever register him.  I don’t know.

But this year, we had our own Camp Blessing of sorts.

Read more…