Unique

By Sandy on May 23, 2012

It’s been said Josiah is an enigma. The dictionary describes it this way: One that is puzzling, ambiguous, inexplicable and mysterious. Interesting way to describe a child. Early on, when Josiah didn’t fit the mold of a ‘typical’ child with Down Syndrome, we just knew beyond a shadow of a doubt something more was going on with him. We mentioned it countless times to specialists and therapists and physicians. Everyone disagreed.

They said, if Josiah had Autism he wouldn’t be so affectionate. If he had Autism he wouldn’t let others get so close to him. If he had Autism he wouldn’t give eye contact at all. We were told things like every child with Down Syndrome is different. He’s just very low functioning. Why would you WANT your child to have a diagnosis of Autism anyway?

Curious

By Sandy on May 21, 2012

Sometimes people stare. Mostly, it’s young children who stare at Josiah. Occasionally an older child or an adult will stare. I imagine, if I wasn’t Josiah’s mom, I might stare as well.

Josiah, of course, is oblivious to people watching him. He’s wrapped up in whatever he happens to be doing and is totally unaware. It doesn’t really bother me, I just wish I knew what people were thinking. I wish I understood what it is that makes them so curious. Why exactly are they staring?

My Joy

By Sandy on May 14, 2012

In the end, there really was no need for concern. Josiah’s back to his happy, bouncy, sleepless self. I swear it started the very night I wrote about him sleeping so much. He’s back to staying up til the wee hours of the morning, and with such an abundance of energy I only wish I could tap into it as well.

I’m grateful for the few days when he slept well. It was a much deserved respite for both Rick and I. Josiah was probably just refueling his engines so he could go again for another few months, full speed ahead. My guess is he recharged with rocket fuel.

Looking for Joy

By Sandy on March 12, 2012

My favorite author, Andy Andrews says we are all either in a crisis, coming out of a crisis or heading into a crisis.

Think about it. Think about your own life or the lives of all the people closest to you. It’s true isn’t it? Knowing it doesn’t change it. But knowledge is power. Knowing your life will be in an almost perpetual state of crisis gives you some options. Deal with it. Complain about it. Ignore it. Enjoy it.

I’m sure you can think of other options. These are the first to come to mind.

Hold On

By Sandy on February 26, 2012

In less then 12 hours I’ve read blog posts, email and Facebook messages from 3 different parents of children with disabilities. Each expressed some sort of frustration. Each expressed anguish. Each tugged at my heart strings. This road we travel is not an easy one. It is often met with unanswered questions. It requires strength, determination and courage, even when we feel depleted. It demands the most when we have the least to give.

Giving up isn’t an option. Our children need us. We are their advocates. We must stay strong for them. Last week, I heard a song on the radio. I had never heard it before. Instantly, it touched me. It’s called ‘Hold On’ by 33 miles. When I need encouragement, I play it repeatedly. May it be a blessing to you.