Josiah’s new tent arrived yesterday. It sat in the box, unopened, until just a few minutes ago. I wasn’t sure I would open it. Once opened, it can’t be returned. After last night, the tent idea may not be such a good one. Here’s what happened.
I was exhausted from the adventures of the previous night with Josiah. I went to bed early. I wanted to unwind and read for a few minutes before going to sleep.
I guess the adventure with Josiah and the bathtub yesterday was just a precursor to the fun that was to come. How was I to know? How was he to know? How was anyone to know, really? I did say often times challenges come and most often they come on suddenly. I just figured we had already had enough fun for one day. I was wrong.
Last night was horrendous. For some unknown reason Josiah began to scream out at bed time. And I mean SCREAM. These weren’t, I want a drink, I’m trying to avoid going to bed screams. These were full throttle, I’m terrified of something screams.
Every so often life becomes challenging. Quite challenging actually. Often it happens in a moments notice. That’s when I count my blessings. That’s when I’m most grateful. Sounds strange doesn’t it? It’s probably a coping mechanism of some sort. But, for me, it works.
Tonight, Josiah needed a bath. I guess it had been too long in between bathroom breaks. His jeans had sprung a wet spot. Apparently, they began to absorb what his pull-up no longer could. As soon as I noticed, I whisked the boy into the bathroom. While he sat, I filled the large tub in our master bathroom with warm water. It takes quite a while for the tub to fill. So, Josiah sat for a while, waiting.
I’m in the process of creating a new room for Josiah. Right now his room is rather bare. He has a bed, a large bean bag chair and a dresser. The room has one accent wall, painted brown. The other 3 walls are beige. I really want to make Josiah’s room more exciting for him. Actually, I’d like to create more of a sensory room for him. The goal is to create a room that is inviting, yet calming.
Josiah is drawn to lights. He always has been. When he was an infant and needed to see an ophthalmologist on a regular basis, I asked about it. I wanted to know why my baby stared intently at lights. I wanted to know why he appeared to look right through me and not even notice I was there, but studied lights with rapt attention. The Dr. said some of his patients with Down Syndrome did that. He said he didn’t know why but some just spent a lot of time staring at lights.
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.