Support Josiah

"Look for the Helpers"

"It appears that this room is isolated from the rest of the home. Is there concern that Josiah will feel like he is being punished when taken to this room because he cannot sleep?"

I read the words on the page in disbelief. How could anyone who has read the amount of documentation and letters of support from Josiah's doctors and therapists come to this conclusion. And my second thought was how could I possibly still be surprised that this was the response I got back to our request for Home Modifications. I should be used to this by now.

The final determination about the Home Modifications request has not been made, but it doesn't look promising based on the initial responses we have gotten. This is the second petition I have submitted, and it represents hours and hours of work. But I really don't have a choice except to press on. Josiah needs the things we are requesting to keep him safe. To date, he has put his head through six windows. He has caused injury to his head an untold number of times from beating it against the floor or slamming it against our walls. 

I always feel the need to clarify when I share about our petition here on Josiah's fundraising website. We are fundraising for things that we could not get covered via Josiah's waiver. His waiver is supposed to cover things like shatterproof windows, padding on the floors and walls, and bathroom modifications or additions. Those are the things we are petitioning for. And they are things that we have very clear documentation to support.    

The bottom line is that the company who manages Josiah's waiver slot tries to save money at every turn. Careful funding approval is important, but sometimes the needs are so obvious. And I feel they forget to consider that there is a life behind the name on the paper. And there is a family supporting that life. 

I swallowed my anger and went to answering the multiple questions they had for me. And I thought of Mr. Roger's words, "Look for the helpers. You will always find people who are helping." I know he said this in reference to seeing scary news stories on TV, but the message is still the same when considering many hard situations we find ourselves in. Josiah has many helpers. He has a wonderful team of doctors, therapists, and teachers who advocate for him often. And he has all of the wonderful people who have supported him and our family through this fundraiser. 


We will keep advocating. We will keep trusting that God will bring about exactly what Josiah needs in His perfect timing. And we will remind ourselves often to "look for the helpers."

Because of His grace,
Christy

*Please continue to pray for Josiah. He is still struggling greatly. We have made the decision to move his schooling to a homebound status for the time being.