Every year, when the Utah state legislature meets, I lose sleep. It has a lot to do with what might happen if the programs that pay for Jacob's medical care get cut or removed. Every year, it seems, they want to slash the budgets.
I know that it's tough. Everyone wants their particular slice of the pie, and the poor legislators have to look at the big picture and decide who gets what. I'm not being sarcastic when I say, "poor legislators", either. I mean, really, that's gotta be a tough job. Whatever you decide, someone will be mad at you.
But that's not really what I wanted to write about today.
I wanted to write about Jacob. Every year, we try and get him signed up so that he can testify before the Social Services Appropriations Committee. He's been doing it for several years, now. Last year, unfortunately, we didn't get him up to the Capitol in time, but this year, I did. He and I both testified.
He and I were second and third on the list, respectively. When it was his turn, he was firm, confident and spoke clearly. He talked about his illnesses, and conditions. He asked the legislators to think of him, when making the budget cuts, and ask, "How much am I worth? How much are my friends worth? How much is my family worth?" Then he flashed his Jakie smile and was done. The chairwoman of the committee thanked him very much for being there and sharing his point of view.
How many 13 year-olds can stand up in front of 20+ powerful adults and address them with calm and confidence?
Then I stood up and did my two minutes of grown-up blah-blah-bah. And then they were on to other adults. There were some great stories told, as some of them talked about how State programs had helped them get through school and find meaningful work and independence. There were disability professionals with statistics, charts, and graphs. I'm just very proud to have Jacob help them to see the very human side of the budget decisions.