Sep 08, 2013 Love and lemonade
Sep 08, 2013
What a crappy day. I can sense that things are falling apart, and that just makes me feel so sad. How is it possible for something that is already so fragile, and already clearly not going well, to fall apart?
The thing that I noticed today is that Sam has started to repeat words and phrases several times. Sometimes he’s talking, saying the same thing over and over, but he’s not talking to me-not trying to communicate. This repetitive, whispered speech gives me a cold feeling just in the center of my body. You know that feeling you get when you get bad news, but before you really react? It’s like that. Sam’s giving me bad news. I don’t like it.
If I just report to you what he did today, you’ll think, “That’s awesome, ” or “What a great day.” We look so good on paper.
We did have a lovely walk at Oso Flaco (yeah, that’s Skinny Bear) Lake and boardwalk. At the turn-around (1.5 miles) Sam requested to get out of his chair and walk. Now that’s a great thing because 1-Shows he has drive still, and 2-His butt has about a two mile limit in the wheelchair so a 3 mile walk means 1 mile of discomfort for him. He walked a long way. We were joined by our sometimes-neighbors, Jessica and Scott, who are kind, warm, and genuine (and Jessica’s an awesome cook. She almost always has a meal to share.). Wish they lived here full time.We went to Starbuck’s afterwards, and Sam enjoyed the cake pops more than the hot cocoa, so much so that he ate Abby’s too. He laughed at something funny Jessica said. He’s still here.
Maybe he was just pooped out by our outing and tomorrow will be better. That’s what John says. Interesting that whenever I am down he seems to be up, and vice versa. I don’t know how we’ll manage if we both happen to be down at the same time.
As a result of my post about the trash hound, Chance, two friends tried to buy us a new trash can. People are so ready to jump in and help. We already ordered a trash can with a locking lid so we’re covered there. Any money you were thinking of spending on trash cans, please donate to help fund research. Here’s another way to help: Our friends are organizing an Alex’s Lemonade Stand fundraiser. This is not a fundraiser for the Jeffers, but for that something much bigger-research for a cure.