I know I’m doing the wrong thing right now, but i’m writing while upset.
I’m not sure how to respond to some pretty frequent questions.
“How is Liam doing?” I’m asked this multiple times a day.
The light hearted Betsy will reply “Great! He just joined the 600 Book club in the read at home program at school, he loves his new kite, and he wrote the most adorable little note to his friend”. 
The heavy hearted Betsy is thinking “today was just a little bit worse than the day before, and the day before that, and the day before that”.
“Any recent news on his condition?” People ask with caring hearts, and loving voices.
“Nope. No news. Just keeping all our ducks in a row, trying to keep him walking for as long as possible so that if a drug does come along, it can do some good.” I think all this as I smile and change the subject quickly as to keep from crying.
“Liam looks like he’s doing really well, does he really need the wheelchair?” (Yes, I’ve been asked this multiple times).
{Deep breath in, smile, deep breath out} “I’m glad to hear he was having a good day when you saw him. We hope for the good days, and plan for the bad days. We also have to be really careful that we don’t over work his muscles, even when he thinks he can do something, as it speeds up the degeneration of those precious muscles.
I’m really not sure how to respond to these questions, so if I look like a deer in head lights it is because I’m thinking of what I want to put out into the world, the sadness or hope?
Please keep asking questions, keep checking in. We all say things that may not come out right, but please keep talking. I would rather have someone say something “wrong” than if they were to stop talking about Liam, about MD, and about our new normal.