Some days just suck

Alex had pinkeye on Sunday, the day he was going to be driven up for a visit. This marks the first time since June of 2010 (the month I moved up to live near him) that more than a week passed between visits. It was a pretty bad day. Rarely have I felt worse about my decision to put Alex in a group home than this week.

Later in the day we got a call letting us know that he was having really bad behaviors (hurting himself a lot) and they wanted to try Ativan to “break the cycle”. We agreed, and he calmed down, but I hate Ativan. It’s not that it’s no good, and it’s not even particularly dangerous when it’s used just once every week or two, but it seems so terribly unnecessary if we could just throw a big dose of hash when he got like that.

I got a message on the About page from a mom in a similar situation (same underlying condition, even: TSC), and it just tears me apart. These children are having their lives ruined by ailments we don’t fully understand, and then matters are made worse because even when we’ve run out of options, we’re still not allowed to turn to cannabis. It’s absolutely absurd. It’s tragic, it’s disgusting. And I feel like it’s completely out of our control, which just makes it that much worse.

Things will suck less next week.

4 thoughts on “Some days just suck”

  1. there are many of us in Oregon that would be willing to gift you the needed medicine. in accordance with our laws it has to be freely given to you and will be if you read your emails…

    1. Thanks for your offer, I’ve emailed you to discuss it.

      The main issue with oil of any kind is getting Alex to keep it all in and measuring out the precise dosing. We could give it another shot, but as long as he’s not allowed to be dosed by the group home, I don’t see oil making much difference.

  2. Genesis, thank you for your response to my brother. I don’t know if he needs any medicine or not, but I appreciate the response.

    Brody, I am so sorry I haven’t been on the Internet much lately and I haven’t been following. Just this morning Quinn pointed at a picture of Alex on the fridge and said his name. It made me so happy that he remembers Alex, but sad that we don’t get to see you much. I love you and I miss you and I think about Alex (and Ben and Claire) every day.


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