Dear Jakey,

I have been lost in thought over the last six days over you ~ over meds we had to give you specifically. Dr. Grottkau prescribed an anti-seizure medication for me because of my back. Long story about that but as you know we trust him. And MGH is full of smart, thoughtful, outside the box doctors. And that is what we believed in for you and what we chose for me. So against everything that I wanted I started the medication. You know I hated meds when you were on them and to be honest I have only gotten wackier about my hatred over medication. I barely take advil. I just don’t like it. But Dad is more rational and has strongly encouraged me to give it a month. I can’t promise that I will make it a month but I am trying.

And mostly it makes me want to say I am sorry to you. Sorry for making you feel the way all this crap probably made you feel. The first day I couldn’t wake up. My mind was awake but my body was so heavy I couldn’t move. The second day was more of the same. The third day I couldn’t stop crying. Poor Bridget picked me up to spin and I burst in tears like a crazy person. And I was cold. And my feet wouldn’t stop tingling. And sometimes my hands. And I just felt so god damn out of it. And at first I complained a lot. But then I stopped  – at least to Dad –  because I figured if you weren’t able to let us know how strange and weird it felt than I wouldn’t either. And now I am 6 days into it and it’s not so bad. I feel mostly like myself so I guess I adjusted but I still don’t like it. And to be honest, I know it is helping some with my back but I think I prefer the pain. I know you needed some of the meds you were on and I know they helped. But I also know some of your best days were when we got you off them. And in the end when we got you off clobazam and you were so much more expressive and active. It’s just hard for me to make sense of it.