Sorry

Dear Jakey,

I may not read you this letter, or I may have to wait until your older. I would never want you to misunderstand it because if it ever made you feel as though I would love you more if things were different that would crush me. I couldn't ever love you more.

When you were 11 months old, we were in Chilren's Hopital Boston. We had been there for about 3 months or so at that point. No one really had any idea what was going on, you didn't really respond to any medication and depending on who read the EEG you were having up to 100 seizures a day. Those days were hard but you were pretty incredible throughout it all. Mommy and Ethan slept at the Holiday Inn in Brookline and Daddy slept at the hospital with you. I was so proud of your Daddy because he never left the hospital - he wouldn't - not without you. Anyways, every morning Mommy dropped off Ethan at Ya-ya's house and came over to spend the day with you. Later on in the day Daddy picked up Ethan and brought him over to the hospital. I can remember vividly how you would react to him in those days. You loved him so and you would follow his every movement and would smile at him. He would often get right into bed with you and lie with you, knowing at 2 years old how careful he had to be with all the wires attached to you back then. Anyways, at some point we made the decision to try something pretty intense to make the seizures stop. It was something I had vehemently opposed doing for the couple months before but I changed my mind and for that I am sorry. I should have stuck to my guns because after that pentobarb coma you haven't really smiled again and you haven't really followed with your eyes again. Something happened when they did that to you and I am sorry. I can't blame anyone else but me and I just wish I said no. Dr. Liebson and Dr. Bourgeois made it sound like we had nothing left to lose, I know now that we did. So I am sorry. It is the only thing in my whole life that I wish I could change. Not because I would love you more because I couldn't possibly but because I miss your smile.

Love,
Mommy