Hi, I'm not really sure what I am going to write but i don't want anyone to be too worried. So I feel I must update. I think we have finally gotten the pain and sedation drips to the right dosage. It still has to be increased over the course of the day but he is much calmer. We had some great visitors yesterday. My Aunt Paula and Uncle Rick came from the DC area. Jed's teachers, Mrs Washko and Mr Phillips with his wife. Another teacher of Jed's Mrs Poff and her husband. Some great Penn State girls (sorry my brain has no names) and in the evening The Dietzs came. Dave, Amy and big D. DJ was so very brave to come see Jed. I know Jed heard his voice and was happy he came. It was a wonderful thing for DJ to do. I know adults that cannot come to see Jed but DJ, at 12, handled it beautifully. Min, Barry and Dakota came to see us. Jed actually reacted to hearing Dakotas voice.
Today we were fairly busy with visitors. Peg and Daryl, Grace, John and Meg. Casey, Trish and Pete with kiddies, current and former Penn state friends. I know I forgot..oh wait, Adam, TIersa and Livi Mac came! She sat on my lap and patted Jed's hand and said "baby"! I guess because he was in bed he looked like a baby! I'm sure I forgot someone, I am having trouble remembering what day it is and who came when! Sorry if i forgot you, you are no less important than anyone else...my brain is just fried.
I am ok , except for those times when I forget to pretend that he will be ok. Right now I am very good at just pretending. Mom and Savannah came up this morning and Danny went home. Danny and Hop came back this evening and mommo and Hop went home. That seems to be the schedule we are keeping and I think it's working. Savannah and mom are here for visitor organization! They shuffle people in and out! and bring me water and rice crispi treats. I spend all day in the chair next to Jed's bed holding his hand. I am so afraid if someone is not touching him at all time he might think he is here alone. Whenever I get up I have someone take the hand and the chair. There really is nothing to add. I am still not able to comprehend that this will actually happen. All my life when something bad was happening, just when it got to the point that I couldn't handle it something would happen and make it all right. I really thought that would happen this time...I guess not. ( I still have a secret hope).
I had to briefly talk about arrangements today. Danny and Dad are handling all the practical stuff and Savannah is doing the other stuff. I almost got physically sick when talking to Danny about what happens after. I want it all to be right, as awesome as Jed is awesome. Of course I know there are limits! I am just giving my opinions and my few must haves they are doing the rest. It is a horrible nasty rotten thing to even talk about. The impact this will have on so many people is impossible to measure. I know my family will never be the same, holidays will never be the same, NOTHING will ever be the same. It will never be as good as it was when Jed was with us.
I better go before I start to ramble.
Baby Jed,
you are the most wonderful boy in the world. The world will be a much darker place without you.