This was taken at Savannah's graduation dinner celebration....1 year ago. Amazing what can happen in a year...unreal.
Anyway I put up a pic of Jed and Mr. Jim so I wanted to be fair and put a picture of Jed with Grace! She has been his Nanny since he was 2. When I was forced to go to work G was there to step in and keep it all under control.
Not much going on here. Savannah and I went to the craft store & then I made myself go to the grocery store...with Savannah of course.
We watched the Children's Miracle Network Telethon. Danny had called me to say they did a segment on Eli. Savannah and I saw it when they repeated it. Then they were on LIVE!!!! I swear it was so great to see them! Dr. Ungar was with them....Savannah said that she will be able to identify his voice forever. I know I will. I see and hear snippets of the millions of conversations Dr Ungar, Jed and I had over the past 8 years. Some good...many not good. Right now, unfortunately, when I hear his voice I replay our conversation in the hallway on Dec. 30th. I see it in my head like I am floating above it all. Me, the Doc and Deanna. I remember waiting for them to say..."this is bad, but we can fix it"..or that there was a good med to try while at the same time I was thinking I cannot make Jed throw up again. He had been so nauseous for so long. I also remember thinking I wanted to sob and fall to the floor as my worst nightmares came true but I didn't want to upset the other parents on the wing. It was like a movie....but I had to live it and they were telling me Jed was going to die. I know on that wing it is not an uncommon occurrence....but only for others...not us...never Jed. I remember being told there were a few things we could try but I knew it was my job to save Jed from more hell. I knew what my decision had to be, I could not and would not torture him so I could spend a day or two more with him. My biggest fear was Jed would be scared. I had thought about this day many times....always telling myself I was being melodramatic and upsetting myself for no reason. Little did I know.... that I was preparing. My thoughts always went to the fact that I wanted him to just go to sleep. I did not want to see anymore fear on that sweet face. There were so many times when he looked to me for help and I had to tell him he must to do the scary stuff that hurt...I will never, ever get over that. Even thinking of all those times now, all the times he looked at me to save him from the hell and I didn't, I made him do all those scary, very painful things....it makes me nauseous. My stomach is actually cramping up writing this. All I wanted to do is save him....and I couldn't even do that. So because I had lived that moment in my head many times I knew what I had to say. I wanted pain meds and platelets...I wanted him to not know he was dying, no fear..just sleep and peace. I had to say..please stop all treatment. I had to actually make that decision, out loud and for real. It took what seemed like forever to get him sedated enough to not feel the pain...but we finally did. I wish now I had done so many other things..I wish I had said more, touched him more, picked him up and held him. I have so many "I wishes". They are pointless and I try not to dwell on them but they are there. Seeing Eli with Sue and Brett on TV, hearing his story and knowing he is ok right now makes me feel good. I watched a clip they did about Jan, the music therapy lady. They flashed through clips of a ton of kids.....a quick flash of Jackson was like a punch in the stomach....did you see that Trish? He was bald and sitting in his little bed, I think he was wearing a red T-shirt..I know it was him. Jan was playing the guitar for him. I saw many kids today that I have not seen in a long time....most still here....some are with Jed. I saw nurses, and childlife people and doctors..It was hard to not watch. Like a past life ...on TV. UGH...anyway I am so glad Eli is doing well. Jed thought he was the coolest kid ever.
Back to work tomorrow, school tomorrow night. I have been neglectful of my school work..so I am headed upstairs in a minute to study some notes I made on the movie I had to watch. Four classes left and 14 days of work left! Ten years and eight months of working at Harley Davidson is about to end. A bit scary but I am ready ...I think.
My Uncle called today, he invited Savannah and I to Colorado in early August to visit him and Carol for a few days. He also offered to rent us a car so we could drive around a bit. We are kicking around the idea to going to Taos...maybe Santa Fe. I remember loving Durango when I was there years ago....Savannah was 4. So we shall see. It sounds like a good time. Poor Danny, not only will I not be working I will be away too.
Ok, gotta go study. Sorry about all the morose stuff ..but hey...it is what it is...a saying I seem to use a lot these days.
Good night Baby Jed. Missing you oh so much. The last few days I really have been having trouble believing that this has actually happened. I am glad you are safe and healthy and happy. I cannot wait to see you again. Mommy loves you
Love J & K
PS Please check Savannah's blog (link is on the top right side of this page) all updates on the Memorial Luncheon will be on there. If this goes well we have big ambitions to start The Jedediah Thomas Smith Foundation....to raise money for the Four Diamonds Fund and also we would love to be able to give a small scholarship to a 4 Diamonds Child that gets admitted to Penn State...oh we have some grand ambitions.....but we have to see how this goes.