Just another day...another day and Jed is not here. Sometimes it's like the fog I am living in parts a bit and the full force of reality kicks me in the stomach. He really is not here. My son...my Jeddie..he died. What? No, this is just some weird dream. That sounds so cliche..it's like a dream..but it really is like that. I am having trouble putting the Jed that was making snow globes together with the Jed that stopped breathing forever while I was lying next to him. I look at pictures of him and I just don't see how it's possible. But..I look at my last picture with him and I just fall apart. It's really true. My Jeddie got so sick he was on oxygen and then he died..he really died. Oh my god. oh my god......
I have nothing else tonight
love
J & K

I stayed in bed today. I did stuff but from right here. I did take a shower...big event. I did my taxes and Savannah's. God knows what is right or wrong..but they are finished...well except for the local ones...I just cannot figure them out.
All day I felt ..well, I just felt like I couldn't cry and I was worried....I know I still miss him...even more than before. Why do I feel so calm? Maybe not calm..just flat. Of course that doesn't last long. The pain of not seeing my Jed or hearing his voice is horrible. It has been 30 days since he said "I love you mama". How am I still walking around and doing taxes and stuff...functioning in anyway? Surely when you hurt this much you can't just keep going. Half of me is no longer here. It makes me want to throw up thinking about the fact that he really is gone. I had someone say to me the other day "it's good to see you out and moving on" WHAT? WTF do people think? It is only getting worse not better...when people say stupid things I just stare at them. I don't want to be mean...but I don't even know what to say. I have only had a few of these but they are all dumb. Oh my favorite "well you should get back to work and get back on your feet" (Beck, I am not talking about you) anyway, I wanted to ask this person,"why is it I should be getting back to work and on my feet?" "Why do you want me to do this?" I think the more normal I seem and act the easier it is on others...at least the casual acquaintances. But, whatever. Maybe one day I will write a list of things NOT to say to a parent that has lost their child. I just have to remember there are many more nice people than there are dumb ones.
Danny made me chocolate chip cookies this evening. The roll ones, the ones that Jed and I used to eat all the dough and only have like 5 cookies to bake. We had a whole plate of baked ones this time.
I just want my kid. This is very uncool and getting worse everyday. Why do we have to do this? I don't want to. I want my kid.
Love J & K

october 10th Jed's party

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Originally uploaded by kbuckley69

I love this picture

This is a link to an article in our local paper about Savannah and the bone marrow registry drive.
http://www.ydr.com/ci_14296873

I have just about no voice now...not that some others would be sad. Savannah's bone marrow registry drive went VERY well today. They say 50 per registry drive is good....Savannah and her PSU York crew had over 80!!! Danny and I helped put stuff in envelopes. He stayed from a little before 11 until about 2:30. I stayed and came home with Savannah. She did a great job. Friends came from everywhere. I am very grateful.
I am also SOOO tired. I talked a lot today and it is hard to force the words out to talk loud enough for others to hear.
There was a big picture of Jed on the welcome table..he would have been so happy to see all those people today. I know he is very proud of Savannah.
Ok, that's all. I love you baby Jed.....missing you very much
Love J & K

Jed at age 5

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Originally uploaded by kbuckley69

this pic is Jed in the cockpit of our plane when we landed in Puerto Rico while headed to St. John for Uncle Adam & Tiersa's wedding. OMG could he be any cuter???

So after all that talking about work and how tired I am yada yada...looks like I have to go to work next week. The new contract takes effect soon, I thought if I didn't come back until after the new contract the only thing in jeopardy was my position in the wheel area and maybe my 1st shift spot...that didn't matter to me much. Now I found out it could possibly be my actual real job in jeopardy. That means I have to go have my Dr. release me on Monday and then I can go to work and start to play all the new games. I'm sure no one knows the actual rules so it should be fun. I guess there is the back to work physical, drug test..and who knows what else. I have to go to the HR office tomorrow to fill out some papers...have no clue what will happen...I am not allowed on the property without an escort......I'd laugh but I have a huge headache and a nice case of laryngitis. I have no idea what is going to happen in the next few weeks or how I am going to do this. I guess they figured , hey it's been almost 4 whole weeks since her son died...she should be over that by now. I am still kinda numb...maybe that's a good thing. Enough.... I suppose I should stop whining..and go to work like everyone else.
I went to breakfast with Dad this morning and Adam and Tiersa and Livi-Mac were there. That kid is a nut. Dad and I then went to see Gram B. It went well. She looks good. She said "well I guess I'll be next to go". I told her "you have been saying that since I was 15....I'm 40 and your still here looking good"!
Anyway, did that then came home and went to my psychologist to talk about myself..even more that I already do. My head hurts and am so tired..but not sleep tired. Sort of nauseous too..guess from the headache.
Tomorrow is Savannah's bone marrow registry drive at PSU York. So if you are not already in the register come on by and get a cheek swab.
Before when I went to work I knew when I came home the good part of my day started...raising my kids. Now when I come home there will be...nothing. Savannah has a life and is independent. She doesn't need to be driven to swimming lessons or any after school things. She doesn't need homework help or a ride to her friend's house. My head hurts too bad to think about this anymore. Besides I just cannot explain it anyway.
Anyway...everything is still ..well nothing is different lets say that. Maybe I'll go to work and just completely fall apart and get sent somewhere for "exhaustion" like celebrities! Yeah I know..not going to happen.
I love you baby Jed and miss you more than words. Nothing is right and everything is empty.
Love J & K

Jed and Savannah

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Originally uploaded by kbuckley69

I think he weighed too much for a horse-y ride

So today is Wednesday....I thought yesterday was Wednesday but nope that was Tuesday...didn't recognize it without a trip to a Dr office. So of course when I realized it was Wednesday I got to go over the events of four weeks ago today...for the second day in a row. The day I was given the news that would devastate many lives and change the lives of even more. I relive that hallway conversation over and over wondering if I missed something, maybe there was a decision I could have made differently. Maybe I was too hasty..maybe I quit too soon. Then I remember the pain Jed was in, I remember his eyes..and many many more things that I do not want to remember anymore. I need those things to fade. I can't go back and make different decisions even if I think I missed a good one. Too late..no going back...it's just too late.
Today was hard. I tried telling myself the things I repeat over and over. The things I have been writing about the last few days. The way Jed would want me to act and how I know he had to go..blah blah blah. It meant nothing today. Those beliefs just were not enough to eclipse the pain of missing Jed. Today was hard. My mind was stuck on all the things I will not have. All the things that are gone and how my future is so drastically altered. I feel like my future is floating away somewhere in the dark. It is very weird to look ahead and realize ALL the things you thought you would be doing are gone. The fundamental, basic, everyday things that come with raising a school age child....gone. Then there is the absence of Jed himself, his little smart mouth comments and his giggle and his smile and how he made everything so much better and brighter. Gone, gone and gone.
Ok, so my job is still there..whoohoo....I know I should be grateful....I'm not. Sorry, just truth here. I don't care. I know I have to pay the mortgage and all the crap that comes with life and I have a job when many others don't but many others have their sons and I don't so I just do not care about work and the drama happening there. I am so tired..which is weird and makes me feel bad & lazy. All I really do is hang out in bed. If I had had to go to work today I don't know how I would have even gotten up to get dressed much less gone in there. I guess I don't have to really worry about that until my leave is up in early March. Then not only do I have to go back to work I have to navigate the mind field of paperwork and requirements they have now. They have so many new policies but no one seems to actually agree on what they are. Maybe they will have it all figured out by March. But anyway what I was getting to was how do I work like this? I know I have to but I have no idea how I will. Guess I will find out. I better get myself together by March. HAHAHA, everything has gotten worse in the last four weeks and I do not see how they could do anything but the same through the next four weeks. I am supposed to keep living this? Oh my. Yesterday wasn't too bad,,,well compared to today. The days when I can get up and shower and put the laundry in, when I can do that does it mean that I miss Jed less, am I dealing better, feeling better? I think it might look that way to others but it doesn't feel that way. I am just more numb on those days...I can pretend better.. it only lasts for a little bit, it takes a lot of work.
I did leave the house this evening for about an hour. Danny and Savannah and I went to chipotle grill for burritos....they weigh as much as my head. Savannah and I brought half of ours home..Danny can eat them tomorrow. I was safe there because Jed was NOT a fan of Mexican food!
Tomorrow I am going to see my Grandmother. I am embarrassed to say that I have not seen her yet. I should have and I am sorry. She did not come to the service because it is very hard for her to get around. She has Parkinson's and has had a few strokes. She lives in an apartment at my Uncle's. SOOO, I am headed there tomorrow after breakfast with dad. I know, I know should have gone earlier. Poor Gram. In a perfect world she would have taught Jed to cook...but we know....nothing perfect about this world.
After reading this over....The depth of how self absorbed I am amazes me! I will work on that. Danny is feeling better...still sore but getting better and trying very hard to help me. Savannah is working hard, school, THON, work and the Bone Marrow Drive is Friday. She needs a blackberry or some kind of PDA to keep track of her schedule. I'll have to work on that....at some point.
So tomorrow I actually have to get up and get out of bed....oh god. I am exhausted just thinking about it.
Good night Baby Jed.
Love J & K

Jed and D

Originally uploaded by kbuckley69

Oh look at those sweet boys..what they gave each other will last forever

We made it through another day. I had lunch with dad again. We are all struggling and grieving in different ways. Everything I have read so far has said that everyone grieves in their own way..I can see that. We have to let each other grieve the way it feels right for us and for however long. There are no rules and no handbook. It would be easier if there was a specific way to do it that is proven to work the best. You know, a protocol..those I know how to follow. We don't have any wailers in our family though.(surprise) ..well at least any that do it where they can be heard. I wish I could do that....just scream and wail and cry & kick stuff...but I can't. Besides it might effect Jed and what he is doing. I don't want him to be sad or scared or worried about me. I keep reminding myself that he is not in pain and we had him for as long as we were meant to. He touched more people in 12 years than most of us will in our lifetimes. He continues to touch people and teach us lessons. We are very lucky to have him and I am the luckiest of all. The unbelievability of it sometimes hits me like a truck. I miss him..well that is about the biggest understatement ever. It's such a hard thing to put into perspective. I can't say I wish he was here..he was in way too much pain and it was getting so much worse. I can't say I wish he had beat it and made it all the way through treatment because I know all the post treatment problems that he could have suffered from. His eye site would have been poor or worse ...it's hard to talk about that knowing how horrible it would have been for the video game, tv kid. The extensive and very long treatment could have had an effect on his learning ability and we know how he hates to get something wrong. So every time I wish for a different outcome I realize that it just was not possible. Of course I would have loved for him to live a beautiful, cancer free life but then he would have been a different person and who would trade Jed for another? Definitely not me. I can't even wish to go back a few months and start over....going through that once was more than anyone should have to do. What I can do is wish, hope and help work toward a cure...or at the VERY least better treatment. The treatment is something I would not wish on the worst of the worst...(well.. I have but I wouldn't now). It is so barbaric. I remember having a conversation many times with different parents about the choices we are asked to make. We are told, "your child has cancer, if not treated they will die. This is the treatment, it could kill your kid". Once there is a relapse it is SO much worse. I get nauseous just thinking about it all.
Four weeks ago today I was told that the cancer was back again and I knew right at that moment we were finished battling this monster. I knew I had to let Jed go. I wanted to stand in that hallway, the hallway I had cried in, laughed in, eaten in, escaped to and run down many times, I wanted to scream. I still want to scream. I wanted to tell them..no, this is Jed we are talking about. You all know better than to think this happens to Jed. But here we are. And now we have to find a way to reconstruct our family and our lives around the huge hole left by Jed's absence. Most of the time I don't even want to. I wish one of my options was to stay in bed..forever. Unfortunately that is not an option. Savannah's future is bright and big..I want to see that. I also want Jed to be proud of me and I want to use the lessons he has taught us. But right now...getting out of bed takes all I have.
I love you Jeddie spaghetti.... and he says "I love you too mommy salami"..with a giggle.
Love J & K

I somehow screwed this pic up and had to repost it. now it is not in the order it was in before...like it matters

Savannah Dakota and Jed

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Originally uploaded by kbuckley69

I think this is fall or winter of 2002. Savannah is a bit taller than I am now and in college. Dakota is now taller than everyone and is 16, Jeddie is only about an inch and a half shorter than me and almost a teenager! Time flies

Last night we had dinner delivered by the lovely AP. The night before we had dinner from Maggie next door and tonight we had dinner delivered by dad..gumbo that mom made. I am going to weigh 400 lbs soon. Now we have left overs for a few days.
No lovely stories to tell today. No stories at all really. I spend all day thinking Jed is in his room. I am constantly waiting for him to yell out something. Last night we were watching the football game and he really likes Manning. I kept waiting to hear him yell or whoohoo. This evening when Savannah came in from work I waited for the heellloooo he always did. There are no random giggles and laughs coming from his room..he always did that while watching tv. As each day goes by the enormity of his absence becomes more clear. Did I word that right? I think that makes since. I can't put into words what it's like to not have Jed. The are really no words to describe how, well, just how much it sucks. NOTHING is not touched by Jed's absence. EVERYTHING is altered, EVERYTHING has to be reconfigured and NOTHING will ever be right. I wander around looking at all the things that I should be doing and not doing anything. It all just seems so hard and so exhausting and really kinda pointless. I look around and everyone that is close to me is struggling too. We all hurt but I also feel like I am apart from everyone. I am really very different now. I feel very different. I can't describe it...maybe at some point. But not now. All I know is that I am fundamentally different. The thought of going back to a "regular" life is overwhelming..way beyond anything that I want to do. Anyway, whatever, we will figure it out I guess. Meanwhile I am just going to pretend Jed is sleeping in the next room.
Love J & K
In all my self- involvement I forgot I wanted to say please send love and good vibes to our friend Thomas in Texas..hopefully good vibes will help him over some of these post-transplant hurdles. Also to a lovely friend from clinic who I heard is back in the fight.

Story for the day...The first book I've read since we came home from the hospital is We are Eternal by Robert Brown. I put it on my kindle..which I really like...just missing the enthusiasm Jed had for it, for me. Anyway, so the book was really good. It calmed me a little bit. I wanted to get it for my parents and then to pass around. Savannah and I went to Borders this afternoon to get it. We looked all over but couldn't even find the right section. So we used the computer to find the book in the store. The computer said it would have to be ordered. I was disappointed. We wandered around and Savannah found the right section, Metaphysical Studies. We looked at all the books on both sides of the big shelf. I was only looking for other authors or titles that were familiar. We were just standing there and I said "ok, oh well lets go". I looked down and right next to my hand on the shelf I'd looked on before was the Robert Brown book I came in hoping to get. The book that their computer said was not in stock...right there next to my hand. Only one copy. I said thanks Jed! Savannah said "ok, let's go"! So My mom got the book and I hope everyone that can will read it.
Alecia,,,my lovely friend and her mom Linda made us seafood lasagna, homemade bread and a homemade cheesecake and then delivered it!!! The 3 of us ate dinner together. Danny had to stand though...hurts to much to sit! The food was awesome. We talked about how Jed would have been excited about the concept and the scallops in it but would have taken 2 bites and said..oh it's very rich!
oh, I have another story...long one sorry. My friend that lost her son 2 yrs ago was telling me that he leaves her dimes and feathers to let her know he is still with her. She said "so keep your eyes out for dimes". That night I was standing in our room and I looked down and right between Danny's shoes was 1 lonely little dime! Needless to say I picked it right up. I told Dan about the dimes and I said I wonder what Jed would pick. My Grandfather is pennies, Jackson is dimes..I know Jed would want quarters but they are so big! I later went to his room and on his bed right where I always lay...was a quarter. :)
Today was a gray, cold yucky day but Savannah and Danny made me go out, Jed made sure I got the book and we had dinner delivered...with dessert. It made today tolerable and we made it through. Thanks.
When I went into Jed's room tonight to turn on his light..for the first time since we came home without him..his room smelled like him. Very faint and only briefly but it was there.
Love J & K
Oh, Jeddie the missing you is so very painful. The whole in our family is so huge. The love you gave and continue to give is holding us up.

Jed and Mr. Phillips

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Originally uploaded by kbuckley69

I think they would have been great friends.

Just thinking about how Jed used to sit with his legs crossed....exactly like my grandfather. Jed was named after him..but he never knew him. Jed is the only person, besides Granddad, that sat that way. Just a weird thing in my head.
I went out and ran errands with mom and Savannah. We stopped to see Gram for a bit too. We had to go get her "special hairspray". I drank the last cherry coke out of her fridge....she kept them there for Jed.
I took some flowers over to....how do I word it? I could say "to Jed" but Jed is not there, just his ashes. I guess it would be easiest to say "cemetery"....hate that word, sounds creepy so does "grave". SO anyway...I took some flowers over there today. It's only a little walk from the house. I still am having trouble comprehending that he is really gone. I just don't understand. Jed was to be the patient that kicked cancer's ass. He was already a rock star..in clinic and up on the 7th floor but he was supposed to be the proof that it can be done. I have this mental image of us coming into clinic for yearly blood work. He is tall, very tall, with thick blond wavy hair and still has his same bright beautiful smile but now with braces. He is strong and healthy, but still the same sweet boy. He jingles his keys in the hallway and his favorite nurse, Holly, stares at him and then realizes it is Jed and HE drove ME there! Everyone comes to see him and we are all so happy. I have had that vision for a long time..it was so vivid and evolving over the years that I was positive it had to be true. Little did I know...
I was thinking today, that our friend Forrest does not know. We saw Forrest in clinic about once a month. Big teenager that tried as hard as he could to be as"red-necky" as possible. His caring, sweetness always came out with Jed though. When we were waiting for the bone marrow test result on Nov 11th Forrest talked to Jed. Jed had started to cry because he knew what the results were going to be. In his funny, awkward, teenage boy, Forrest, kinda way he got Jed settled down. It was a very sweet moment that is burned in my mind. I should try to make sure he knows what that few minutes meant, to Jed and to me. Forrest and his mom are such nice people.
Today we got a letter from Jed's teacher's parents. It was a beautiful and extremely appreciated note. I was excited that he had this teacher this year. I thought Mr. Phillips would be the perfect teacher to get Jed ready for Jr. High. I also always like Jed to be around smart, nice men....the overly tough guys irritate me. I have to admit, the first time I met Ben, I thought he was about 17 years old and I was afraid he would not be as understanding or as patient as Jed would need. Turns out he was perfect. Now I know why, the letter I received from his parents shows me how he was raised. Jed has added so many wonderful people to my life..and he is continuing to do so.
It funny how I think I have nothing to say and it turns into a book!
So today was just a day...another hollow, heavy day...that's how I feel, hollow but heavy. Weird. I did go to the grocery store...with mom and Savannah so it wasn't too bad. It was very crowded though...I wanted to hide under my hood. But I didn't..onward I went...reluctantly...but for right now at least I went.
Love J & K

Had dinner out..the 3 of us. Nice and absolute torture. When I start to think of every little part of my life that will be different it is overwhelming.
We went to see Livi-Mac. Mom and Dad were there too. That kid is a nut. Again, extremely difficult to see her and know the love Jed had for her and how she will never know him.
My heart is breaking my heart is breaking my heart is breaking..over and over and over.
What my son went through during his life was horrible. I can only hope that the little good things helped to make it bearable for him. I can't wait to see him happy and healthy.
Dan is feeling a bit better, moving more but still very sore.
We watched the Haiti benefit on TV. All those babies. I don't want one but I wouldn't mind going there and helping to take care of them for a bit. One orphanage is run by 2 sisters from Pittsburgh...they were extremely young and they are there..taking care of these children..I can do that.... not stay forever just for a bit.....just need to figure out how. Not right now though. We all need each other here right now I think. But I hope to go.
I miss my Jeddie. I want the good & wonderful memories to soon over run the visions of the horrible things. The things he had to do, the fear he had and the pain. They are pretty big and there are many, it is very hard to bury them under the good stuff. It is a big job....that I think will take a long time. How exhausting.
Love J & K
That load of laundry is still in my dryer. I got dressed out of it today.

Jed the Hat man

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Originally uploaded by kbuckley69

such a funny little boy...all puffy from stupid meds but always SO funny!

I went to the gym with Savannah tonight. I lasted 10 mins going VERY slow on the elliptical...that's it. I can't explain how exhausted I am! Weird. I had lunch with Dad today. He then went to get his tattoo..all 3 grand kid's initials. It looks good. I did kinda ok almost all day...didn't get anything done though. Yesterday I washed a load of laundry, just 1....it's still in the dryer. I made coffee for Danny and I, once in the morning and once in the evening. I also swept the kitchen floor. So maybe that does count as doing something.
Danny is still very stiff and sore from his hernia operation. Yuck. I am glad he is home though.
Savannah is back in school and slowly going back to all the things she does. I am so glad.
I am too tired to do anything. I am working very hard on trying to hang on to the idea that Jed was a special gift given to us for a specific period of time to teach us specific lessons. He is no longer in pain. There is no fear and no possibility of losing his sight. No after effects of treatment. He is happy and healthy and busy doing Jed things. Watching us and hoping our sadness will ease. This is what I am working on. It is very hard work. I want my sweet guy back. I miss the sarcasm, the nutty Family guy quotes and the many many facts and trivia that he like to spout...somehow they were just always a tad off. Well not always, because god knows he was constantly helping me and correcting me! I miss his smiley little face and I miss the way he made our house lighter and brighter. I am going to try to make him proud and learn from all he taught me. Right now though....I am just so so sad and lost..
I am reading everything I can, trying to find something that helps...there has to be something somewhere right?
Savannah is getting her Jed tattoo in a couple of weeks. It's a tree with Jed's name under it. I have NO idea what I want but I have to have one. He sat with me while I got the one on my shoulder to celebrate the start of our cancer free life. Who knew
Love J & K
I wrote more thank you notes today...I haven't mailed any but I have been writing them. When you finally get one, well, just know there were many things I wanted to say to you but..I'm just not able, my brain is not working quite right If you don't get one from me at all...I am so sorry.

Jed and Bitty Baby

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Originally uploaded by kbuckley69

He was so excited to watch Livi-Mac's reaction when she saw her baby doll. He was also amazed at the little pants and shoes and bottle that came with her. It was so cute how interested he was!

I received an email back from Robert Brown..or rather the person that handles his schedule. I won't even be having a phone conversation with this guy unfortunately. His book was really good and made sense....but....a one hour phone call session is $500. I know compared to the famous TV ones he is cheaper and he has been doing this for 35 yrs...but ...geeze. His book talks a lot about how important it is for a medium to use his/her gifts to help others. I guess that's... help only the people that can pay that amount. Oh well. Whatever.
Danny is feeling ok. Still very stiff and sore, guess that will last for a bit.
We are still getting cards and notes. Thank you very much. We appreciate all the support and caring.
It feels like I haven't seen Jed in forever but is also feels like he was just smiling at me making snow globes. It sucks. Missing him is the worst pain I could ever have imagined. I know...that's all I talk about but...well...that's all there is to me now. When I came home today from my Dr. appt I ran upstairs to talk to Jed. A minute does not go by that I don't think of him. Everything I do..did..was with Jed. I am missing half of me. It is agonizing and then when I think it just can't be worse....it gets so much worse. I hate this. Things that should be fun or at least distracting are just painful or don't seem to matter. EVERYTHING feels pointless. You know, I have always been an optimistic person. I told someone recently that all my life just when things got to the point where I thought, oh god, what am I going to do, something happened to make the situation bearable and then I knew whatever the problem was things would be better soon. Even through Jed's illness I felt this way......then all of a sudden in October I realized that my help was not arriving. I still thought, ok I guess we have to fight a little more, then things will start to head up. Well it seems that whatever it was that turned up in my life to get me through the bad times forgot about me. Right until the very moment that Jed left I thought, any second now someone is coming in here with the right meds or Jed is going to wake up and then we all can laugh and cry and be amazed, once again, at Jed's resilience. Something HAD to happen....I really really thought that. I didn't expect it to be easy but I was positive someone was going to let me keep my son...and let him have a real life. I mean after more than 7yrs of fighting and working so hard shouldn't he get to win? So now there is no optimism, there is no sunshine around the corner now I know better. There is just life without Jed. I don't understand.
Love J & K

So another Tuesday....another Dr. office wait for me. Danny had his hernia surgery today. He did ok. He is snoring, in bed, in sweatpants (funny) with ice on his boo boo. I sat in the waiting room for a few hours and read a very interesting book. We are Eternal by Robert Brown. The book has some very good parts, things that make sense. I hope one day I work through my pain in missing Jed enough to get comfort from some of these ideas Mr. Brown has. He says that children who leave the "earth plain" are old souls. They are sent to specific people for specific reasons, to teach and learn specific lessons. When they are finished teaching and learning here, they leave their body behind. I have to agree with this. Jed taught so many so much. The Author also talks about how the light and lessons of these children are far reaching...a stone in a still pond. Jed is around us, helping and healing and guiding..according to Mr. Brown. I believe this also but...it does nothing really, to ease the loneliness, devastation and emptiness I am living with. It's so weird, I can sit here and read the book, and even apply the ideas to my life. I can do this almost like nothing is wrong until all of a sudden I get this kick in the chest and my stomach hits the floor. This happens as reality returns, I am forced to face the fact that I am not going to watch Family Guy with Jed, I am not going to see his funny smile as he pretends to be asleep while I am trying to wake him. I am not going to take him and DJ on a summer road trip...anywhere. I am not going to have days of anxiety as he goes off to Jr. High and starts a real teenage life. I will not teach him to drive, I will not help him decide on a college and I will not get to take him to clinic for a yearly blood test and have no one recognize him. I am so sad that I get none of that. My days of raising my child are over. All those things I was looking forward to will never happen. Those are some very hard things to have taken away. He was what I did and who I am. He really, really was my life. I do realize that everything I am writing is about me....me and I over and over. I am not the only one suffering. Everyone that knew Jed is also. Danny is really struggling. Trying to be strong for me while he has lost a very large part of himself. Savannah is missing Jed a lot. She is trying to focus that into her involvement with THON. My parents....Gracie and Jim.........the list really just goes on and on. I hate to admit this but.....it is difficult to see beyond my own pain and recognize other's right now. I am trying though.
This is a long post and I could go on and on.........poor you!
Love J & K

Baby Jed and Mommy almost 2!

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Originally uploaded by kbuckley69

My sweet little man

Oh, Mr Jim....see my mind is fried. I was thinking of friends under 13 or so! Now that you have brought the obvious to my attention ..duh..I get it. I am pretty dense sometimes! Ok, just one more thing that was spot on. Can I finally start to believe he is ok and not scared or alone? Maybe.
Danny and I rode for a bit today. I rode with him, my mind is not capable of riding a bike on my own yet..or ever. It was nice, as nice as it could be. I checked my phone a million times...no texts from Jed. I used to be happy to head back after a ride. Now it doesn't really matter.
Not much else happening.
Love J & K

Well, we are home from Lily Dale, NY. First off it is a very cool little village. I will definitely go back in the summer. As for the "reading" I wish I could just completely believe...but of course I cannot. She started out talking about my Grandfather. She got him pretty spot on and then she said he, my grandfather, was talking about my dad. The first thing she said it that there was a problem with his shoulder...a big problem. Well, he did get hit by a truck this summer on his motorcycle and he has been having back and shoulder issues. That was kinda weird. There were also a few things about my daughter and my dad...supposedly told to her by my grandfather. A lot of this sounded like fishing but some was so right it was weird. I had to finally ask her about Jed. She waited a moment and said "oh here he is". She told me that she asked him why he didn't come through right away and he told her that "he was new there and was trying to learn the ropes". Then it seemed to me that she was trying to say he died of a trauma, that he "left his body quickly". In someways it was very fast, I woke up and told him I loved him and he could go and he only took 2 breaths and was gone. On the other hand he was fighting for a few days. well actually 7 1/2 yrs. I don't know, it can be looked at in so many ways. She did repeat often that Jed was telling her "I'm fine" and he didn't say I'm ok he always said "I'm fine". The was what he was always telling me "Mom, I'm fine". I don't know. I just listened to the recordings of my session and my mom's..Savannah went in with her. Again, there were some things that were right on but she kept talking about my grandmother being "over there"...gram is definitely not "over there"..very much still "here"! She told my mom that Gram has been "toe dipping" for years. (back and forth between the 2 plains). I don't know about that. But, who knows. She also said Jed was talking about someone named "Billy". I don't know a billy. Then she said he is really talking about a friend with a J name. I thought at first it was Jackson..I asked if the friend was with him and she said no..that leaves out Jackson. She kept going with the J name. Saying something about sports and being very active..and that Jed has a very special bond with this friend and the friend was a big strong friend. Maybe DJ??? I would like to think so. AGAIN, I just don't know what to believe. I feel a bit calmer...not sure why. She assured me that my horrible horrible dreams are more about my stress and worry and sorrow and not Jed trying to tell me anything. According to her Jed says he cannot visit my dreams right now because they are so cluttered and cloudy. Oh and she did talk to me and also to Mom and Savannah about Jed and Danny's special bond. Kinda saying they were brought together to help each other..That I do believe...I have for years. So anyway. I am glad to be home. I am still just as heartbroken, full of despair and missing Jed as I was 2 days ago. I try to think of good things..there are so many.. but it always hurts too much. It hits me like a truck that I will not see any of these beautiful things happen again and then I start to think of all the bad parts and things he had to endure.
SO over all, I am glad I went....not the most jovial road trip we have ever been on but not too bad. We will go back this summer. I want to take Danny. This village is so cool and they do so many different programs throughout the summer. I will find a different medium and see what the next one has to say. According to the "rules" you should wait 6 months before you try to contact someone...well I couldn't. You also should wait 6 months between contacts...that sucks but I can wait until June.....maybe.... we shall see. I don't know if there are any "real" mediums around here. That's it, I will stop rambling. Thanks for all the love and support.
Love J & K

hey, so I am writing this from Jamestown, NY. It is much colder up here..duh. I am with Savannah and my mom. Why...well..tomorrow we are headed to Lily Dale here in NY. Lily Dale is a village of Mediums and Spiritualists. It was established in 1879. We are going there to meet with a medium/spiritualist. I HAVE to find someone that can assure me that Jed is ok. All my dreams are horrible and I have this sense that something is not right. I know, nothing is right but I am afraid of where Jed is. I need to know he is not lost or alone or in pain and most of all.... not scared. I am very worried that he is scared. I have no idea what will happen tomorrow. My appointment is at 10 and will be for 45 minutes. Mom's is after mine. If I leave here with no more sense of how Jed is then I will be back. There is an entire village of people here that are said to have the ability to see and speak to the spirit of people that are gone. I am sure to a group of you this sounds crazy..that I should just believe he is in heaven or whatever. I cannot "just believe". I cannot just stop taking care of him and just "believe" or hope he is somewhere better. So I guess to me the thought that you can just "believe" your loved one is ok is as hard for me to do as it is for you to believe someone can talk to Jed and assure me he is ok. Different strokes, hey it would be boring if we were all the same.
I am worried about Danny being home alone. He and Dad had dinner together tonight but they both went home to empty homes. Our house, even with the 3 of us in it, is very empty. Without Savannah and I there I am sure it is almost unbearable. We will be home tomorrow evening. I have this anxiousness to get home, I have had that feeling for so many years that I don't think it will ever go away. Over the last years, the few times I have been away from Jed, all I could think of was getting home and making sure that he was ok. Even in the middle of having a great time with Savannah (she is the only reason I ever went away from him for anything) my mind was always worrying and ready to get home. Now I have no reason to feel that way but I think I always will. .
I guess that is all for now. I'll let you all know if anything interesting happens tomorrow.
Love J & K

Fwd: Multimedia message

Jed hanging out with "The Girl Next Door"
this picture makes my heart hurt,,if it's possible to hurt more than it already does.
We ordered Jed's headstone today. How nauseatingly miserable

---------- Forwarded message ----------
From: <7173649416@mms.att.net>
Date: Fri, Jan 15, 2010 at 4:53 PM
Subject: Multimedia message
To: cancersuckskdsj@gmail.com


www.bigjedsworld.blogspot.com

Danny, Savannah, Kyle and I walked the 2 short blocks to where Jed's ashes are buried next to his great grandma [I was asked to remove what I wrote about Jed's Great Grandma..NOTHING I wrote was a LIE or an exaggeration. It was meant with Love. Not disrespect. The things I wrote about she and I talked about. . I do not ask anyone to read this... this is MINE I write here FOR ME..there are no lies and nothing is written as malicious. I am sorry for the people that were offended..not my intention. I should not have used her name without the permission of her family. Won't happen again. I did not mean to upset anyone.]
Dad had already been over there earlier today to clean up the flowers and such. Savannah and I took a new flower each and got rid of some more old flowers. We put a blue and white bow from a basket of flowers on the temporary marker. Tomorrow we go to order his stone marker. It is all fairly easy until you actually come out of the fog and the reality of the situation falls on you. Then it is again....just too much to bear. I know I have said this over and over and I'm sorry but I will say it much more....I do not know how I am supposed to just go on, go back to the daily grind of work, and trying to pay the bills. I know I will have no choice at some point but the thought of just starting up all that again seems so very pointless. Ok, so I know the point, mortgage, car, food, on and on. I love our house...but it is a house with a very heavy heart. A house that has lost it's most vital member. The house itself feels heavy and seems darker. Everything that has happened in and around this house since we moved in has been about Jed, for Jed...all Jed. He used to lift up his window and screen and stick his head out to talk to me while I was watering the flowers or while Danny was washing his bike. He would whistle at us to get our attention!. He would then amble downstairs and come outside just to see what was up. He did not like to miss a thing. He would tell me where he thought certain things should be planted and he would say "mom, our flowers look great, you do a great job". He would hang out on the antique crib I had on the porch and give everyone advice and direction on whatever they were doing, he should have charged for his "advice". He would also go out and sit on the front step and listen to his ipod until Haley next door came out, they would share the ear buds. I am so sorry that I only have 1 picture of this. I had to sneak to get it. I took it through the front door. Jed also loved Haley's little brother. He is only 2 I think. Jed would make sure he didn't go to far or eat too much dirt. He was such a "mother". So now am I supposed to do the porch and the flowers again this spring like we always did? Jed went with me every year, even when he didn't feel so great, to get all the flowers for out front. It took hours and trips to a few different places. Matching and blending the pinks of the flowers was essential. I don't think I can do that without him. I don't even want to. Just one of the many, many, many things that will change. I will never be the same person I was and our house will never be what it was. So again I come back to the original question, I am supposed to just go back to the daily grind? I really have not done that since Jan of 07. I always said I would never mind going back to work because that meant Jed was doing well. I never thought I would have to go back..because I had no reason to not work, because there was no one here to take care of. Going back because Jed was starting his own life as a teenager was hard but exciting....this, this is just....worse than I ever could have imagined.
Watching the complete devastation in Haiti, texted and donated my share....Danny did more. Seeing those mothers holding those babies made me sick to my stomach. Jed would have been in our bed watching all the news reports and making Danny dig out a credit card. He always found the place to donate that got you the most bang for your buck! You know like a "donate now and we will match it" kinda thing. I miss my kid.....more and more and more...every second. It just keeps getting worse.
Love J & K

So many things I would have done differently..if only I had known.....I just never imagined this was how it would end. 13 days since I have heard your voice

Savannah Renee, you have NO SHOES to fill. You are a complete and separate entity. My love for you is apart from my love and missing of Jed. You are the reason I am trying so hard. As for filling shoes, just clear yours out of the living room once in awhile!

So I did my Tuesday drive to a doctor's office and wait for hours thing. You know, my usual. They asked me if I wanted to come back to the recovery room when Danny was waking up from his colonosopy.....um..no..but thanks. A friend of mine told me last night that the recovery room in those places sounds like a fart symphony...not my words.. but after that description I decided to just wait until I had to drive around to pick him up. I am used to nutty kids of all ages in various stages of hair growth. This place was geriatric central. Fun Fun..Next Tuesday Danny has an outpatient hernia operation...whoohoo
I have been trying very hard to keep it all together. Today, from the moment I woke up I was having a hard time. Today was just HARD. Things seemed to have calmed down this eve when I came home and got in bed...at 5:30... and started talking to FB people. I don't care how lame that sounds. I have a network of friends on FB that have been and continue to be a big source of support. Many are Cancer kid moms and are in all stages of treatment and off treatment. Many are friends from "back in the day" and many are new friends. They have ALL been very supportive. I talked to my cousin in CA for sometime, my childhood friend in MD and my union steward! Yup a very eclectic group. Soooo, I am a bit better but only as long as I don't think. As soon as I think or as soon as reality leaks through the dams I have built my heart hurts. It is a physical pain. The kind that takes your breath away. When I imagine living the rest of my life with this I know I cannot do it. It is hard to describe how seeing a picture of Jed's beautiful, always smiling face makes me smile while a knife is stabbing me in the heart. I know, so very melodramatic but hey....it is. I NEED to see him and hear his voice and feel his hands. This is not a want, this is a very real and desperate need.
When I was trying to have another child after Savannah I remember having these worries, like boarder line panic attacks, about having a healthy child. For some reason I was almost positive that because I already had one healthy, perfect child I could not have two. When Jed was finally born and he was healthy and perfect I thought, "see Kristin, you are just nuts". It never occurred to me that he could get sick later. I thought I had really beaten what seemed like a certain outcome of having a sick baby. I am not sure what that has to do with anything but it was on my mind.
I heard the music from The Biggest Loser and had to turn the channel quickly. Jed and I watched just about every episode together. We were looking forward to the start of the new season. We liked to eat and watch the show...
Despair, that is a word I don't think I have ever used. It is the only word that comes close to how I feel. It to though, is terribly inadequate. When I go over in my mind the things I could maybe do or the places I maybe could go they sound good. Until I remember Jed will not be there with me, smiling, making smart comments and brightening all that comes close to him. Suddenly every option seems pointless and empty.
There are things happening here that are wonderful. I came home from my fun today to a clean house..thanks mom and even way better..... Savannah is dancing in THON...as a freshman it is a huge deal. We are very proud. I am proud and amazed at her strength. There are crazy big, incredible things in store for her. Savannah's future is wide open and exciting.
I guess I will sign off on that note...no use depressing everyone even more than I already have!
Love
J & K

A little boy I have been reading about for at least a year died last night. He and his family live in Australia. He was 5. Why? What is the point? I do not understand what is gained by these children suffering and fighting only to die anyway. What a freaking mess. I am tired, tired of cancer, chemo, pain and death.
I spent a few hours this evening at the house of some very close friends...family really. Trying to get their youngest child into rehab. What a mess. I love this family and am so sick for them. Tough love is incredibly hard but it really is the only thing to do at this point. Just another freaking mess. I left before they actually got on the road so I am not really sure what is going on.
Why can I only cry for about 30 seconds at a time? I feel like I could just cry and cry and cry but as soon as I actually start to cry..I stop. Weird. It does take a lot of energy, maybe that's the problem...not a lot of extra energy here!
Tomorrow I get to take Danny to have a colonoscopy....whoohoo. My life rocks...ok I guess to put a good spin on this I have to think at least it's not me having the colonoscopy!
It was very odd to be away from the house without Jed. It was even odder to know I didn't really have to go home at any certain time. I didn't have to call home to check and I didn't get any texts asking me to come home. I hated it. I want to come home and take care of Jed. I want to have to go into his room to lay with him so he will go to sleep. I want to have to go downstairs at 3am because he wants morphine and a cup of dried Frosted Flakes. I want I want I want.....but it doesn't matter at all what I want because I cannot have it.
I went to lunch today with mom, Savannah and Grace. After lunch we just ran some errands. It was good for awhile but all of a sudden all I wanted to do was go home and sleep. I checked my phone a million times but of course no one needs me at home and I have no real reason to hurry back.
I stop typing sometimes for 10 to 15 minutes at a time. I find myself just staring at nothing. It's hard to drag myself back from where ever my minds seems to go. I am not actually thinking of anything during these lapses..I am just staring at nothing. Weird.
I want my son back with me. I do NOT want to "find a new normal", I do NOT want to "move on". I do NOT even want to try to "draw strength from the good memories". I. just. want. my. son. I need to hear him talk to me, I need to see his little smiley face. I need to feel him when he climbs into our bed because it is "softer". Yesterday was 1 week since he was with me. I have never, in 12 years, gone this long without being with him. I cannot imagine EVER being happy again. I just do not see how that is possible.
You all are going to get tired of reading the doom and gloom but really....that's all there is in me. I guess I'll go now. Gotta be fresh to be the colonoscopy delivery driver...hey it's Tuesday and I am driving to a doctor. Weird.
Love J & K

I keep thinking that ok, now my son is officially gone. I have to change my thought process on that. He will always be with me, just as my brother said at the service. This morning the ...internment...went very well. Dad had 2 bagpipers there ( a tradition for all male members in our family). It was just family. A couple of people spoke and I tried. I said basically what I wrote yesterday. Jed was here to teach us lessons and we have to honor him by learning from the lessons he taught us. That is very much how I feel and it was easy to do this morning. My brother and Tiersa had everyone back to their house afterward. We ate and had a bushwacker...or 3. This evening though seems to be a different story. I woke up from a nap and wanted pizza but it turned into this HUGE issue, I wanted Dominos. Then the thought of ordering Dominos made me want to throw up. Jed was the reason for calling Dominos. He loved it when I ordered online and he could watch the progress of his pizza! So then we decided on another place, then I couldn't decide..oh it was a mess. Savannah ended up calling a different place, I ate it but it was not near as good as Dominos! Yes I know, I love the Wal-mart of pizza places! I have a pizza and coca cola addiction thanks to my son! It will take me awhile to fix that. Danny just got back from the store..he got me coke. It just seems that of a sudden I fell apart, I was just a mess, sobbing about pizza delivery..omg. If this is a shadow of what's to come...I am in trouble. I guess we will find out. One minute I believe I can control this and be in charge of how I deal with missing my baby but then.....the pizza delivery issue demolishes all my hard work! I remember the pain and agony of missing my best friend and how it is almost 20 yrs later and I still cannot mention her name without crying or feeling the horrible pain of her absence. This is my son, I am afraid of this pain..the agony is so incredible that I cannot imagine living through this. I know many people do but I just do not see how. Guess I will find out.... whether I want to or not.
I know I never really say anything about Jed's dad. I don't even know if he reads this and I do not want to know. He did not come to the internment today. He never called to say he was not coming...no communication..at all. Savannah called him at 5 to 10..no answer and no return call. I am not going to go into details of the saga that has played out since the kids and I moved out. There have been some not so pleasant times. I am not perfect and will take the blame for being the catalyst of all this and for not always handling the situations with grace and dignity but I will not take responsibility for his actions. It has been 10 years and things should have been different between him and the kids. There was some issue with a burial plot the other day, he was angry with his parents and confronted them on the phone. I called him and his explanation was that he wanted to make sure no one was pushing me into things I was not happy with. I assured him that EVERY decision was mine and mine alone. I know there was more to the burial plot thing then I could figure out but that was no reason to not come to the internment of your oldest son. Jed loved his dad. Jed loved his little brother and sister. He did not spend much time with them for a few reasons, one of which was Jed not feeling well. So anyway, really what all that was saying was that he did not come this morning. I know that the service yesterday had very little, if anything to do with them. I sort of feel bad about that...I don't know why, but I do. The reason for that though is the lack of involvement they had in Jed's life. I don't know if he is angry about the service yesterday or trying to make a point about the burial plot. I don't understand. There are so many things to say on this subject and so many layers but what I try I remember is that Jed would want no anger...on either side. I realized the other day that I really have no reason to ever see them again. I have always invited them to every party for Jed and made sure Jed and Savannah had birthday gifts for the kids and cards for Father's day. Savannah is 18 and her father doesn't speak to her much and Jed is no longer here. That WHOLE chapter of my life is over. I would gladly return to all that if it meant I could have Jed here, but it doesn't work that way so, that's that. Their father missed so much, he was the big loser in this whole thing and he doesn't even realize it. Jed was such a beautiful gift and he missed most of it, again...his loss.
I feel a little better now, the pizza issue has settled and I am calmer..with no medication, just writing.
I am very anxious as to how all this is going to play out, especially over the next few months. I know I should probably go back to work the first of February. I really do not want to. I can stay home until March 11th. I just have no clue what to do. I have things to talk about concerning our future, but I have no idea what the decisions will be. I just can't imagine staying here, doing the same old thing..forever. I will die..but my family is here and ...oh god who knows. A shop on the beach somewhere warm would be the stuff. Jed and I used to talk about having a shack on the beach with a big deck area to grill stuff and sell big yummy sandwiches. With a great bar and awesome drinks...right in the sand. The problem with that is not only money but who the hell is going to cook now?! I just cannot keep doing the same old thing I have been doing. Right now is not the best time to be making any decisions ...especially since I cannot even have pizza delivered without a meltdown. oh my ..this SOOOOO SUCKS
I have been having really bad dreams. Dreams about Jed being sick and I am frantic because I cannot help him but I am right there...or I am just not doing the right thing or enough of whatever he needs.
I wish I could do everything over again....I really really want to. Now I know..there are so many things I should have done better or differently. Shit. yes this really sucks...
I want dreams of my son that are comforting not reminding me of what I should have done. maybe soon...right?
Love J & K

The only thing that would have made today more perfect is if my Jeddie had been sitting next to me. Savannah did an amazing job. She planned and directed the entire service..it was incredible. I NEVER could have done what she did. I hardly cried at all because it was just so beautiful and wonderful to see all the pictures of Jed and to hear the music he liked and to watch Savannah "do her thing" . I am so thankful to all the people that came to the service and to the banquet hall. Seeing how love for Jed and Jed's love for others brought so many people together really held me up today. My family is so amazingly wonderful. My parents and all they have done through this to save me from having the stress. They have not only helped financially they have of course been there every step of the way. Dad, I know you are angry that you could not "fix" this. I couldn't either but fixing it was not what we are here for. We are here because we were needed to help Jed so he could help others.
As completely devastated as I am I really think Jed was here to teach us all lessons. Everyone that has been touched by Jed either first hand or through others has learned something. He made all of us better people. His sweet, compassionate , caring soul showed us how to be accepting and more loving. His giggle, quick wit and smart comments reminded us all to lighten up and not take everything so seriously. His strength, determination and sheer will showed us all that you can do more and go farther than you ever thought you could. Don't waste these gifts he has given. Take them and run with them. Make my Jeddie proud.
The rest of my family, extended family and friends that are like family have been what has held us up and gotten us through. I will never be able to tell you all how grateful we are.
I have much more to say so Big Jed's World will keep going. You might get a lot of whining and "poor me' kinda stuff but when I can, I plan on trying to make Jed proud..I am sure it will be quite some time but I plan to try.
Again Thanks to all ...the PSU students past and current, the high school students and Jed's elementary school friends, the teachers & staff, doctors, nurse practitioners and nurses, our social worker and HMC staff, Four Diamonds friends, neighbors, my friends from high school (it took me until I was 40 to realize I had so many great school friends), the people from work (so happy to see you all there, especially for Dan and Mom), to my friends that are like family..and of course my wonderful rockin' family..thanks for all the care, love and support for so many years.
Also a special thank you to all my fellow cancer kid moms, I feel your strength and love...my heart is with you in whatever stage of this crappy journey you happen to be in.
Okay starting to ramble, feels like it's 2am....it's only 8:15! Tomorrow will be the internment..can't bring myself to say burial. Jed will 2 blocks away from me, across the street from his school and in the place where we used to walk Emmitt everyday.
Love J & K
A HUGE thank you to ALL the owners and staff of The Great American Saloon and Jed's Lion's "Surprise".... I am blown away by how generous you all have been..Thank you

Come tomorrow and help us celebrate the wonderful sunshine and love that Jed brought to so many lives.
I miss you Jeddie, my world is dark and grey..and so very empty

Another article about Jed and a video that was shot in Sept 2008.
http://www.inyork.com/ci_14141079?IADID=Search-www.inyork.com-www.inyork.com
Love J & K

I just keep pretending he is asleep upstairs. Kinda works...not really. Tried to watch some videos I have of him...huge mistake. My chest actually hurts, I can't cry but the videos were like someone was just ripping out my heart. This is so unreal...it just cannot be true. Have you seen his pictures? How can that boy not be here anymore? Who is going to laugh at me, laugh with me, sing in the car with me, find stuff in my pocketbook for me... go EVERYWHERE with me...notice how it's all about me? Sorry, can't help it. Danny has been in bed all day today. I feel horrible but I really have nothing to offer right now. All his family and friends are in CA...he only has us and Jed was his best friend. Poor guy. One minute I am almost ok, the next I just sit and stare and have no desire to do anything, even take a drink, then all of a sudden I want throw things...but that takes more energy than I have.
My mom unwrapped all his Christmas gifts last night. If I had thought I would have found someone to take care of all of that..I feel bad. They really are doing more than they should be doing with all of this. I have no clue as to how to fix that.
I was given advice from someone in the know today..about work. The suggestion was I might want to be back at work by Feb 1st because our new contract takes effect on Feb 2nd. SOOO that adds to the fun. I know it would be stupid to quit my job..as I have no education or skills....which are essential for employment..or at least employment that can pay the mortgage but I really just want to go somewhere sunny and drink a lot..for a long time. Lottery?? Actually even the process of getting to somewhere sunny feels like too much. Besides I think I would feel guilty soaking up the sun. We all need to be soaking up the sun. Is life really just supposed to keep going like normal? The problem with that is now my "normal" is not possible. So I have to go find a new "normal"...I am supposed to have energy or desire to do that? good god.
I never, ever thought I would miss going to clinic and the hospital and giving out meds and worrying about fevers..but I do..and if I am doing that that means Jed is here...I want Jed here.
Hope to see you all Saturday. Also hope you all will join us at The Great American Saloon after the service.
Love J & K

Here is the link to the feature they put in the local paper today. Missing Jed more and more.
http://www.inyork.com/local/ci_14137440

Nothing to say really, except of course that I miss my son. More and More and More

Jedediah Thomas Smith
(September 29, 1997 - January 3, 2010)

RED LION- Jedediah Thomas Smith, 12, passed away on January 3, 2010 at Hershey Medical Center, Children’s Hospital after a long battle with leukemia.

A memorial service will be 1 p.m. on Saturday, January 9, 2010 at Living Word Community Church with the Reverend Dr. Charles W. Salisbury officiating. Following the service, the family invites everyone for a time of gathering at the Great American Saloon banquet room in Red Lion. Life Tributes by Olewiler & Heffner Funeral Chapel & Crematory, Inc., 35 Gotham Pl., Red Lion is in charge of arrangements.

Jed was born on September 29, 1997, the son of Kristin Buckley and Steven Smith.

Jed was an avid Penn State fan. He enjoyed playing video games, and watching The Simpsons and Family Guy, all with his best friend D.J. Dietz. He loved cooking and traveling. He would watch the Travel Channel and Food Network to see where he wanted to visit next. Jed loved motorcycles; he was the Grand Marshall of the 2008 Harley Davidson York Bike Night Parade. Most of all, Jed was a very gracious and compassionate child. At the children’s hospital, he was concerned about every child on his floor. He loved his doctors and nurses on the floor and in the out-patient clinic very much.

Jed is survived by his mother, Kristin Buckley and step-father Dan Slatton, his sister, Savannah Smith, his father, Steven Smith and his wife Alice, his brother Phinean and sister Nola; grandparents, Doyle and Linda Buckley and Mike and Holly Smith; great grandparents, Alyce Martin, Elma Buckley, and Ken and Hilda Goheen; an uncle, Adam Buckley, his wife, Tiersa, and cousin Olivia; an aunt, Mindy Zook, her husband, Barry, and cousin Dakota; best friend, D.J. Dietz; and good friends Grace & Jim McWilliams and family.

In lieu of flowers, memorial contributions may be made to the Penn State Dance Marathon at www.THON.org. On the web site, please designate your donation to Gamma Phi Beta or ACACIA, whichever accredited organization you prefer. If you would like to mail a donation please send it to; Gamma Phi Beta THON, 108s Haller Hall, University Park, PA 16802. Please put Jed Smith in the memo line of your check. All money raised goes to help fight childhood cancer.

So we worked on arrangements today. Really completely unreal. I also saw my Jeddie for the last time today. The thought that I will never see his happy shiny face again is more than I can bear. I stared at him for the longest time, waiting for him to do that thing where he tries not to smile when he is pretending to sleep...he just cannot NOT smile! I waited, waited for an eye wiggle, a little lip twitch...anything. But, there was nothing. Just his sweet face. Am I really expected to just keep going? Am I supposed to just go back to ..well exactly what am I supposed to "go back to? All I want to do is hang out with Jed. I want to do the stuff that Jed and I do. Will things always be this weird? Savannah and I got our hair cut today. When we were leaving Danny called to remind us to meet at the funeral home. I had to stop myself from asking who Jed was staying with while we all went to this meeting. Tonight Savannah was talking about where the family sits during the service, I said "just make sure Jed is on the aisle so I can get him out quickly if he doesn't feel well". Yeah, so anyway that is about where my head is. None of this is real. I have no desire to live in the "real" anymore. What is the point?
The service is Saturday at 1pm. When we have everything finalized I will post all info. Have I mentioned how WRONG this is? Just so , so wrong. Where is my son? Why is he not here, with me, hanging in his room, playing Wii in the living room, riding to the game store, headed to the Pride for his fried shrimp basket, getting ready to go back to school, why can he not be here? What was the point of making him suffer and fight so hard to just die anyway? There is no way you can give me an explanation that would make sense. I cannot think any further ahead than the service...after that everything looks gray, nothing but nothingness. I think about how truly devastating this is and how thoroughly I am crushed, I start to cry and then I realize that crying is a pathetically insufficient way to express how i feel. My despair and pain is so deep there is no way to physically express it correctly. I hurt for all the other people that are loving and missing Jed but honestly no matter how much I love these people and how much I worry about their suffering I feel empty and just uncaring. I want to be angry but Jed didn't do angry so that just falls flat, like I said I start to cry but it is so insufficient, I want to scream and wail but that takes more energy than I have. Mostly I just feel empty, dreary, pointless, lost and confused. Really how can he be gone,,,,honestly, have you seen his smile? have you heard him chatter for hours? have you heard his smart comments? Have you heard him express concern for another sick child? If you have experienced any of these things then you have to know, like I do, that there is no way he can be gone. It is just not possible and who ever decided it was ok for him to really be gone was a dumb ass or just plain mean. I want nothing, I just want my son back
on the other side of all of this I have to say that Savannah is amazing. I am floored by her abilities.
i need coffee..no really i just need my baby Jed
Love J & K

my last picture with the love of my life dec. 29th
I don't have a lot to say right now. I laid in bed with Jed last night for hours. I was so tired I fell asleep. All of a sudden I woke up and asked Danny for a blanket. While he was putting it over me I was talking to Jed, telling him to please go, I will be fine and he does not have to fight anymore. Jed took maybe 3 breaths and then stopped. It was so quick but he waited for me to wake up before he left me. The outpouring of love is overwhelming and so appreciated. The depth of our devastation in immeasurable. I don't understand how he can be gone from me. We were always together, ALWAYS. I asked his advice about everything and he helped keep me organized and together. I really don't know how I am expected to just keep going without him. THe fact that I was laughing with him and looking at his sweet face only days ago is so hard to comprehend.
The service will be Saturday, more info as we get it all set up. hope to see you there.
Love to you all and thanks also.
Love Jed and Kristin
can I keep signing it that way? i think I am going to anyway

My baby Jed left me at 6:30 am this morning. I will miss him forever

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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.

I just wanted to let everyone know that if you want to come see Jed please do. The only thing I ask is that you keep you visit short. Also if you have any cold symptoms please respect the other kids and do not come. Jed is resting, we are working on getting all of his pain meds at the correct doses.
Hershey Med Center 7th floor 7256. Amy..the ban on children under 18 has been lifted. if you bring D or not I completely understand.
Love J & k

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