1st day of school 2006...He had been off treatment for a year!! Look how squeezable he is!



So today would have been Jed's first day of Jr High. He was really excited about it, especially after DJ moved to a different elementary and then they redistricted the schools. His words about Jr High, "I can't wait, we will all be together again". Oh Jeddie. I was just as excited as you. I couldn't wait to drive you and DJ all around to whatever things Jr. High boys do. I would be happy to go to the grocery store to make sure I could feed teenage boys. Instead the house is quiet and I despise the grocery store more than ever. Not quite what we had planned. I guess the universe has it's own plan.

First day 2007....He had been back in treatment for seven months.....



Danny is now safely in California. He landed and went to visit a friend in San Leandro. He is now at a hotel and will drive to his mother's, above Napa Valley, in the morning. I know he will have a good time and he needs to see his family.

First Day 2008, Look how much he has grown!!!



I am trying to read my business law and environmental science. Business law is VERY boring! Environmental science is at least a bit more interesting. I am using my Uncle Vance shamelessly. Printed a bunch of stuff from his Foundation's website. He is President of the Wild Foundation. I asked my Prof if he had heard if it and he said no, but was very interested. So into class tomorrow morning I will go with all my printed stuff to kiss a bit of professor butt. Last year I helped Jed do a report on the Mayan Empire. Of course he thought it was really kinda morbidly cool that they sacrificed people. We had lots of good pictures depicting that aspect. He was very proud of that, his first report....me too!

First Day 2009...the coolest kid EVER...



Jed, this is not where I thought we would be today. This is not what I thought I would be doing....who EVER could have imagined? I'm glad this variation of events was not something that would have ever crossed our minds. As absolutely miserable as I am for myself, when I think of the things you could possibly be dealing with.....as a mom....I cannot wish you anywhere but where you are now. You are not sick, you are not scared and you are not sad. I know you have won....it just SUCKS SO BAD that I am stuck here. I wish someone could tell me exactly how long I have. If I knew that I think I could deal a lot better. I guess that is not something we get to know before hand. Anyway, so while I am stuck here doing whatever the hell it is I am supposed to be doing I will do the best I can to keep it all together. You always did, so I guess I can try too. Missing you my friend, missing you so very much
Mommy Loves You
Love J & K

Hop and Jed Chillin' at The Ranch



The Ranch....everybody's home at some point :)

Danny leaves to tomorrow morning. I have to have him at the airport by 5am. Thank god he is flying out of Harrisburg and not Baltimore...the drive is much shorter and MUCH easier...oh, better not jinx myself. Dad has very kindly volunteered to pick him up the following Tuesday. He doesn't come in until midnight and I start my very long Wednesdays the next morning! He says he doesn't really want to go but I know it's just the stress of getting everything together. He is planning to see his mom, sister, son and grand kids. The girls spend a lot of time at his son's mother's house, Susan, so he was talking about all meeting there I think. He keeps saying he wishes I was coming along but I am glad I'm not. They need to have a chance to have him to themselves. I am not the best company these days anyway.
I only had one quiz today....yay.
I guess that's it for now. Nothing new or really exciting.
Good night baby Jed. I did not water your rose bushes today. I will do it tomorrow. I am reading a book about a woman that lost her mother. Right before her mother passed on the daughter said " make sure you give me signs that you are right here with me". This led to one whole chapter on butterflies :) I haven't had a quarter in awhile dude... I'm just saying. Jed...it sucks trying day after day to pretend that I want to be here. Of course I want to be here with Savannah, but I never, ever thought I would have you two in such VERY different places before you were both grown up. I figured that was something I would have to figure out later....not already. This just sucks. My business law prof. asked one girl why she was smiling. The girl answered "I'm just happy to be alive". I laughed...and not in a happy way....not hiding the crazy too much today. I need the funny, very sharp insights you always have on things. Just missing you so, so, so much.
Mommy Loves you
Love J & K
I forgot to say Happy 3rd Birthday to neighbor dude Zaiden.....Jed thought he was pretty cool. So, Happy Birthday Z !

Last year at this time....I took the boys to The Inner Harbor.



2 Quizzes tomorrow. I am sitting here just staring...guess that means I have nothing to say really. You all know the deal. No point in going over it again and again.....well, at least not tonight anyway.

Jeddie Love, I feel like I am waiting....not sure what for. I think part of me is hoping you'll just come home....or I will wake up. I am missing you desperately. Your sweet little face and huge smile. Those big feet and long thin fingers. It's not easier or better...it is worse. The missing is so huge. The hole I have to learn to live around is enormous. I am extremely grateful that you choose me to be your mom. Having you, right next to me, for twelve years was the greatest gift anyone could ever have. So I have to hold on to that and the fact that someday I will be with you again. One more day down....is one day closer.
Mommy loves you
Love J & K

What a face....



Missing my Jed. I can't tell you how much I am missing him. Every second. It is constant. It still does not seem real. I mean, how can this be true? Jed was SO big, he filled up so much space with his "Jedness"....how can he be gone? I hate this.... ok, enough

On a much better note, Savannah's friend Jaz has been getting 4 hour passes to go to the apartment. It is an apartment that transplant kids transition to before they can actually come home. Today she had a pass and invited Savannah up to have dinner with them. It is such a relief to hear she is doing better. Keep it up girl.

Our Thomas friend from Texas has started high school!! How awesome is that?



Jed Chillin' at the Acacia house 2008. I just always had this picture in my head of Jed at 18, tall, blonde, strong and healthy....hanging out with his Acacia brothers.....and me at home worrying about what kind of trouble he could get in. ~~~big sigh~~~ Well I know he is healthy now and I'm sure he is at the Acacia house fairly often. Just not how I had envisioned.

I saw Gram B today. She looks good and she knew me right away...and mom too. She is pretty funny. According to her, her best friend was by to have a visit....the woman died 10 yrs ago. :) I think she really did visit...but that's just me.
My visit to George Anderson is getting closer....I am excited. Trying not to be but I am.
Goodnight Jeddie. Missing you ...oh so very much. Penn State football starts soon. I will yell for you....but it will not be near as great as when you do it. The house is quiet and will seem even more so when the games are on. Nothing is the same, nothing is right. We are just trying to do the best we can while living with the absence of you.
Mommy loves you....forever
Love J & K

Jed and Autumn....she is the older woman....by one week :)

Savannah and I went kayaking today! Yes we did. It was fun. Our super neighbor, Maggie, took us to her mother's place. She owns Susquehanna Outfitters on City Island in Harrisburg. We went with Maggie, her 2 kids and her mom. We started on a little creek and ended up in the middle of the Susquehanna River. It was a really nice day....thanks guys!
Missing you Jed. I got you message loud and clear this morning. When I was thinking of you and just feeling miserable...that song came on the radio. Move Along....."Even when your hope is gone, move along, move along just to make it through, move along". From one of you favorite groups...All American Rejects. I am missing you desperately but I try to keep moving along. I am not happy about it but I keep trying. Mommy Loves you Baby Jed
Love J & K

Funny Funny Boy



I miss you Jeddie. I need to dust your room but I know when I go in there my day is finished....so no dusting for now. I just miss you...beyond words
Mommy loves you
love J & K

THON 5K 2009

We Want The Lion!!!


My brain is tired.
The kid sitting next to me in Business Law was wearing a bracelet with a little tiny sponge bob charm on it! I just looked at it and smiled.
A fellow cancer kid mom, Marianne, told me that when she was visiting the cemetery with her sister-in-law she was saying that she had asked her daughter, Anika, to please send a butterfly to land on her arm. Just as she finished telling her sister-in-law this, a butterfly flew right over and landed on her arm!! Anika has been gone 1 year now. I remember following her story and sobbing in the dark, at the hospital while Jed was sleeping. Her oldest is away at college and her husband works. She and Ani were like Jed and I.....always together. Our kids are incredible and they are both looking after their moms. The friends I have made through all of this are more gifts from Jed. They just keep coming :)
I am tired. Heading to bed to read. NOT school stuff though.
Danny leaves on Tuesday for California to see his family. He will be gone a week. Two days after he comes home Savannah and I are going to Long Island for a night to see ...George Anderson...I am excited. I have read every book he has out.
Ok that's it.

Jeddie babe, I am going over to trim and clean things up tomorrow. It's looking a bit jungle like over there. I also have to go to the grocery store tomorrow....you will be there right? Jed, the absence of you in my life is unbearable. Missing you Jed....really really missing you. I just keep telling myself every day down...means I am a day closer to you.
Mommy loves you...always
Love J & K

The famous Jed eye roll....



The last person to get that awesome eye roll was Jed's "nacho cheese Jen", one of his fave nurses. She told him one of her bad jokes. He wasn't really talking much then, I think it was either Thursday evening or Friday afternoon but he woke up enough to listen to her joke and give her a HUGE eye roll. Oh my god I miss my kid.

No one can eye roll like him. :)

I spent the day trying to read the few chapters I had to read and take notes. It really took me ALL day. Just so ya'll know....Business Law SUCKS....good god, hurry up and get me to family law please. Micheal Avon...how do you do it? I read 2 chapters and could barely stay awake....it was 9am! Uncle Vance and Kate and Russell...my family members that are involved in environmental stuff....after 2 chapters of environmental science....I have had enough of that too. I had no idea that there was a real difference between conservation and preservation. John Muir was a preservationist and Gifford Pinchot was a conservationist...hhmmm. then as the lovely, super smart Kate Lincoln informed me, Pinchot was the father of forestry ...can't wait to throw that fact out there in class when the time arises.... :) Having smart family members is very helpful. Anyway, so I am really out of my league after reading just a couple of these chapters. Unbelievably the only thing I really am sure of is my business software class.....well it has only been 1 class. I'm sure by tomorrow's class I will be in over my head there too.
While I'm sitting here missing Jed and worrying about school a commercial just came on with butterflies all over this field, I looked up at the clock and it was 8:55...Jeddie and his double numbers. I know he does it to let me know he is constantly with me. It helps to keep me from falling apart.
Jed, I miss you. I still spend my day pretending that you are in your room sleeping and watching tv. It is really the only way I can keep going. I hate not having you here. I hate that I am expected to just keep going without you and I hate not knowing how long I have to wait until I get to be with you. UGH...but onward I go....because I know that is what you would want me to do.
Mommy Loves you baby Jed.
Love J & k

1st day of 6th grade. August 2009. The backpack he is wearing is the one I am using for school now. It says "JED" on it.
So I lived through my first day. A girl next to me said she was so nervous she thought her heart would explode....I said "oh that sounds lovely". Oops, better save the crazy until at least the second class. I just told someone that when you really don't care much one way or another you suddenly turn golden. I have walked into traffic, run red lights, licked the top of soda cans (after my dad sent me the email about the lady that died). Nope I'm here to stay. yay me. Jed did manage to send me some signs to tell me I'm doing the right thing....at least I think that is what he means. I wish he would just talk to me. I'm a bit too dense to grab all the signs. But here's what I did get:
First off...I think he did this as a sick joke but in my 1st class the professor randomly started talking about fungus and fungal infections for about the first 10 mins of environmental science. If I had been closer to the door I would have bolted. Then all of a sudden when I looked up I realized he was wearing a butterfly tie and he starts talking about how much he loves butterflies and raises them!!! Who does that? oh and his room number was 2-29...Jed's birthday is the 29th.
My second class, business law, the professor is talking about his many marvelous accomplishments, all of a sudden he stops and looks at everyone. He says " I also used to help to save abused kids. I was a child advocate for the court system. Don't ever do that job it is absolutely horrible". Um...so, how did he know that is what I have been talking about doing? Not sure how that "sign" works but it was such an out of the blue comment that it grabbed my attention. My 3rd class, business software, a girl got up from the other side of the room and sat next to me. She said the computer at the other seat did not work. I looked down and her entire ankle and calf were covered in butterfly tattoos. Then someone else sat down in her old seat and the computer worked fine. Oh and this professor's name is Thomas.
So those are my signs from Jed. You can think I'm nuts...I am, but that stuff is pure Jed. :)

With the exception of the girl who had the "broken" computer the odd occurrence I have at the start of EVERY class I have ever taken continued. NO ONE will sit next to me until the ENTIRE room is full and they have no choice. I don't understand. I am fairly sure I keep the crazy covered pretty well. I just don't understand. In my first class the person that was forced to sit next to me was a guy who had to be in his 50s, he walked with a cane, he has something majorly wrong...like he was in an accident or something. His face is crooked and odd. He was very nice and he seemed to want to attach himself to me ....OF COURSE. (I am a magnet for old weird guys). He wanted to know when all my other classes were. Lucky me. I had a grudging admiration for him. It takes guts to do this, especially if you are even slightly different than the majority of the other students. The thing that really freaked me out was that he was hacking and coughing and choking the whole time. AAAHHH I still have a germ phobia. YAY me.
I won't even go into the whole run in with the campus police and my illegal left hand turn out of the parking lot. He didn't give me a ticket but he did take his revenge on me when I came in for my picture ID. He was manning the camera. The worst picture I have ever seen of me and that is difficult to do. His comment, "No do overs" smile, wink. Of course there was no way I would have a normal, uneventful day. Nope not me.
I get to do it all again on Wednesday...and the next Monday and the next Wednesday...etc
Oh Jeddie. I SO wanted to come home and tell you all my stories so you could do your giggle thing where you tease me and laugh. I almost called from the grocery store on the way home to see if you wanted steak and mashed potatoes. :( I caught myself before I hit "send". Thanks for all your help today....don't stop...I need a lot more! Missing you desperately, thinking of you every second. I'm gonna work hard and move fast and get to you as soon as possible. Mommy loves you
Love J & K

My Boys....August 2009


You know, I am sitting here thinking. I feel so miserable I don't want to write. I don't want to just keep writing miserable things, I feel bad for those reading...how crappy. The problem is...that's all I have right now. Thank goodness Danny and Savannah write good stuff.
I start school tomorrow. So does Savannah. I am not wild about this at all. I just feel like I have no choice. I have to do something....I can't do nothing, that does not pay the mortgage. I have to have an education, to get a job, to pay the bills.
Unfortunately I wasn't bright enough to get the education years ago. So here I am just now starting. I don't need it to be easy academic wise. I can work that out. I know a few smart people. What I need it to be is tolerable. I need it to not make me anxiety ridden. It's not so much the actual academic part, it is the process. The classes themselves and the process of the entire day. I wish I could explain it. I am hoping the anxiousness I have right now is because of the unknown aspect of it all. In theory this does not seem to be a big deal. In actuality it pretty freakin' huge. The only familiar part of my life now is home. Thank god for that. I could very easily just stay in here. That, unfortunately, is not an option. I just hope I am on the right path and I can figure out what I am supposed to be doing. I just don't know. It was easy before.....now everything is so far from easy.


Jeddie, I am missing you...everyone misses you...but not like this. I never, ever thought I would be without you. It's really just too hard to comprehend. Sometimes I am positive this has to be a nightmare but it's not. It is real life. Definitely NOT want I want. It IS what I have, so I am trying to live it. Trying, trying, trying. I keep reminding myself that you are healthy,happy and cancer free. Really that is all that is important. That is all I ever wanted. I was just kinda hoping you could do that here. :) Everyday down is a day closer to you....
Mommy loves you
Love J & K

Jed enjoying HIS pool at Grace and Jim's.


Every time I am down there hanging out there are little butterflies that fly all around us. Yesterday I looked down and there was one just sitting on my ankle....right after I talked about having my Woodstock tattoo turned into a butterfly and putting Jed's name on my foot. The butterfly was sitting on my Woodstock tattoo... :)
I went to a big flea market today, took Grace with me. It's a nice place but not all the vendors opened up there stands. We then checked out some antique co-ops in the same little town. I feel pretty good when I'm at flea markets...weird. I think they are just such a HUGE distraction..that's good. I would go back tomorrow...maybe I will there is another place near there that only opens on Sunday! I got a few white old table cloths. They are soft and make great backs for a quilt. I also got these big balls of fabric strips....not sure what to do with them but I'll figure something out.
That's all for now. Not too exciting but that's ok with me.
Goodnight Jeddie Spaghetti. I know you were with us today. I saw a lot of the little signs. I'm sure I missed more than I caught but I caught some. :)

I felt like Savannah when I whipped out my camera for this beauty. Missing you lovey.
Mommy Loves you
Love J & K

My Guy.
I'm not going to write anything today...except that ...I've got nothin'.

Jed...I'm trying..
Mommy loves you
love J & K

August 2009 the beach on Assateague Island



I want to write something profound and deep and meaningful....uumm. Not happening. How about cute and entertaining and clever.....uuummm..nope.
Just me whining...again!
School starts Monday. I don't want to go & I don't want to do it But then, I don't want to go and do anything. I hate the idea of day classes....all kids and then me. Yuck...crap.
Stuff for the luncheon seems to be coming together. Savannah and I wrapped some baskets yesterday. The pictures are on her blog. We still have some things we need to pick up from people so we have to get on that. Today we reveived a box of Baltimore Orioles stuff from my friend Micky. Thanks Mick, it's great you have gone over and above...thanks.
I hope all goes well with this luncheon, Savannah is really pouring everything she has into it.
Here is an update from her blog in case you did not read it...I don't think there is anyone NOT reading it but you never know...so here...

A few luncheon updates for you:
- Because the date of the luncheon is fast approaching for us we are setting some friendly deadlines. If you have graciously offered to donate a silent auction item or raffle prize we would like to have those in hand by Monday, September 6th. Please get in contact with me through email (srs0504@gmail.com) about those donations. I am always willing to stop by and pick them up from you.
- We would also like to remind you that purchasing your tickets online through PayPal at a discounted price is a smart option for you! This is available for you on the right-hand sidebar of this blog! (Savannah's blog) Pay with any of the four major credit cards and your tickets will be mailed right to you. This will be available up until Monday, September 20th. After that date, tickets must be purchased at the door on October 2nd for $20.00.
In a few weeks we will be hitting the "one-month-to-go" mark and it is both exciting and nerve wracking. We are thrilled for what this luncheon has become already and what it will mean for so many families. If you plan on joining us on October 2nd you can expect a fabulous buffet lunch, live music, a silent auction, great raffle prizes, face-painting and airbrush tattoos for the kids and so much more all for an amazing cause. All proceeds will benefit the Four Diamonds Fund to help children battling pediatric cancer.

That is the official update. Check her blog, for pictures of some things we wrapped last night, if you want to purchase tickets through paypal, & also because her blog is entertaining.
Ok, that's all for now. Oh and if you happen to live in Red Lion and find a motorcycle key let me know.....Danny has lost his. Actually, what he lost was his "spare" key because he lost the other key last year. UGH. I can hear Jed in my head..he is moaning and saying "Daniel, pay attention, you are always losing things". Poor Danny. He is distracted on a good day....and these are not such great days. So the distraction factor can be a problem....for me too.
Good night Jeddie love. I know I have to keep trudging along and figure out what I'm supposed to be doing here...but I really hate it. I liked what I was doing. Raising my son. Getting him well so he could start Jr High with DJ. That is ALL I want to do. I just want you. I want your smart comments and funny commentary, our conversations about everything, your giggle and that awesome smile. That is all I want....and that is what I cannot have. I don't know what to do...except just keep trudging forward. Everyday down is one step closer to being with you again.
Mommy Loves You
Love J & K

My Kiddies Easter 1998...Savannah 6yrs old....Jedediah 6 mos old.



I had to turn off Dr. Oz today....not just because he is weird. He was talking about fungal infections. Every time he said "fungal" I felt like I was being stabbed. Yes, I know, so melodramatic but the physical reaction I had to that word was horrible. Even now, just writing it makes me nauseous. Weird. It was not something I expected or even thought about.

So that was about the sum total of my day.
Good night Lovey. I am sad.... missing you so. All the pictures just hurt too much tonight. I don't understand how this became my life. I do not like it and the only way I will ever like it is if I wake up from this nightmare and you are asleep in my bed.
Mommy loves you Jeddie Spaghetti
Love J & K

Jed..The King of Cool even at 3 yrs old.


Mommo you get the contact cool....from sitting next to him~~~ :)
I think I don't have anything to say...no, really....

Jed, ......Oh Jeddie...I just have no words for how much I am missing you.
Mommy Loves you
Love J & K

I am missing my friend.

When I actually let the fog clear I realize the true horror living without Jed is. I hate when that fog clears. It is just misery. Why do I have to do this? I walked to the cemetery and on the way back I saw a family walking. They had 3 boys...3 of them. They were laughing and jumping around. They had 3 and I can't even keep my 1? For a second I am resentful, the next second I am angry and the next second I am just devastated. That is where I seem to stay. This is not getting better. I know we are here to learn lessons and we are to be rewarded when we get where we're going....well let me tell you, I better get huge freakin' brownie points for living with this pain. I just want my son.

Ok, so on a completely unrelated note this is a picture of my dog trying to get the Jack Russel on the other side of the fence.

He has grabbed a paw before but it belonged to the rottweiler and she wouldn't fit under the fence. Thank god. Every time my dog goes out if the neighbor dogs are out he goes nuts. I have to run out and take his picture. He is terrified of the camera so he slinks inside. What a pain in the A@#.
So how was that for changing the subject? I am pretty good at being random. But that's it for tonight.
Good night baby love. Missing you........such small words for such huge pain.
Mommy Loves you.....always
Love J & K

The best thing I have seen in months:


My favorite chunka love.....he does not care that I sew crooked....I knew he would be accepting!! So happy he likes it.

We said good bye to Iysis today. For about the one millionth time since I first met them I thank god for Trish and Pete. Danny had to go to Altoona today and Savannah was on call to go to Hershey Med for Jaz so I went alone. Trish and Pete were there and I stayed with them.....I cannot count how many times I have leaned on them. I got to see Barbie, she lost her daughter Katie in 2007. She is the sweetest woman. I have been thinking of her a lot lately. Jed LOVED to tell everyone that he knew an Amish woman named Barbie....he thought that was just so very funny! Leave it to Jed to see the irony in that! I saw some nurses. Lauren.....Jed was always worried about her cat! Iysis looked beautiful. Pink flowers, lots of white satin. and pink embroidery with an angel and the the words Going Home. Trish and Pete did not stay for the service and told me I did not have to either! I never thought of that but they are right. I saw Debbie, she knew I came and I said goodbye to Iysis. This was exhausting enough, I know they would understand us not staying.
I have had a headache for a week. At first I thought it was a problem with my tooth, then I thought I had an ear infection now it hurts on both sides and I think I have figured it out. I have been clenching my jaw so hard for so many days that it is making my head hurt. Need to work on that. Yes, that was me whining...oops
I talked to Dan's son, David's, mother...boy is that convoluted. Her name is Susan...let's just actually use her name! Anyway she called to see how we are doing. It was very nice and it was great to talk to her..
That's all for now.

Oh Jeddie, missing you desperately. I am so in need of your voice and opinion and slightly twisted view of the world. Iysis' mom said that when she heard the thunder the other night she thought "wow, what a party our kids are having". I am sure you were in the middle of that! Come see me in my dreams.
Mommy loves you sweet potato
Love J & K

I wish......I could just go back. Just for a minute. I have really just had enough. I want my son.


Not feeling too chipper. I spent the day making my favorite chunka love a blanket. I was fine until I was finished and realized it's crooked. EVERYTHING I make is crooked. Really ticks me off. I need 1 thing that I can do very well. I have a million things I can fake my way through but nothing I excel at. I am sending Lucas the blanket anyway. He won't care that it's crooked,,,it's super soft.
I just want my son.


Jeddie...this is getting harder and harder. How much longer? Tomorrow is Iysis's service. I know you will be there with me.
Keep a close eye on Jaz. She needs your help.
I really feel like screaming and throwing things...but I won't. Come talk to me in my dreams. I am missing you.
Mommy loves you Baby Jed
Love J & K

Mommo, "hey, it's a Christmas angel". Jed, "I KNOW, it's perfect, right?"

Savannah and I went with Adam and Tiersa to an art gallery in Harrisburg. Those of you that know me are aware that art galleries and such things are kinda above me. All I pictured was super chic people drinking wine and being....well, chic. It was a very nice gallery and people were dressed nice and drinking wine but everyone was really cool and VERY nice. I met Adrienne Stein. She is a phenomenal artist and an incredibly gracious person. Her boyfriend Randall was pretty cool too! Adam and Tiersa own some of her paintings. The paintings she had at this show were almost all based in various shades of blue. Of course I loved them. When I win the lottery I am going to commission her to paint me a picture of Jed and Savannah on the beach with the ocean in the back round. and maybe Dan and I in the picture too. oh to dream! Hopefully Adrienne will be at the luncheon. Anyway, it was cool, I had fun and no one was pretentious or snotty. The four of us ate next door to the gallery at a place called the Firehouse....it was in an old firehouse....hence the name. Food was good. We laughed like idiots. Being the wild and crazy people we are I was home before dark!!

Jed and Hop hanging at the ranch.

Savannah just told me that Jaz is out of the PICU and back home on 7 west.....right back to 56...Jed's room. Her mom, Tammy, told Savannah that she prayed for Jed to watch over Jaz and then she found a quarter in a clothes drawer right after that. :)
Dan is watching The Hottest Beach Bodies and whenever a guy comes on he says they are stupid and changes the channel....when a super model is on he is quiet and staring.....dork

Good night Baby Jed. I told Adam I bet you are saying that the "rest in peace" stuff is BS. I'm sure you are busier now than you have ever been! Your doing a great job taking care of everyone. I know you are here but I still am missing you horribly. Everyday is worse but everyday I keep waking up...not sure exactly why or how that keeps happening but as long as it does I guess I will try to keep going. Come see me in my dreams, I am missing you.
Mommy loves you
Love J & K

Yesterday Mom, Savannah and I went to see my Gram. I was worried that she would not know who we were because she has been fading in and out. That worry was completely unfounded. She wasn't in her room. Her nurse told us she had a PT appointment. We went on the hunt... We found her in the basement. Mom looked through a small window in a door and spotted Gram in there. She was doing her workout while entertaining all the nurses. They were giggling with her. I looked through the window. When she looked up & saw me her eyes immediately lit up. She knew me right away. Savannah looked over my head and she knew her right away too. The three of us went in for a few minutes and said hi. Gram looked at mom and said "smile Linda" !! It was such a relief to see her looking and sounding so good. I really think that being with other people is very good for her. Her mind needs that stimulation. Now I know where Jed got his "bounce back" from! Just when you start to really worry she rallies.



This picture has nothing to do with anything I just LOVE it.

Today Savannah and I went to my school to get my id badge and pick up my books. In true Kristin fashion I forgot my car registration. They would not let me get my ID badge without registering my car. Dorks. At PSU York I didn't have to register my car. I guess because I only took night classes. Ugh, then again in the great Kristin way...I didn't know I needed my confirmation email to pick up my books. Sometimes my flakiness even irritates me. Thank god the guy in the book warehouse was very nice and took care of it for me. :) I now have all my books and I have the 1st 2 weeks of school to get my badge and car tag. When we left there we went across the street to subway and got subs to take to......Hershey Med. Yes I ended up back there today. Savannah's friend Jaz went into the PICU today and she asked to see Savannah. It ended up being a much better visit than I anticipated. Jaz had a lung biopsy and they found no bleeding but she does have some kind of infection. They have to wait and see what grows in the cultures. Christ I wonder how many times in 8 years I have written that. Anyway Jaz was happy to see Savannah and it helped perk her up a bit. There is a chance she might even be back home (on 7 west) by late tonight. Like I said, much better than I had thought it would be. I also got to see some people I hadn't seen in a long time. I saw Carol, our nurse in the OR. She has been there for just about all Jed's spinals. Jed really really loves Carol. The very few times she was out on a spinal tap day Jed made sure everyone in the room...including the Dr. knew that they HAD to do stuff the way Carol did!! I cannot stress enough how important having that familiar face was to Jed. When he saw Carol he knew that she knew him and what worked best. His anxiety level was almost nonexistent with her in there. He would get ready and then he'd say "here comes the white stuff, by mommy, peace out"!! and off into lala land he would go. Carol always brought "her kids" seashells and things from her vacations. I have them all. This past Christmas she gave Jed an ornament that says hope. I cannot tell you how much that meant at that time and still does.
As I was sitting with Jaz's parents I was thinking....I wonder what it's like to be one of those families with just normal crap to worry about? I don't think I remember being one of those families that don't even THINK about kids being sick...I mean really sick. I wonder what that is like....to live your life without that cloud.
Anyway. I am hoping Jaz gets back to 7 West tonight or tomorrow morning. The connection Savannah has with her is wonderful...and a bit scary.
Again, I was pretty ok being there....it was leaving that makes my heart beat so fast it hurts. I would love to just lay on the floor and sob in front of the elevator, but, well that is not my style...and it's about the last thing those parents and nurses need. So I just put my head down and go. All the frantic stuff just swirls around inside.
It rained so freakin' hard on the way home I don't know how Savannah could see to drive. We got home and they said on the news to stay off the turnpike.....of course right where we had just come from! There was flooding, yeah..duh we saw that! It wasn't raining that hard here. But it was enough that I didn't water my grass tonight. When we got in the car to leave the hospital it was 3:33. Then Jed's favorite All American Rejects song came on the radio and when we pulled into mom and dad's it was 4:44. I think Jed was telling us he approved of our visit...and that he was along for the ride too.
Speaking of signs from Jed, Savannah and I are going to see George Anderson on Sept 9th on Long Island. I have read all his books. He is the medium that all the mediums go to. He is amazing. Yes, it costs a fortune, money that I do not have but I don't care. If this guy can talk to Jed...I need to talk to this guy. Please don't tell me if you think I'm crazy...I don't care. I am excited. It's a Thursday and as I said the other day I decided to change my schedule so all my classes are Monday and Wednesday! Savannah on the other hand will miss school.....but she's like smart and stuff so she will be ok.
Jaz's parents told me today that one of our fellows, Dr. Mikey, wants to come to Jed's luncheon. I am so happy and hope he does. If we have a bunch of people from Hershey there I will be thrilled.

AAHHH funny kid. This was in Oakland, Ca 2001. I love how he is making this face like it is the most normal thing in the world.
So I have babbled a very long time. 7 West nurse Carol, I guess I have to come up there at midnight to see you! Maybe you can come to Jed's luncheon? Shelly I hope you get Jaz back tonight. Kami, it was good to see you but as group leader you should schedule yourself off for October 2nd! O.R. Nurse Carol....I hope to see you on the 2nd. ( we have 3 nurse Carols) :)
Everyone send Jaz lots of good vibes and healing energy. Also send Trish, Pete and their chunka love baby boy some love and good vibes too. They are just trying to be permanent parents to that sweet little man and it has been a roller coaster. Keep Iysis' family in your thoughts too as they make their way through this hell.
Jed, you were very busy today. Savannah and I know you were with us ALL day. Thank you. I can't have what I want but I know you are giving me enough to keep me going....even if I'm not sure whether I want to or not.
Mommy loves you Baby Jed....always and forever, more and more everyday.
Love J & K

Iysis....another beautiful soul passes on to a more beautiful place.

So tired of cancer.
I hate that in order for our kids to not suffer they must leave us.



Boating Day on the river 2007

Jeddie .....Words escape me. The pain is huge, the sadness and loneliness cannot be explained. The only thing that could make it better is the one thing I cannot have. I miss you. But in true Jed fashion you let me know you are right here with me. I opened the box with my school book in it and there was a huge Dr. Pepper advertisement in it!! Thanks friend. Say hi to Iysis for us.
Mommy loves you sweet pea
Love J & K

This was last year right about this time. He had an MRI for his eyes and then we had 4 hours until his actual eye appointment. We saw a movie and ate at The Hershey Pantry. They have sticky buns as big as my head.

This was also last summer around this time. Livi-Mac and Jed at Red Lion Days. It was sooooo hot!
Nothing exciting happening with me. Same old stuff. I did actually have a tomato red enough to pick....our 1st one. I told you before that everything I am growing is feeling my apathy and growing at a snails pace. I have no problem with that. I am happy with apathy. Well, happy is a dumb word. Anyway...
Mom and I went to Grace's today. Tiersa and The Mac came down too. Savannah stopped by after her shopping trip to Best Buy. Nana and Pappaw bought her the camera she has been wanting. One with lenses and such...way too many buttons for me. It's pretty cool.
Tomorrow we are going to see Ma B. It is always a guessing game as to whether she will know who we are. It sucks.
Please send love and prayers to Iysis and her family. Pray for peace and pray for no pain. She has put up a valiant fight. Now it is time to rest. Her little body has had enough. Debbie and Bob, my heart is with you.
Jed, please keep an eye on Iysis and her parents.
I wish you were here with me. I miss you. I say it everyday....and everyday it grows. The missing gets bigger and bigger.
Mommy Loves You
Love J & K

Who is that man?? 2002

2002
Originally uploaded by kbuckley69

The funniest kid EVER!
I am not quite sure what is going on but my internet connection keeps going on and off....that does not usually happen. Weird.
I went with Savannah to talk to Athena about the luncheon. I think it is going to be great. I hope to see as many of you as possible. That's all for now. Going to the pool tomorrow.
Goodnight Jeddie. I guess you are well aware that without a miracle Iysis will be with you soon. I know her mom is already up there so Iysis will be fine but her Grandparents, that have raised her, will not be. Oh Jeddie it is so horrible. Being left here is miserable. It just seems so unfair. I know we are here to learn lessons and teach lessons but really...enough is enough. These poor people have lost so much. Baby Jed, I am trying, really trying but this is yucky and hard and I do not like it. I do not like green eggs and ham, I do not like them sam I am. Ok, so I am losing my mind. Better stop now. Oh, I did buy my "school supplies" today and I packed our backpack with them :).
Mommy loves you ...always
Love J & K

Jed and one of his Favorite things...room service!!

A cancer kid mom in Australia, that I talk to on Facebook, had a status update yesterday about having KFC for her daughter's birthday dinner. A guy actually left a comment giving her crap about feeding her kids KFC. He reprimanded her, saying that feeding sick kids stuff like that will make their disease worse. He told her that his son is still alive after neuroblastoma because his wife cooks everything his kid eats. He then told this mom that she should follow a recipe his wife uses for chicken strips, they are much healthier. I am the first to agree, organic and fresh is the way to go but when you have a child that doesn't eat or only craves certain things because of meds they take....you feed them whatever they want. KFC did not kill my son, nor did the pizza or fried cauliflower..cancer killed my son and the only thing I have figured out over 9 years of being involved in this hell is that it is controlled by 1 thing....luck. There is no rhyme or reason as to which kid gets sick and which doesn't, which sick kid lives and which one does not. I have seen both sides. I have watched parents do all the research and do everything as right as they could and their kid died. I have also seen parents that do nothing to help their child. They do not stay in the hospital with them...some even go on vacation while their kid is getting chemo. The last thing they were worried about was what their kid was eating....that kid is fine. Doing well and growing up. So really the organic milk Jed drank gallons of did not keep him alive anymore than the kfc killed him.

I am grateful to the parents that offer advice based on their knowledge but this man was not trying to help, he was judging and letting everyone know his superior parenting is what has kept his child alive. This man is delusional. I hope his child lives a long healthy life...no one deserves what these kids suffer and no parent should live the hell some of us live but I do hope he reconsiders HOW he imparts his knowledge of caring for a cancer kid. The judgmental and superior attitude is not necessary. Nor is it helpful. most of us carry the weight of great guilt for our coulda, shoulda, wouldas...the last thing we need is to add to that. Some of my greatest memories are of watching Jed eat. Sometimes he would want something so badly and only take one bite....but he got what he really craved and that is what matters.

My memories of getting up at 2am to make scrambled eggs with cheese or warm up pizza and fried cauliflower then sitting in bed with him while he ate and made happy noises are completely priceless. The fact that this guy....who has lived this...could be so judgmental to this mom, makes me ill. Dude,,,,learn some people skills and stop the judging and holier than thou attitude.

Chilis for Jed's 12th birthday
Onward...in doing my schedule I realized Jed's 13th birthday is on a Wednesday...my LONG day at school...not sure how I will handle that. I guess I will wait and see. Savannah said..skip classes. I not only don't think I could spend all day away from home, I also do not think I will actually retain anything I learn that day anyway. Like I said..we shall see.
I could make this post days and days long by posting pics of Jed eating....but I will spare you.
We saw DJ and Dave and Connor today at home depot. love them...so much. Danny took Savannah and I to the new local restaurant, Crimson. It was pretty good. Service was great, Danny loved his prime rib. I like it there.
Savannah and I went over to mommo and hops while Adam and Tiersa and The Mac were there. That kid is a nut!! She is so funny! She found a tennis ball and told Savannah " I throw it, you go get it". Savannah said, "no throw it to me". Liv said, "I throw it into traffic" and she did. Then she laughed like hell as Savannah had to run down the street to get the ball....hahahaha.
Oh my, Baby Jed......what can I say that I haven't already said a million times? I MISS YOU. This SUCKS. You know the same old stuff. I took a Penn State balloon to the cemetery today....I also trimmed all the grass but I know you don't care about that! Come see me in my dreams. I miss your smiley face.
Mommy loves you
love J & K

Jed getting Walter's attention so they can chat. This is the spring of 1998 so Jed is around 8-9 months old.



Whoa Walt that's pretty deep.

Jed's hair is awesome.
So today Danny worked, I just hung around and researched the cheapest place to get my books. If I had bout them all new it would have been over $500 for 4 books. Used from the school bookstore still would have been $400. I ended up getting them in 3 different places and paid a total of $280.00. Not too bad. Still too much though! I also decided to reschedule my classes so I have everything on Monday and Wednesday. That is less commuting...so less gas in the car. Mondays I will be there from 9-6 which is not bad at all, Wednesdays I am there from 9-9:30.... The only not so great thing is that I have a couple gaps between classes but I hope to use that time to get some of whatever homework I have finished. We'll see. I know better than to actually think things will pan out the way I plan them. So other than that and going to eat some Mexican food with Danny I did a whole big ....nothing. One of those days. We did ride over to the cemetery...of course. When you pull up Jed has this bright green patch in a big oval! The grass seed has grown a little bit the the crab grass was so happy for all the watering we did it really grew and turned green. At least it's green.
Tomorrow maybe some swimming.
Oh, one more sign that school is what I am supposed to be doing. I spent yesterday with the Rose family and when I got home I received a letter from HACC with my email password ....they pick it, not me...ROSE is my password. Ok, you can think I'm nuts but I know it's another sign.
Jed, your physical absence from my life is so big....I am missing you baby love. It really feels like half of me is missing. We are doing our regular "red neck Saturday night", Cops, Cops and America's Most Wanted. Come hang out with us.
Mommy Loves you
Love J & K

Mya..3 , Savannah....6, Autumn... 4 weeks and Jed... 3 weeks
What a group!
Jed's first birthday. Savannah, Mya, Autumn and of course Jed.

Savannah and I went to Bel Air to visit Casey and her clan today. She not only has Mya...who is 16 now, Autumn 12..she has the twins Noah and Emma they are 10 I think! She has her hands full.
It was a great visit. We always seem to pick up right where we left off! Casey is hysterical. We were laughing all afternoon. It was a wonderful visit. Her Noah resembles Jed in many ways. I had to try to not stare at him. The girls are gorgeous like their mommy. They also have the cutest dog. Little white thing,,SO cute...I want one.
I am tired so that's all for now.
Jed I missed you so very much today. I did get to see a bit of Ed EDD and Eddy, Phinias and Ferb and courage. Noah is like you. I had to stare at him and then it just hurt to think that my son was not there. I want you home with me.
I can't keep writing tonight. I just miss you...so so so much.
Mommy Loves you
Love J & K

Contemplating.....

Jed's self portrait.
The Jed feet. He liked to tell me that his toes are longer than my fingers and I think he was right. Love the "crocks" tan lines.

Yesterday I went with my dad to see my Gram in her new home. It's not a bad place and everyone was very nice. She knew who I was right away. She did have trouble sorting out who was who along the family lines. Once we explained she did retain it....kinda. She asked how many kids I have. I said 2 and told her their names. She said "I know Savannah, she is beautiful and really, really smart". I said yes she is. Then I could see the wheels turning in her head. She got quiet and said, "I am thinking, I am thinking about Jed". She knew there was something special she was supposed to know but the fact she was looking for must have been just out of reach. I told her "Jed is in heaven with Granddad". Then I had to say Doyle because she was confused as to who Granddad was. She said she remembered about Jed and reminded me she had lost a son also. I let her know that Jed and Johnny are just fine, and hanging out together. She told my dad, as she pointed at me, "this girl has been through a lot". Dad agreed. It was an interesting visit, sad, but I really was just waiting to see what she would say next. She's pretty funny. It was also great to see the recognition creep into her eyes when she understood a funny comment Dad would make. You could see her putting all the facts together. When we left she told Dad to "bring her the next time you come", pointing at me again. My mom just told me my Aunt was there today and Gram was not as coherent as yesterday. Up and down....always up and down. I told someone my life is a roller coaster that I am riding from my kitchen table. I spend a lot of time here. My roller coaster must be underground though. I get to the top and see a bit of light and life but then back down I go...that's ok, it's quiet down there for the most part and I know at some point I will come back up again....even if it's only for a glimpse of what everyone else is living.
Danny was reading Savannah's blog and decided he should not write because she writes so well he feels dumb. I told him his blog is different..in a good way and it is his view on the world. His writing is just fine. The great thing about blogs is there are no grades or edits from others....well most of the time. If people don't like it they just don't read it. What I didn't tell him was the speech I gave him was one I had just given myself because I did feel slightly inadequate compared to my kid. The good part for me is I can always say she is so good because I am her mom :) ....but I won't, she is unique all unto herself. Both of my kids are very individual. Complete, separate people. Extraordinary people with beautiful souls. oh and smart mouths....I donated that part. Anyway, so I reminded myself that just because Savannah's writing is exceptional does not mean I have to stop....unless I want to. I reminded Dan too. So he updated. "I wish I was a Fish". The eternal Dan retort to any of us when we say "I wish". Gotta love it.
I think I am finished babbling. Tomorrow the extraordinary writer (and worshiper of Taylor Swift) and I are headed to Bel-Air to visit Casey and her clan.
Good night Baby Jed. I did not water the grass seed today. It rained a ton last night and stayed damp all day today. I really trimmed the grass and washed everything off yesterday. Like you care....I sometimes can hear you in my head when I am over there. You are saying, "good god mom, enough trimming".
I wrote this whole thing without crying. Usually I sob the entire time. I refuse to this time....oh wait, I cried most of the day...think I must have depleted my tear reserve.... for a minute. Missing you, it's so deep and so vast there are no words. This missing is just so huge. Mommy Loves you Sweet potato.
Love J & K