Fact: The National Cancer Institute's federal budget was 4.6 billion, of that, breast cancer received 12%, prostate cancer 7%, and all 12 major groups of childhood cancers received less than 3%.
Fact: One out of every 5 children with cancer dies.
Fact: Childhood cancers are the #1 disease killer of children. More than cystic fibrosis, diabetes, and pediatric AIDS COMBINED.
Ok that's all of that for now.
Here's my next thing. On September 24th Wisehaven Banquet Hall is hosting The Angel Quilt. The doors open at 6pm, light refreshments will be served and speeches will be given starting at 6:30. The event lasts until 9:30. The Angel Quilt is a beautiful quilt filled with our babies that are now angels because of cancer. The group Make Some Noise, Cure Kids Cancer Foundation has made this awesome quilt and it will be touring the country with a week long stay here in York. Thanks to Louise of Wisehaven. She even arranged that it be here over Jed's birthday. We would love to see you all at the reception or we also will be there Thursday ...Jed's birthday. (time to be announced)
http://www.makenoise4kids.org/NationalQuiltLandingPage.cfm
That is the link to the foundation and info on the quilt.
info@wisehavenyork.com
That is the email for Wisehaven if you have any questions or would like to come.
Moving on...That is the email for Wisehaven if you have any questions or would like to come.
Just a cute pic of my Jeddie
Always sparkly....always ready for a party :)
Always sparkly....always ready for a party :)
Next, we are still receiving donations for the luncheon, it is so fabulous. We have t-shirts for sale. They are red and charcoal. On the front are stars and it says Change The World and the back has the 2nd annual luncheon description. All kids sizes are only red. $15 each and $2 for shipping. Send an email to jtsfoundation@gmail.com with what color and sizes you want and then send your check to:
The Jedediah Thomas Smith Foundation
233 N Charles st
Red Lion, Pa 17356
Our Incredible bartender..and oh so cute!!! Wearing a Luncheon Shirt too...can he get more perfect?? Nope :)
As usual there are so many things in my head. I had breakfast with friends from high school. Still seems weird to me. It took us over 20 years to start to hang out and I know I give Jed credit for everything but I think he deserves it for this. I really feel his last 6-8 months here with me he made sure that I got this support system all set up. We are going to the beach on Wednesday, As of now there are 3 of us, not sure how many more.
I have never gone away with people that were not at least partly family! Yes really!
While we were having breakfast I get a text from my ultra cool neighbor Maggie the Magnificent. She said there is a weird guy on your porch looking for you. He is leaving a paper taped to your door. I asked her to tell me what it says.....well looks like Harley Davidson wants their motorcycle back. I am behind in payments a few months and I guess they have had enough. I have been saying I am selling it since Jed died but I have made very little (none at all) effort to sell it. I think I was just hoping it would disappear. It makes me sad to look at it. It represents a time I was hoping would be here forever....the Jed is finished with cancer time of our lives. He is finished with cancer but he is not here with me...so so wrong. I don't want the bike, I don't ride it but tonight when I thought of taking it to the dealer to see if they will buy it I kinda had a melt down...well as much as I have those. It will be like giving up that wish...signing off on that hopeful time. It's not the bike, it's what it represents. I don't want to deal with it...but I have to. I might as well get the money I owe for it and pay it off instead of letting them repo it....that's funny, I wonder if it would be like that bizarre tv show..repo man??! So I will do the smart responsible thing...oh yipee. It's funny...and a bit scary to think that repo thing could actually happen....I guess I better put on my big girl pants and deal with it. ugh
Tonight I realized that it is getting dark earlier....I very much dislike that. As I was looking at the pretty pink sky, thinking of how much the grayness of winter bothers me I also started thinking of how things look so normal, even me, when everything is as far from "normal" as they could be. I was thinking about how I can be going along, doing whatever, pretending things are chugging along and then out of the blue I feel like I am just knocked down, the feeling is so instant and intense I cannot describe it. So much more than pain...just to big to explain. It is really hard to describe but this is the picture I have of it in my head...let's see if I can write it so it is understandable. I think of an outline of my body, with smaller outlines in it. I breathe in and you can see the inside color getting bigger, taking up more space, then I breathe out and it gets smaller. It goes like that in a calm rhythm. On and on, calm and normal the only thing is is that every inhale is painful. You can't see that, but every inhale hurts. The outside line is what everyone sees, always calm and "ok" then suddenly, for no reason, when I breathe in the inside gets so big it makes the outer outline disappear so all that is there is the inside. The inside is the destroyed, sad ...way f'd up me. (yes my vocab needs work) It is always there, just under the surface but very rarely do other people see it. It takes me by surprise when the outside disappears for a second. I never know when it is coming. It can happen at any time, in the middle of a laugh, a smile, a conversation with a stranger or a friend. For a second all that mess, all that pain and sadness is on the outside.
Wow, that was a lot of dramatic stuff. It seemed less dramatic in my head, I guess because it's just a picture. Putting words to it is weird. But we all know how weird I am :)
again, let's move on.....
I know you all read Savannah's blog so you know what's up with her. She is officially a Family Relations Captain for THON 2012...amazing. Her title is "Motivational Leader". I think of how over the top proud Jed would be. He would be telling everyone! I wish he could have seen Savannah as an official THON member. He was always so so proud of her...every time she did something he was the first to tell everyone. Maybe sometimes just to bug her but most of the time because he was so proud. Savannah's hard work and dedication guided by Jed's spirit and love of THON is leading to amazing things....and I know will only get bigger! I look at Acacia and Gamma Phi, they were always into THON but it took the combination of certain members (you know who you are) and Jed as their THON child to propel them to a place where they are now role models. They set the bar so high, showing every organization how the adopt-a-family program is supposed to work, everyone strives to even get close now.
Maybe it's just in my head but so so so much seems to all come back to Jed. Not that I am biased or anything!
Ryan Mead is also a THON captain. Such hard core over-achieving is really cool to watch! I am excited to see what's next.
next :) yes my transitions from subject to subject are not very smooth today. Oh well, anyway. Danny's daughter went home. It started raining the day she left and has rained almost non-stop since. Today was the 1st day we have seen sun in a week! Danny got his elbow operated on on Thursday. They shaved a bone and moved a nerve ...some other stuff too...yuck. So he is a 1 arm man right now. He gave Maggie a chuckle when he was out in is easy on pants, button down shirt (can't get the cast in a t-shirt) trying to light the grill while I was at school. All the rain had knocked out the pilot light. He did it though!
I feel bad that my 1st ever "girls" vacation (sounds creepy) is when danny is an invalid. Gotta love my mom, she said she would take him to his doc appt. and I am sure she will feed him too!
The foundation helped a family officially for the first time this week and it seems to have shown us where we want to concentrate. We assisted a family with end of life/funeral costs for a 5 year old boy. Danny even delivered the package personally so they didn't have to wait for the mail. The more I think about it the more I think this should be the main way (not the only way) we help families. Jed was always thrilled with gifts and things from people, everything was ALWAYS appreciated but I think, if he could have told us, he would have said he was most grateful for the help we received after he was gone. He always worried about the Mommies (& Daddies) that lost their children. Because of this and the fact that there isn't much assistance after your sick child is gone, I am happy and honored that we were able to help someone in this way. I wish we could fix it, or I had magic words but right now I don't even have words to comfort much less words that ease the pain. Being there at the end is all we can do. It is a privilege.
I guess that's enough, I was a bit wordy tonight. Here, enjoy some awesome Jed pictures :)
Jed doing his best "look I'm Danny"
How Flippin' cute is he??
The famous ball signed by Joe Pa :)
my biker friend :)
I miss you friend. The emptiness your absence has created is beyond measure. But I see your signs and I know you are close.
Mommy Loves you always
Love J & K
Mommy Loves you always
Love J & K
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