Thursday, December 4, 2008

Life Goes On

Hi All,

It has been almost 3 weeks since Jon went to heaven and we are trying to adjust to life without him if possible. It is a terrible void in our lives and we feel a bit like lost souls. We spent the past year of Jon's life just being with him, enjoying him and caring for him but, in a way we grieved for him everyday for all he had to lose and go through. Claire is doing well and starting to get excited about Christmas, it is hard to be sad around her because when we are feeling low she will say something so funny that we have to laugh she truly keeps us going. The social worker and child life specialist and Jon's nurse from Essential Kids have come to the house to help Claire express her feelings and understand what has happened. We have greatly appreciated their help as it is so hard to explain to a 5 yr. old the concept of death. She has made some interesting comments about wishing Jon had never gotten sick and wishing he could be the way he was when he was born.

I just wanted to take a minute to thank everyone for being with us at Jon's life celebrations, all the cards, food and kind thoughts and prayers it has meant a lot to us. We are thankful for having 7 of the happiest, and most fun years with such a special little guy and are glad you all got to share some of that joy with us.

I am apologizing now if in the future I drive any friends or acquaintances a little crazy with my emails or pleas to raise awareness of childhood cancer. It is shocking how little funding for research there is especially the DIPG kids. It is thought that between 15-20 kids a month die of DIPG and in over 30 years the treatment of DIPG has changed very little if at all. Take a minute to view some of these sites and join People Against Childhood Cancer and sign the petition it only takes a few minutes . It is pioneered by a man originally from WNY, I believe Orch Park who now lives down south and lost his son AJ to cancer. He has started a great movement to raise awarenes and funding money for kids cancer. http://curechildhoodcancer.ning.com http://icouldbeyourchild.org// http://www.thecurestartsnow.org/ these are all wonderful sites that are doing great things and sharing insights. Also Roswell and the Cure Starts Now have christmas cards designed by kids who have or still are battling cancer and the proceeds benefit research.

We will be travelling the week before Christmas with Claire to Disney, we thought it would be nice to get away and spend some time with Claire and hopefully lift our spirits. We thought it would be fun to see Disney all decorated for Christmas.

We wish you all a very Merry Christmas and a very happy and healthy New Year, please stop and see us over the holidays.

Love,
Jon, Anne, and Claire

3 comments:

Linda Thomas said...

Dear Anne, Jon and Claire,

My thoughts are with you as you learn to cope with your new life without JonJon's physical presence. It is so important to remember all of the good times that you had with him, and to continue to appreciate the life that you have now with each other. I hope you have a wonderful time in Disney and a blessed Christmas!

Hugs & Love,
Linda Thomas-Send Love Today

J said...

Jon, Anne and Claire

I bet it has been quite a while since you did something for yourselves, so good for you. I hope you find time to relax and enjoy each others' company as well as all of the sights at Disney. Wishing you a very merry Christmas and a beautiful new year.

Judy and Scott Zitzka
(your friends from Newstead)

Tiffany from the Barn said...

Dear Anne, Jon and Claire,

My school has a club called Relay for Life. This is a clun that is against cancer. I have recently joined this club and your story has encouraged me and my classmates. I hope you all had a great time in Disney and a good Christmas.
Please, if you need ANYTHING, call us at anytime!
~Tiffany from the barn
and The Delaney's