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.
Jon, Anne, and Claire