Friday, March 13, 2009

March Update

Happy Friday 13th to all of you superstitious ones!

Sorry for the long delay in any type of updates. As many of you may have noticed the Jon Jon's Journey website had some technical issues(I didn't pay the bill) and was down. I'm happy to say that the situation was resolved (I found out about the bill and paid it) and it will be back up and running soon. With the help of our friend, and websire guru, Bill Fleming it will be bigger and better than before, if that's possible. We plan on having it as a tribute site for our little guy and also as a fundraising/research update site as well.

Since Jon Jon passed away we have been slowly getting back to life. I think everyone realizes how difficult it is for us but, we manage to perservere through our grief and continue on. Claire is doing wonderfully in school and is really coming out of her shell and developing into a magnificent little girl. We think being in Jon Jon's shadow through all of this kept her from displaying what a funny little sweetheart she truly is. We knew it was in there and it's nice to see her break out of her shell.

Anne has been going back to work at the farm more frequently and getting back into the saddle, literally! I think it's therapeutic for her to be back out there amongst her equine freinds. I'm sure it's difficult as well, because Jon Jon was always out there running around with her and Grandma and keeping them company. I'm sure she catches herself looking around for him for a brief second every once in awhile before the pain hits and she remembers that he is gone. We still do the same at home on occasion and those incidents are becoming less frequent but, I'm sure it'll continue for a long long time.

As for me, I went back to work the second weekend in January. It was difficult to come back but, I felt it a better alternative to sitting in the house all day and immersing myself in grief. Unfortunately the weather limits activities I find therapeutic (golf, biking, etc.) and I needed to get out of the house. So coming back and taking care of the sick and injured is now my therapy. I know I'm sounding a bit sarcastic and I am a little but, after spending more that half of my life doing this I missed it a some while I was away from it. However, I was very grateful that we could both be home with Jon Jon during a vast majority of his battle and especially for his final few months. We are so thankful for Anne's friends that held down the fort at the farm and for my co-workers that switched their schedules around so that we were able to be there.

Since Jon Jon died we have been trying to keep up on what has been going on in the DIPG community. More so Anne than I. She finds it therapeutic to keep up on children that are currently battling the disease and those who have lost their battle. I can't even look at the sites. I begin to cry at the picture of those beautiful little kids all swollen up from the steroids like Jon Jon was. Maybe someday I'll be able to but, not yet.

Last weekend Anne and I went down to Cincinatti for a big Gala for The Cure Starts Now Foundation. The foundation was started by a family who lost a daughter to DIPG last year. The foundation funds research and treatment trials for DIPG strictly. The new theory is that DIPG is the "big bully" of brain tumors and if we can defeat this one, then we can beat all of them. Obviously, the cure is a long way off and needs a lot more funding. If you get a chance, jump on their website and take a browse at .

The Gala was very nice and we had a wonderful time albeit, emotional. Anne had her picture taken with funk icon Bootsy Collins who made a guest appearance. I'll post the pic at some point. The next morning we went to the hosts house for a nice breakfast with other parents that lost a child to DIPG. It was very therapeutic for us to be with them and share our stories about our kids and their journeys. It was also nice to know that many of the things that we have been thinking and feeling in our grief are shared and completely normal for our loss. Most importantly, we met parents that lost their children a year or two before Jon Jon died and we found that their grief has eased a bit and day to day living becomes easier. We see that others have experienced this terrible loss and have continued to perservere.

Well, I have been typing this update in between calls at work and it's now time to go home so I had better finish my paperwork so I can leave. Our entire family would like to thank everyone for their continued prayers and support. It is helping us to continue on and we truly appreciate every bit of it. We will update as we can.

God Bless and much love,
Jon, Anne, Claire and our Jon Jon up in heaven