Sunday, April 13, 2008

Update as of Sunday April 13, 2008

Hello Everyone,

It has been a long time since I have written a post.

Megan does a much better job than I could do if I spend 2 weeks on researching the English language.

But there are some things that I want to tell you, so expect this post to be disorganized, direct and brief.

First and foremost, it is more difficult than I could have ever imagined being without Maria. Every day we feel the emptiness. Maria was the leader, translator, negotiator, disciplinarian, and friend for the boys. They would listen to her, laugh with her, fight with her, draw with her and pray with her. It is like she is still at school or at a friend’s house when I am home and she is not there. I think about her all the time.

I remember when Megan was on bed rest with Blake and I was so lucky to take Maria to the bus stop every day. I would sing the song “Here comes the Bus, do do do do, here comes the bus and I say, it’s alright. Do do do do do, do do do, do do do do do” to the tune “Here comes the sun” a song by George Harrison from The Beatles' 1969 album Abbey Road. And every single morning at that stop, she would complain and say to me, “Daddy, stop singing that silly song”. That memory will never leave my mind.

I love helping anyone with any questions, we get many other families that call our house and ask us our opinions, thoughts, questions, who and how to contact people, what did we do, what did we think about such and such, did we look into this treatment or that treatment, what would we do differently today, etc. And I do it every time and it is never a bother. I can still remember the day we found out the diagnosis of Maria (April 1) and realized how clueless I was…two years have passed and I have met so many great doctors and I have read so much about Diffused Intrinsic Pontine Gliomas that I know I understand the disease better than some doctors…but I also know that I know very little and that the doctors on our medical advisory board and many other doctors know a hell of a lot more than I ever will.

I also get a lot of questions from friends, family members, acquaintances and people I just meet. Here is one I got the other day. “ Ed, how often do you get sad and cry?” At first I said to myself “What the heck kind of question is that, you have a lot of guts to just flat out ask me something that personal, besides, everyone knows men don’t cry and I never get sad.” …… I responded to my mother and said, “I am sad everyday, but I can’t let it get in the way of supporting my family. Work is important and is a great distraction from reality.” I also said to her “ the pain has not diminished even a little and at times it feels worse when I see a photo or hear a story about Maria……and I cry almost every single day..usually driving to or from work with the radio playing some song about a little girl or a daddy losing his daughter to marriage or a little girl growing up or going to prom or sometimes hearing about another little girl doing something great…Easter sucked and I didn’t even see that coming…..a million beautiful girls all dressed up at church in their Easter outfits…they all looked so beautiful and I realized that we buried Maria in her Easter outfit…..I actually cried in church…..oh, don’t worry, no one saw me………..

You know what else made me cry recently, an email I received from a young woman named Kati Corbitt. Kati was Maria’s group leader at the St. Raphael Vacation Bible School (it is a week during the summer and the kids have an absolute blast…you don’t even have to belong to the parish to go (at least I don’t think you do) you should send your kids …anyways, Kati took great care of Maria that week and made sure Maria had a great time. Well, we got an email from her asking us if it was OK that she form a relay team in honor of Maria for the American Cancer Society Relay for Life of Bay Village. She has started this team with a few of her friends and Megan and I are so thankful and touched. The picture in this post is of Maria and Kati during that week. The team is called Hugs For Maria.

Please check out everything that Kati is doing for ACS. ACS is a great cause and I am asking you “brother can you spare a dime” and log on and support Kati and her friends to help ACS. Even if it is just a dollar…let them know we appreciate everything.

Here is the link

What else is going on……….today was another warm day, must have hit 40 degrees, wow is that warm, I was beginning to think we lived in Alaska…thank God for that global warming.

Our foundation is growing more and more every day. We are so excited that we made enough money from the Soiree and all the other events that we are going to announce the opening of the grant application process and hope to award our first significant grant by the end of the summer, thanks to all of you for your support.

The foundation has so many other events coming up including a jewelry sale, the annual motorcycle poker run (thanks Trucker) and of course We will soon be having our 2nd annual (third if you combine the one FOR Maria with the ones FROM Maria) 5K run 1mile walk on July 12, 2008. Check that out too . Mark down on your calendars the 12TH!!! Some people have asked me if this is the same event that Marc and Emily Quayle are having. It is not. The Quayle’s are working on forming their own foundation with a different focus. They are having their own run to celebrate Sophie’s birthday. They told us it is to raise money to support St. Jude, 501 C 3 organizations and to fund needy families with dinners and other needs. We support their calling and will help them in any way we can.

Our foundation continues to focus specifically on glioma research and providing support to the families. Our main goal is to find a cure! We are very excited with how much progress we have made toward our goal! We will soon announce the opening of the grant application process and are looking forward to awarding our first significant grant very soon! Thank you to all of you for your love and support. We could not be doing this without you!! Know that by helping us in even the smallest way you have contributed to something very great and meaningful.

That’s all folks! I can’t think of anything else to tell you about except to eat your vegetables!!

Thanks for your continued love and support.

God Bless,

Ed and Megan