Sunday, August 24, 2008


Dear Jesus, help me to spread Your fragrance everywhere I go. Flood my soul with Your spirit and love. Penetrate and possess my whole being so utterly that all my life may only be a radiance of Thee. Shine through me and be so in me that every soul I come in contact with may feel Thy presence in my soul. Let them look up and see no longer me but only Jesus. Stay with me and then I shall begin to shine as You shine, so to shine as to be a light to others. --Mother Teresa

We love you Maria.

Mom and Dad, Eddie, Aidan and Blake

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

Sunday, February 10, 2008

Happy February

Aidan, Maria and Eddie - Thanksgiving 2006
Hard to believe this was but a year ago. Maria was doing so well.
That tumor came back and we just couldn't stop it.
We were so helpless. I ask every day--
What would have stopped it? If I had only known.
I would have done anything to stop it.
That is why we have to fight for those now and those yet to come.

Hello Everyone,

I wrote the following post on Thanksgiving Day. Due to technical difficulties, I never posted it, but wanted you to know…

Happy Thanksgiving.

Today we think of all of you. We think of the kindness that has been shown to our family and how grateful we are to you. What an impact your kindness has made in our lives! We thank you and we thank God for you.

Last Wednesday I was asked to speak to a group of Girl Scouts at their annual Thanks and Praise Ceremony. I attended the ceremony last year when Maria read a line at the podium of what her troop was thankful for. Her troop was there again this year. Only, of course, Maria was not. This year the girls decided to collect and donate toys to St. Jude’s in honor of what they did to help Maria. What a beautiful thing to do. A troop leader asked if I could talk to the girls a little about St. Jude’s. At first, I was a bit frightened. I did not want to stand up in front of the girls and risk the chance of choking. I thought that perhaps it would be best if I wrote something that could be read to them by someone else. As I sat down to write something, it slowly came to me that it would be best for me to speak to them. I didn’t think too hard about anything because I felt guided, and so I just went where I was lead. There was a little nervousness when I got there. Seeing all of the girls brought back memories and that is hard. I looked at the girls from Maria’s class and they are getting bigger and time is moving on without my girl. Maria was with me though. I could feel her presence. I felt she wanted me to do this and so I knew she would see me through it, and she did.

Though it was the girls’ thanks and praise ceremony, I felt very thankful to all of them. I felt thankful that they are keeping Maria’s memory alive. I felt thankful for their grace in how they have handled the death of their friend. I felt thankful for their parents who have had to see them through the death of a friend. It is not easy to walk a child through something like this, but I know that each parent had to. It was obvious to me that the parents, too, had done it with grace because I saw some of the greatest kids I know sitting there in that Church.

As I looked around at the girls my memory recalled a moment after Jesus Day. We had just finished sharing lunch out in the yard at St. Raphael’s with Maria and it was time for the students to head back in to class to finish up the day. I walked Maria into the school and many students were walking up and down the hallway. I was a bit worried because I knew that with Maria’s eyesight and balance it would be difficult for her to guide herself down the hallway and back to class. Just when I decided I would take her back a good friend of Maria’s walked into the building and instinctively took her hand and said “C’mon Maria, I’ll walk with you back to class”. Maria kissed me goodbye and I watched her friend carefully lead her down the hallway. There was no fanfare. It came as second nature to this little girl. She knew her friend needed help and she helped her. She did not make a big deal out of it, and Maria, who otherwise would never want any attention or help, knew she needed her friend’s help and accepted it. As I watched them walk down the hallway tears came to my eyes, partly because of the affirmation that Maria was slowly deteriorating, but mostly because of the feeling it gave me to see such a pure act of kindness shown toward my daughter. Though it may not seem like much to some, acts like that meant everything to me. This is the way Maria’s classmates are. They loved Maria and they looked out for her. It came naturally to them and because of that there was nothing that made Maria feel self-conscious. It didn’t stop at her fellow students either. Teachers, aides, children in other grades—many people reached out to her and loved her without making her feel different. I thank all of you. It did not go unnoticed by me. It meant a great deal to me that you would care for my daughter the way you did.

The Saint Raphael community has been like one I could never have imagined. Grace, kindness and compassion are the words that come to my mind. You live your faith. I am extremely inspired by the many generous acts I have witnessed and received and I want to pass it on.

Outside the gym door at St. Raphael there is a picture of Mother Teresa and beneath it a quote of her’s that says “unless life is lived for others, it is not worthwhile”. The St. Raphael community understands this well. Ed and I feel blessed to call this community Family. God is at work there. Thanks to the example of this community, I am humbled, and I am learning that when you immerse yourself in a life that is lived for others that is where God lives and that is the only place I want to be. I sure have a long way to go...

As for Maria—

Going forward there are many things we think of that we want to share with you about her. We will do this in time. The journey continues and this site has been a source of comfort to our family--a place we can go to share her story and honor her memory. Thank you for sharing it with us.

Until the next post, a package came yesterday from Pamela in Cincinnati. We opened it today on Thanksgiving. Not a coincidence. You know we don’t believe in them. Thank you Pamela. I hope you don’t mind if we share “Visitor From Heaven” with everyone because we think it captures beautifully what is in our hearts.
Visitor From Heaven - Share on Ovi

Visitor From Heaven
Music and lyrics by Twila Paris

Vocal by Pamela Pretot
Piano accompaniment by Craig White

A visitor from heaven,
If only for a while,
A gift of love to be returned,
We think of you and smile.

A visitor from heaven,
Accompanied by grace,
Reminding of a better love
And of a better place.

With aching hearts and empty arms,
We send you with a name.
It hurts so much to let you go
But we’re so glad you came,
We’re so glad you came.

A visitor from heaven,
If only for a day.
We thank Him for the time He gave
And now it’s time to say:

We trust you to the Father’s love
And to His tender care,
Held in the everlasting arms
And we’re so glad you’re there.

With breaking hearts and open hands,
We send you with a name.
It hurts so much to let you go
But we’re so glad you came,
We’re so glad you came.

We wish all of you and your families a very Happy Thanksgiving.

God bless,
Ed and Megan

Friday, January 11, 2008

Happy Birthday Maria! - January 11, 2008

Happy Birthday sweet Maria,

On your special day I think of you with so much love and gratitude in my heart.

You came into this world so quietly. It struck me that you barely even cried when you were born. I thought something must be wrong, but then you looked at me wide-awake and so peacefully. You had that quiet peace about you right from the very beginning. Maybe because you knew I was not well and did not want to cause a fuss. You always thought of me first. They rushed me off to the O.R. and you stayed very quietly with your Daddy who developed a special place in his heart for you right from that very moment.

You always radiated love Maria. Before you became sick there was a timid and sweet, happy-go-lucky innocence about you. You were excited about everything and genuinely loved life. You were quite the practical joker, yet you were gentle, kind and thoughtful. After you became sick your wisdom grew and much of your happy innocence was taken away from you. I hated to see this. Yet with all you had to endure the love that you radiated to others seemed to grow stronger and stronger. In your most private, difficult and painful moments you reached out to me not to be comforted, but to comfort! Though I kept my face strong and smiling for you, you saw beyond it and you did not want me to worry. I ached deeply. I could not help you. I could not save your life. You put your hand on my cheek and told me that you loved me. In your pain you did not think of yourself. You never wanted me to suffer but you suffered so much. It occurred to me that until you, I never really grasped the meaning of true love. You showed me love in its rawest form. Pure love. Nothing attached to it. A love like that can never be conquered by death and will live forever. You loved me like Christ would. Because of that I am able to understand the beginning of the depths of the love Christ must have for us. Through you I received a glimpse of Christ’s pain and suffering but also His unconditional love. I want to thank you Maria! I see now what I can’t imagine ever having not seen! It is so clear to me that at the end of your life Christ took hold of you and you became one with Him. Just as Father Tim said, He consumed your soul, Maria, and I was blessed to be a witness.

Hold onto me Maria. Don’t let me slip and fall. I want to get to where you are and I know that my life must change. There is a lot of work to do and I am already almost 39. Only through your example have I been able to understand the urgency of how important it is to change my life and live it for Christ. Now I see that this life is not about me, but what I can do for others. It is entirely about LOVE. God has taught me that valuable lesson through you. I pray that I never lose site of the meaning. That I don’t ever fail to remember the lessons I have learned. One day I know God will ask me “What have you done with what you have been given?” I long to hear Him say the words that I know you have already heard: “Well done, my good and faithful servant.”

For your birthday I can not give you any greater gift than what you have already been given--the gift of eternal life. Your life on earth has ended, but your mission, I believe, has just begun. I am here for you Maria, to help you in any way I can. I pray others will too.

Your Daddy, Eddie, Aidan, Blake and I love you and miss you so much Maria. You will always be our glue. We think of you every day. We are so proud of you. We know you will enjoy your first birthday in Heaven with all of the other beautiful children who have walked in your shoes. No more pain. No more suffering. Only love.
Mom and Dad