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


Anonymous said...

Ed and Megan,
Please know that your family and Maria are not forgotten. I check your website frequently to see if I can catch a quick update on how you are doing. I could never pretend to imagine how difficult even the smallest things can be. But if it is any consolation just know that I think about your family and pray for your family every single night.
What you are doing with Maria's legacy through your Foundation is inspiring.
God Bless you.

Anonymous said...

Megan and Ed,
You should be very proud of all you have accomplished with the foundation in such a short time! I believe you will find a cure! I know both of you won't stop till you do. I'm sure Maria is in heaven greeting all the angels who are now free of this terrible monster. She is probably making sure they all see and know that HER Mom and Dad are going to find a cure.

We went to visit Maria today. The boys wanted to see if she got a "stone" yet. When they saw there wasn't one yet, they said, it is probably going to take a long time to make it because it should be REALLY big and pretty. (They think the bigger it is then everyone will know where to come and visit Maria) As always the arguing between them started... I think it should be as big as the van. No, it's going to be as big as a house. No, it's going to be as big as hotel...and as you can imagine it went on. Then they stopped, as we prayed for Maria. Only to hear them start up again. But this time the argument was, it should be as PRETTY as Maria was.....

Anonymous said...

Thanks Eddy for sharing!

Anonymous said...

Dear McNamara -
Thank you for continuing to share your story. Thank you for not giving up in the DIPG battle.

We owe it to all the DIPG warriors/angels to fight the battle against this cancer.

It is unaccepatable that treatment options are so limited. It is unacceptable that the prognosis is so poor with this type of cancer.

We need to fight for these brave kids knowing that if a cure for dipg is found that a cure for all cancers may be found.

May God continue to walk with you on your journey. May Maria's sweet love be with you forever.

God Bless you.

Anonymous said...

Just listened to Visitor from Heaven. What an amazing song.
Will pray for your family.

Anonymous said...

Thanks so much for your post! It really touched my heart to hear your story about walking Maria to the bus! Dad's are suppose to sound silly when they sing and it sounds to me like you had put a large smile on Maria's face! I can only imagine what a father's pain, your pain must feel like. Every time we saw you over the last few years we were reminded of how your gut must of been feeling. A feeling none of us could really know.You didn't have to say anything. It was evident in every blink you made! It was also evident that you did every thing in your know how to fight Maria's battle for her!

As for July 12th, it will be an annual event. I will never forget that day and when we heard the news of Maria's passing. Our knees bukcled, many of us held each other and cried. We also picked up our heads and said from this point forward, we have a mission and that is to support you and Megan and every family going through this. Maria put her stamp on the event and she has inspired us all to give back by supporting the run. Her courage, love and above all faith drives so many of us to do the right thing. With that said, you and Megan have done so much for so many of us! I feel privledged to call you our friends.

How exciting about the Grant!

The Gordons

Anonymous said...

Dear Mr. McNamara,

I teared up reading your post. I know my husband would be very sad to lose our daughter as well. And I thought I was having a lousy day. I thank you for giving me perspective, and for putting a smile on my face. I will think of you and your family when I sit down to dinner tonight and pretend I love my vegetables.

God bless you.

Anonymous said...

As always Edward & Megan, we continue to think of you every day.

Anonymous said...

Dear McNamaras- I just wanted to tell you that we continue to pray for your family everynight. You are all so couragious- and to continue to help people while you are still thick in the midst of your own grief is truly selfless. Thanks for sharing Maria with us, she's quite the little hero. I hope God continues to bless your family with grace and love.

Anonymous said...

Dear Megan and Eddy:

Maria remains in our thoughts and prayers every day. Thanks for keeping us posted on your family. We love you.

The Londino Family

Anonymous said...

So glad to see your update. We think of Maria all the time and pray that you guys are doing okay. God Bless you and everything that you do for these children!!
Yours in Christ,
Brenda and Nathan Lucius

Anonymous said...

Thank you for the update, Ed. You and your wife, Megan, were sure there for Marc and Emily when they needed you. God bless you for all the good you are doing others. Maria must be so proud of where she comes from. Lots of love from Sophie's Great Aunt Lynne

Anonymous said...

As the children of St Raphael prepare for First Communion thoughts of Maria are always present. We pray for her and your familiy. And we pray that she may look down on her friends with grace and peace in her heart. She is missed very much.

Anonymous said...

Just wanted to let you know that I am thinking of you today.

Anonymous said...

thinking about you and praying that God would hold you all very close today and always.

Anonymous said...

McNamara Family~
You have so much knowledge to share with dipg families. Please check out:

May God watch over you

Anonymous said...

that was incredible
the prayers are still being said
for you and Megan and the boys
Love from the Californians
Aunt Lil

William L said...

Ed and Megan
I was informed of your devastating loss some months ago and realised at the time that I did not know how to get in touch. I was also afraid to get in touch, what would I say. As I prepared to bring one of my own kids to school this morning, you came to mind again and I wondered how you and your family are coping. I realised I had to make some effort to say something. I think of you a lot in these difficult times and wanted to wish strength and comfort to you all. I am sure Maria herself is helping to guide you. Through her you have reminded me and everyone else who visits your site to never take anything for granted. You are in many peoples thoughts and prayers on this side of the Atlantic and will continue to be. Take care.
William Lyons, Co. Cork, Ireland.

Anonymous said...

Ed, Megan & family,
I just came across an article in the July/Aug edition of Yankee Magazine. A farm in CT sells Sunflowers in July for $5 a bunch & donates 100% of the procedes to Make-A-Wish. I immediately thought of Maria. I didn't know her but, I think she'd approve. My family will be making the trip this year. Here is the link. Be well & God bless.

Anonymous said...

Dear Ed and Megan, I have a gift I made for Maria's 1st Anniversay in Heaven. Please call me and I will drop it off at your home sometime this week when it's convenient for you. It is large and I would prefer to bring it to you rather than leave it at the cemetary. My number is in the phone book. Thank you and God bless you, Debbie and Geoff Goodfellow

Anonymous said...

Many, many thoughts and prayers for you as we near the 1st annniversary. I am so sad I will miss the walk but will be thinking of you.

Anonymous said...

Thinking of you and praying for each of you on this difficult anniversary.

Anonymous said...

I have a friend that knew Maria. I wrote this poem for her on the one year since Maria had passed. I hope this touches you as it did my friend. I wish I could have met Maria..

Sweet Maria
by Briana Hamilton

The angels were flying,
When he took you away.
Although we were crying,
You were there to stay.
To fly through the heavens,
On that warm, sunny day.

Your laughter still lingers,
In our thoughts everyday.
Your smile imprinted,
And won't go away.
Your sparkling eyes,
In our minds will stay.

God sent us a gift,
To grace us with his light.
He lent us his angel,
To guide us to do right.
Sweet Maria, our angel,
Will always shine bright.