Tuesday, August 29, 2006

Update as of Wednesday August 30, 2006




Hello Everyone,

Where is the time going? Our trip to Hilton Head is over, school has begun and our trip to St. Jude is right around the corner. Anxiety builds as you keep trying to shake it off. Where did summer go?

Our trip to Hilton Head was so precious. It went too fast. Nothing to do was staring us in the face and time with our children was all we had. It had its moments of craziness, but that’s really what makes it all so great. We have to thank our wonderful friends out there and a few other people who wish to remain anonymous for making this vacation possible for us. We love you. You can’t know the depths of what this has meant to us.

School is here and now Maria is gone from 8 until 4. I miss her during the day. The day seems so long. I have to remember that even though I miss her it is what she is so excited about. She loves school and she couldn’t wait to get on the bus and go. Time is passing so quickly. I try to remember “today—just live in today”. It’s difficult sometimes, but I’m trying very hard. Sometimes when you are living in “today” things come your way that quietly remind you that all is not what it once was. Little things in daily life that never caused me to blink an eye before now bring gentle reminders. Maria tells me something funny and I don’t ever want to forget it. I stop and tell myself “don’t forget that Megan”. I watch her as she plays with her cousins and I ask myself “will they always remember this?”. “Will they be ok if something happens to her?”, “will they always remember her if…”. Sometimes it is as if my heart tries to give me a reality check. “Don’t get too comfortable. Remember to pray. Always pray. Maria still has this beastly tumor”. I don’t like to be reminded but it is as if my heart is preparing me not be completely shocked and hurt—just in case. Like I said to Ed in the beginning, “our lives are now forever changed—no matter what the outcome.”

We attended a good friend’s wedding on Saturday and I found myself unexpectedly getting choked up. At first you think it will be great to see all your old friends and get together and have a good time. Then, in the midst of it, you look at the bride and groom and you see what a beautiful thing weddings are and then the reality check hits. Will I be able to be at Maria’s wedding someday? Then the tears come to my eyes. I can’t think about these things. I can’t go down that road.

I started talking with two very good friends at the wedding. We had a conversation about God and faith. My one friend said that if anything happens to Maria she will be done. She will never ever forgive God. I don’t want anyone to feel this way. This isn’t God’s fault, and, like someone commented on earlier on this site, sometimes we can’t see the picture the way God sees it. What I do believe is that God listens to our prayers. We can’t stop praying for Maria. We have to ask God to intercede for her. I believe a miracle can happen. My hope is unshaken. One thing my friends did say is they pray now more than they ever have and that Maria’s situation has changed their lives in such wonderful positive ways. I love to hear this. This is what is so good about all of this, and I just love to hear the good (now if I could just get them to attend Church!). No matter what the outcome, this goodness should continue in the lives of everyone who has been affected by this. The last thing I would want to see is only bad produced from this tragedy. Continuing on with the changes it has made in your life is positive and good and we need that to grow, not end. And, don’t worry, there are great things in store for Maria and I know the world will come to know how special she is. Already God has done so much through her for so many of us.

Ed and I were talking about how beautiful and wonderful Maria is as we so often do, and it struck us that Maria is the glue that keeps this family together so well. She is in the center of our family picture and it occurred to me how appropriate that really is. The boys look up to her so much and Ed and I adore her.

Our Make a Wish trip to Disney is coming up. We don’t have a fierce agenda of things we have to run and do. Our agenda will be simply to enjoy ourselves and make the most of this special time together.

Wednesday, September 6th, 12 noon at St. Raphael’s there will be a rosary for Maria. Please mark your calendars and show up for this. It is only about 20 minutes of your time and we really need your beautiful sincere prayers for our daughter. Please try to show and if you are unable to, please say a rosary or have a quiet prayer for her. We will leave that day for St. Jude’s and her MRI and appointments will be the next day on the 7th. Please keep her in your prayers always, but if you could say extra prayers on those two days that would be so appreciated by us. We just so believe in the power of prayer and what it can do.

Thank you for your continued prayers for Maria.

Love,
Ed and Megan

11 comments:

Anonymous said...

That photo of your family is so beautiful. Each and everyone one of you, are beautifully and wonderfully made. you all look like you are having such a wonderful time.

as i continue to pray for marias full healing, i will also pray that God will use this to lift people up. i know this situation has brought me closer to him, and i dont really even know you personally.

You are wonderful people, you are putting God as the main focus in this situation, thats wonderful. He will pull you through.

My prayers are with you now, and always. I will pray especially hard on the 6th and 7th. I cannot wait to hear the results, and see what God has planned next.

Your family is making a wonderful impact on such a large group of people, and you will be blessed for that. Everything happens for a reason, and God is in total control.

Live in today. Don't worry about tomorrow. Dont worry about a week from now, because all of that doesn't matter. Live your lives.

I hope you have a wonderful time in Disney. Make sure to take lots of pictures and get all the princesses to sign their autograph for maria.

God will take care of you now, and always.

Anonymous said...

What a beautiful picture of the McNamara family on the beach! It is so wonderful you have such giving friends to provide you with the perfect setting away from it all to enjoy your family together. God bless them and you.

I know so many thoughts run constantly through your head and I pray that God continues to bring you strength to enjoy each day, as we all should. Even though we don't know God's plan for any of us, I maintain faith in God's wisdom that he does plan good for us. I continue to pray for Maria's Miracle. I know God is at work all the time for Maria. So many are praying for her that He can't ignore beautiful Maria!

"But we speak the wisdon of God in a mystery, even the hidden wisdom, which God ordained before the world unto our glory." 1 Corinthians 2:7

We will pray extra hard for Maria, and remind others to do the same, next week as you return to St. Jude. Good news will follow!!

Love always,
Betsy

Anne Z said...

HI Maria, I hope you are making the bus every day! I am glad you are back to school. We are continuing to pray for you, and for your family. Now that all the big kids are in school all day, I'll bet mom is extra busy entertaining your brothers. Remind Mom that she is welcome for a cup of tea and conversation if she needs a break. We in the neighborhood will say extra prayers for your safe and successful travel next week. May God Bless You.

Anonymous said...

Ed and Megan, your updates are always so moving for me because obviously it hits so close to home (I'm sitting here at my desk at work with tears in my eyes.) I can so relate to the "live for today" references as living every day with a child with this tumor changes you. It makes you appreciate the little things that they do, but it also unfortunately brings the fear that someday we may only have memories. I pray every day that this will not be the case for my Justin or your Maria, nor any child battling this terrible monster.

It sounds like you all had a great trip to SC and you must be excited to have another great vacation right around the corner. I will spread the word on Justin's website that Maria's MRI is next week to get you some additional prayers. As always, I will pray for Maria and all the children.

With hope,
Jeff Bissett
Justin's dad
dob 2/9/00, dgx DIPG 1/19/06

Anonymous said...

McNamaras,
You are in the prayers of so many people whom you don't even know. I know Ed from childhood and pray daily for Maria's miracle. It can happen!

Anonymous said...

Ed and Megan,
Adoration was very busy last night; busier than usual. I know many prayers were offered for Maria while folks were visiting with Jesus there. You are in our prayers every day.

The Crisafis

Anonymous said...

Dear Ed and Megan,

I am a student at the University of Notre Dame, and although you don't know me I've been following your family's journey because I belong to Saint Raphaels Parish and my mom shared your website with me. Here at school, there is a group of about 30 students who meet at the Grotto every night to pray the rosary together, and Maria is always lifted up in our prayers. Please know that although I won't be able to attend the rosary at Raphaels, I will offer up our prayers for your family and especially Maria in a special way this Wednesday.

In Christ,

Elizabeth Pillari

Anonymous said...

With the 7th just around the corner, i just wanted to let you know that I am praying harder now than ever for maria, and for the MRI results to come back better than ever. Maria is destined to do great things. Beating this cancer being one of them. we all love her and your family, and will pray non stop. what time exactly is the MRI scan happening? If you could let us know so we can pray super super super hard then that would be great.

Anonymous said...

As always you are in our thougths and prayers. We pray every day and night for Maria and will continue with an extra "special" one tonight. God Bless you all! Your family loves you very very much and is always with you. Love, Rosaleen, Brian & Johnny

Anonymous said...

I am wearing my prayers for maria t-shirt from the walk/run today. And everytime i glance down at it, i will be reminded to pray. all my thoughts and prayers will be with you today, and im praying for strength and WONDERFUL news.

maria will beat this cancer. i just know she will. she will beat all odds, and continue to be your little miracle.

god be with you now today, and always forever

Anonymous said...

Living in the moment is probably one of the biggest challenges in life. We consciously have to tell ourselves to stop and appreciate each day for what it is - a gift. A friend sent this poem to me and I wanted to share it with you.

Look to this day
for it is life
the very life of life
In its brief course lie all the realities and truths of existence
the joy of growth
the splendor of action
the glory of power
For yesterday is but a memory
And tomorrow is only a vision
But today well lived
makes every yesterday a memory of happiness
and every tomorrow a vision of hope
Look well, therefore, to this day!
-Ancient Sanskrit poem

Sent positive energy and prayers to Maria yesterday and every day.