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