Wednesday, June 28, 2006

Update as of Wednesday June 28, 2006


Hello Everyone,

Today we leave for St. Jude. As most of you probably know, Maria needs to go back to St. Jude on a regular basis. Tomorrow we are getting an MRI done. We aren't expecting any great news since the tumor is expected to not shrink and maybe even grow a little, but we are hopeful.

Maria has been playing like a regular kid. She goes swimming with her friends; she runs in the yard, she even gets mad at her brothers. What a wonderful feeling that is...normal.

We realize that we will never see the "normal" that we once had. From now on, our "normal" will be different, and that is OK.

The toughest part about our new "normal" is not knowing how long it will last. Sometimes we feel we are sitting on an atomic bomb waiting to go off at any moment. We force ourselves to ignore the bomb and continue on with our lives as if nothing has changed.

So, we talk about who Maria's teacher might be next year, what classes she is going to take, if she is going to play soccer or not.....even the boys are talking about school. We are planning a trip to Hilton Head at the end of August and of course the all important Disney trip at the end of September. Too hot and too crowded to go any earlier.

So, that is our new normal. It sounds great and we’ll take it.

As for Maria's health, she feels good and her blood counts seem OK, but we will know a better once we see all our old friends at St. Jude.

One quick story that reminded us that our normal is now different. Maria came to us one day and said that she was told by one of her friends that she needed to be careful on the neighbor’s trampoline because of her tumor. She told us that she told her friend that she didn't have to be careful because her tumor was gone......"It is gone isn't it mommy?" That was a difficult moment. Mommy had to explain that the tumor wasn't gone "yet" but we are praying that it will go away soon. So much for normal.

It is hard to sit on this bomb having no idea if or when it is going to explode. As we were telling some guests just yesterday, we are perfectly content to live in our world not thinking about or just ignoring that there is a bomb. What choice do we really have?

Well, we have to go catch a plane now. Hello Memphis!

One last item...please don't forgot to pray for Maria....Statistically, that is all we have. Even if you don't normally pray, please pray tomorrow around 10 am. That is when Maria will be getting her MRI, which is the hardest part for Maria because they put her to sleep and it is frightening for her. Pray at your desk, in the car, say the rosary, anything. We believe that every little prayer helps....thanks

God Bless
Ed and Megan

12 comments:

Anonymous said...

God is taking you in the palm of his hand, he is guiding you every step of the way! I believe that Maria may have a little bit of insight on what is happening with the tumor, and she may be right, It is going away........God Bless!

Anonymous said...

Ed and Megan,

I have been trying to put my thoughts into words since I read Ed's Father's Day update. What a gift it is to know how our little girls can soften our hearts and wrap us around their fingers. I check out Maria's website just about every day and I search for the words that will ease your pain and in some ways my own. At this point, I have shed too many tears to count and my heart is heavy as you describe your new definition of "Normal" life. A day does not pass that I don't pray, to our God, for Maria's miracle and I will say a special prayer for tomorrow's MRI. The Simpkins' family loves you guys very much and is sending your family an email group hug.

Much Love,
Jeff, Lori, Perri, and Nathan

lworley416 said...

I know that sometimes life can get really overwhelming and it all seems so dark. The Lord is still there to light your way! And I'm still here praying!!!!!!!!
2Sam 22:29 For thou art my lamp, O LORD: and the LORD will lighten my darkness.

Diane said...

May God surround you with His peace(Phil 4:7),fill you with His hope (Rom 15:13) and may Jesus walk with you every step of the way.

Praying for you daily

Diane

Kathleen Goldbach said...

Hi Megan and Ed.
I read your updates weekly so that I can stay in touch.
I would like to do something more. Some ideas might be, bring dinner over to your house. Whatever you would like. Take all of you out for dinner or lunch. Sit with the children while you both go out. Anything you can think of. Michelle, Jason, Natalie and I have sent donations to the NCB acct, but that isn't enough. What else would you allow me to do for you?
All my love and prayers
Aunt Kathy

Anonymous said...

Hello to you all. All the words in the world could not express my sympanthy for you have gone through and are going through. I can't imagine even a second of it. I pray for your family daily and hope that you receive a miracle. My daughter & I call her "Little Maria" We talk about her as if she was part of our family and discuss updates, etc. We get excited just as we would our own family members. We have cried many tears for her and we have smiled many smiles for her. She is sure an angel. May God be with you always and watch over you. I will also be praying tomorrow at 10am. Love, The Scalise family. "kisses & hugs to Little Maria"

Anonymous said...

There isn't a day that goes by that I don't think of Maria and what you are all going through. Please know that you are all in our daily thoughts and prayers!

Anonymous said...

We prayed from 10 to 11. Hope St. Jude was on time with the MRI to coincide with all the prayers flooding the Heavens!!

We love you Maria! Be brave and stay strong.

"When I am afraid, I will put my trust in you."
Psalm 56:3

Love & Prayers,
Betsy

Anonymous said...

Ed and Megan,
You do not know me but this site was sent to me from my sister.I belong to a group at Ascension Church in Kettering Ohio you can add 22 more people praying for Maria.

Blessings,
Diane

Anonymous said...

Maria- you and your family will remain in my prayers. May the Lord watch over you and send his angels to minister to you.

Peace be with you,

Lindsay
Ascension Parish
Kettering, OH

Anonymous said...

Hi! For anyone who wanted to see
the June 29th piece on Channel 3,
it actually will be shown at
the 11pm broadcast on July 5th
instead.

Continued prayers for more miracles
and also prayers of gratitude for
all the good we have found in travelling on this journey together. Peace be with you...
The Martinez family of Avon Lake

Anonymous said...

Dear Edward and Megan:

You are not in this alone. Jesus promised that He would "never leave you nor forsake you." Dt. 31:6. You can give your "bomb" to Him. He can carry it. Isaiah 30:18, "Yet the Lord longs to be gracious to you, He rises to show you compassion."

I pray for all of you daily "with all kinds of prayers and requests." Eph. 6:18

Love,

Aunt Pam