Friday, May 05, 2006

Update as of Thursday May 4, 2006

Hello Everyone,

It’s Maria’s third week at St. Jude’s. The boys and I came down a week ago Saturday. The first week was a little rough but we are starting to adjust better this week. We are so thankful to have a nice place to stay where we can all be a family. The people here at St. Francis of Assisi parish are so kind. Thanks to my friend’s aunt, we have really been treated so wonderfully. We are so grateful to her for helping us find a place to stay and we even had a terrific meal dropped off this week from one of the Mom’s in the parish. We still do not cease to be amazed each day at the people who come out of the woodwork to help us. They don’t even know us, but they are right there to lend a hand to us. It’s a humbling experience.

My first day at St. Jude’s with Maria was a very difficult day for me. Maria needed a wheelchair to get around the hospital because she would tire easily and her balance and eyesight were not stable. She was getting worse. It was very noticeable to me after being separated from her for a week. Being in the hospital that first day made my heart sink. I noticed when we got into the hospital Maria’s voice got very low and she became very sad and scared and I hated that. I felt somewhat angry with the place. You look around and see many children who are not well. You think to yourself “what are we doing here? This isn’t where we are supposed to be.” Reality started to really sink in for me. Many of the children are bald. Many wear masks. Maria asked me if she would have to wear one and I did not know what to say. I thought how relieved I was that Maria would lose very little hair. Then it occurred to me that though that was a good thing, it also meant that she has an inoperable tumor.

Ed took me around and showed me the ropes. Of course Ed had already mastered everything, not to mention everyone in the place already knew who he was. As we walked down the halls people would wave to him or stop and talk. If you know Ed this isn’t surprising at all. There was some comfort in knowing that Dad was making sure he was on top of everything for his girl. He is doing an unbelievable job.

Yesterday Maria received a package from her Kindergarten class. She brought it home and went through all of the cards from her fellow classmates and it was so nice to watch her smile and laugh and get chatty about all of her friends that she loves. She misses her classmates and going to school at home. She couldn’t get enough of their cards and we couldn’t get enough of seeing her happy. Thank you Mrs. Ritzler.

Yesterday and today we have started to notice some improvement in Maria and we are very excited. Maria is noticing it too and it makes her happy. They say you enter into the period of “false hope” when your child starts to improve. Our prayers are focused on continued improvement without looking back. One thing you learn is the doctors will say what they will and must, but you must reach beyond that. So many of you are praying for our Maria. This is so important to us and we are so appreciative to all of you. It is everything. We are absolutely moved beyond words at the outpouring we have seen. Ed and I talk about the kindness we receive everyday and we don’t know how we can ever repay everyone. Please know that all of you, too, are in our prayers and thoughts each day. It truly shows the power of God when you witness the outpouring of love towards our little girl. Please continue to pray. Please don’t forget. This is what we are counting on. God is listening.

Love,
Ed and Megan

27 comments:

Anonymous said...

I don't know you, I do live in Westlake with 4 young children. I read your website 2-3 times a day. I want you to know you and your family are in our prayers. Thank you for allowing all of us to be a part of your world! We will keep praying for your beautiful Maria and for the rest of the family to get through this time.

the Van Euwen family said...

Dear McNamara Family

We pray for Maria's miracle constantly. We also pray for strengthen for your family to get through this difficult time. Megan and Aidan - we miss your smiling faces in Ms. Jann's Nature Center class but are glad you are together as a family. Please remember during the difficult times that many people are praying for Maria and God hears our prayers.

Anonymous said...

Ed, Megan and Family,

I have asked many people here in south Florida to pray for beautiful Maria. She has already brought many closer to God and I thank her for that.

You continue to be in our thoughts and prayers.

Love,
Duchocks

Anonymous said...

Hi --
To read your story on your daughter; the courage and strength you have shown to Maria and your sons is beyond words......being a mother of 4 myself, at times we think that we can't handle anymore and God gives us something else to keep us busy, he has given you this cross to bear and I truly believe he is guiding Maria to the cure! We will continue to pray for your family................

Anonymous said...

anonymous said

May God bless you for your strong faith.. you make all of ours stronger. We are all praying and have anxiously awaited the updates on Maria even though we have never met Maria. May the Holy Spirit be with you.... Just Believe.. Just believe. Keep smiling....Hug each other as a couple.. your relationship is important to nuture at this time as well. You have taught all of us to slow down and appreciate each moment, day, and waking hour. Thanks for letting us into your hearts.. Keep on praying and we will too.. a miracle is ahead for Maria.

Anonymous said...

Please remember the power of prayer you have for Maria as her parents.Place your hands over her and pray for God's healing. You may already be doing this! Our prayers are with you for continued strength during this difficult journey.

God Bless

Sheila Kilbane Becker said...

Dear Maria,

I have a little story that has been passed on to me and I share it with my children to remember on days that are hard for them. Mary Grace is in 3rd grade at St. Raphael's and Leah is in the PM kindergarten class. She has Mrs. Ritzler too! Johnny and Jacqueline are almost the same ages as your brothers Eddie and Aidan. Here is our story to share with you....There was a woman who traveled all over the world to take pictures of beautiful things and she loved to share the photos she took with her friends. One day, she decided to go on a cruise near the North Pole. There were very large iceburgs, some as big as a school! As the ship began to pass a big iceberg, she got out her camera, looked through the lense and began to ask God to send her a BIG walrus or have a HUGE whale jump out of the water so she could capture a picture with her camera. She kept praying as she looked through the lense, "Please God send me a whale...." Suddenly, she saw through her lense, three little penguins dressed up in their tuxedos JUST FOR HER....she tooked their picture as they seemed to pose for her. At that moment she realized -Sometimes God doesn't send us "Big" things we ask for, but if we look hard enough, we can find the little things He sends us instead - to remind us that He is present and hears our prayers. The woman always remembers this when she looks at her picture of the little penguins...on the day she prayed for a whale...Maria, I tell my children to look for their little penguins on the rough days, rather than the whale, just when they think God doesn't hear them. We hope you remember to look for your penguins on the days that are not so good for you. Stay strong Little Maria and know that you are loved by so many! Love, The Becker Family - Sheila, John, Mary Grace, Leah, Johnny and Jacqueline

The Nock Girls said...

Hi Maria!!!!!!!!
All of us here and on our street miss you and your brothers very very much. Our neighborhood isn't the same without you! Hopefully soon we will get to see you! We are praying constantly for you.We can't wait to see you when you come home!Say hi to Eddie, Aidan, and Blake for us!
Love,
Kendall, Kennedy, Delaney, and Morgan

Betsy Kaiser said...

Dear McNamara Family-

I was sitting in church today saying prayers for you, specifically to uphold you through all the things that you must endure each day and the weeks to come, when my Bible opened on my lap and I looked down to read this:

"Hear my cry, O God;
listen to my prayer.

From the end of the earth I call to you,
when my heart is overwhelmed:
Lead me to the rock that is higher than I.

For you are my refuge,
a strong tower against the enemy.

Let me abide in your tabernacle forever,
find refuge under the shelter of your wings. Selah.

For you, O God, have heard my vows;
you have given me the heritage of those who fear your name.

Psalm 61:1-5


Reading your updates reveals just how heartbreaking it is for your family. I know how the medical world works, but for you, there can be no "false hope" right now. Hope is what will keep you going along with the love and faith of God. Don't give that up.

Wishing you daily smiles for beautiful Maria!
love, Betsy

Brian Thomas said...

Ed & Megan,

I have just learned of Maria's condition from Rick, and wanted to let you all know that Jennifer and I are praying for you. I know that there is absolutely no sense to be made of this, except that which is written in God's divine plan. May peace be with you and all of your family at this time, and may you all know that you are loved very much!

Sincerely,

Brian & Jennifer Thomas

Anonymous said...

You don't know me, I live in Fairview Park and have 3 kids. My friend Wendy Pallotta first told me about Maria back in April. I read your updates every week, enjoy the pictures of your angelic children and continue to pray for Maria. She is so blessed to have such devoted parents and obviously you are very blessed to have such a beautiful and special little girl. We are praying every day for Maria and your entire family.
Love, Marlene Rydzewski

Anonymous said...

Dear Maria—

I’ve only met you once, shortly after your first birthday. But I’ve known your mother since childhood from that small-town neighborhood that follows its natives everywhere known as West Park.

When I heard you were sick from yet another of those West Park connections, I was heartbroken…naturally. I began praying for you and your family...of course I’d do that.

But what I never expected was the way you have infiltrated every part of my life. If I’m stuck in traffic, running late and feeling frustrated, your smiling face pops in my head and calms me. When my children are making me crazy, I remember you and I’m calm. If a spring allergy makes me want to just lie down and rest, suddenly I think of you and know how trivial my temporary ache or pain really is. Life’s “major” crises have become simply minor inconveniences. My prayers are deeper, my faith stronger, my patience improved. I hold my children tighter. I thank God and appreciate all His gifts more often.

My life is blessed. And I’ve always known this. But it took one little girl named Maria to make me remember this every hour of every day. And from reading all these posts, I’m not alone

If there is anyone in this world who should have no question as to their purpose on this Earth, it’s you. What a light you’ve become in the lives of thousands of people. God has blessed you, Maria. And He has blessed us with you.

Love, Sheila Fenton

Anonymous said...

Maria, I just printed out an enlargement of your picture in your princess dress to frame and put in the front of our church so everyone will know who they are praying for. Maria, you are just precious in our eyes and I am sure you are extremely radiant in God's eyes.

I buy lots of princess stuff for my granddaughter, Perri Simpkins, and I now will get you some more princess stuff together and send it to you.

Your have manifested great love and strength and faith to so many and we are very appreciative. Even in our youth group the other night, a 14 yr old boy, brought you up in prayer. He just loves you sweet little smile.

We still petition God each and every moment of the day for Maria's Miracle. Remember, "All things are possible through he who strengths you."

Thanks so very much for the web site. My day is not complete until I see how your days are going.
God Bless You All, Karen Simpkins

anne kilbane kurz said...

Dear Maria & Family,
I think about you often and read your updates often. I am a pediatric nurse at Rainbow and have taken care of alot of kids with tumors. It is just amazing the strength and Courage you have to get all your tests done. I have 2 kids ages 4 and 20 months. We pray for you every night. Keep strong. Anne Kilbane Kurz

Anonymous said...

Dear Maria,

You do not know me but I was one of your mom's best friends when she was your age. You are as beautiful as your mom. Your mom is a strong, amazing person, she always has been. Reading this blog site I have learned that your whole family is strong and amazing. Your love for each other and your strength will help you get through the tough times.

Your family is in my family's prayers everyday.

Becky Zehe Button

Anonymous said...

Dear McNamara Family,

We are from Dallas and heard about you through Ann Podeszwa. Our daughter goes to school with Ann's little girl Charlotte and my son Cristian goes to school with Alex, just in different grades.

As soon as I read your website, I fell in love with your Maria! She's the most beautiful little girl I have ever seen, I can see her soul through her eyes. Please tell her that my little daughter Nicole (4 yrs. old) said: "Mommy, is she a real princess? She sure looks like one".

We have been praying for your family, and I am sure that the Lord will keep Maria healthy and getting better. Our prayers and thoughts are with you daily and may He grant you strength and courage to keep fighting.

God Bless You,
Connie and Alex Hernandez
Dallas, Texas

liz gilges said...

Dear Ed and Megan,
Hi. You don't know me, but we have a lot in common. Ed's cousin's wife, Anne Smith just told me about your sweet Maria. Be assured of our prayers daily. We KNOW that is what got us through each day. Prayers and faith. Our sweet Elie was diagnosed with a brain tumor at 8 months old. She was given 6 weeks to live. She went to heaven at the age of 10, two years ago. She has five younger siblings...and we all agree, Elie was the best gift God could have given our family. We can not improve upon God's plan. Omnia en bonum. God will give Maria and your family all the grace you need at the moment you need it. (Which seems to be around the clock!) We ask Elie to interceed for all little children suffering with a brain tumor, because she knows what it was like, especially your Maria. We are begging Mother Theresa too.

The Nemcek Family said...

I love the title of your website, it reminds to say a quick prayer each time I visit this website.

I live in Avon, my son goes to preschool in Avon Lake and I learned about your story through a paper sent home with him.

I have forwarded the link to several others who are also praying for your family! It is truly amazing how many people you can reach on the internet in a short period of time. Before long you could have the whole wide world praying for Maria!

Anonymous said...

I don't know you but i received an email asking for prayers for your Maria. Your story has touched my heart and I pray and hope for the miracle you need. God Bless

Anonymous said...

Hi Maria and McNamara family,

My name is Caroline Pallotta and I am Mrs. Pallotta's daughter. I'm in the sixth grade and I want to let you know that Saint Raphael School is doing all that they can to help. Every morning we say the prayer to Mother Teresa over the announcements.

Every day before I went to school, I would stay and talk with my mom. I would see little Maria with a huge smile every day. Seeing her happy made me feel happy.

Every day I think of what you are going through and it makes me stop and think how much I've complained that day. I need to learn to look at the big picture and realize how lucky I am!

I miss seeing Maria's face every morning and I hope she's back for the end of school!

Caroline Pallotta
Saint Raphael student

Anonymous said...

Dear Ed and Megan,
God bless you for your strength and your love. You are wonderful parents to a special little girl and special little boys. You are in my thoughts and prayers. My heart aches for you but rejoyces in the courage you show. Love to you and your family.
Jean Adams Zaber

Anonymous said...

Dear Ed and Megan,
You have such strength....what wonderful parents you are to such a special little girl. My heart aches for all of you yet rejoyces in your courage! You are in my thoughts and prayes.
Love, Jean Adams Zaber

Anonymous said...

God Bless you Maria! The courage and strengh you give your family on a daily basis is amazing, sometimes we forget that we can learn lifes most important lessons from the youngest.
Stay strong and we will continue to pray for you, and your family.

Anonymous said...

Dear Megan and Ed,

Maria and your family are in my thoughts and prayers. It is hard enough to go through this as an adult let alone watching your child.

Take everyday as a gift regardless of how hard they might be. Your strength and your faith will get you through.

Toby

Rachael Kaiser said...

Dear Maria,

i Love You.

from-
Rachael A. Kaiser

Jolliffe said...

Me and my cousins are donaeting money$$$ and we hope that maria feels better soon! I HEARD that Maria did not have tubes sticking out of her so she can go swimming. That made me very happy.

Happy Mothers Day, Mrs. McNamara.

Love,
Jack Jolliffe
age 7

JoAnn Post said...

Hello, Beautiful Maria! I'm so glad you got to go swimming with your brother and daddy yesterday. Today, in Bay, it is cold and rainy. I think of you often and pray for your health. I know many people in my church, Bay United Methodist, pray for you too. Take Care! JoAnn Post