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Friday, December 28, 2012

Sledding

 We had our first good sledding day.  The weather was perfect, with fresh snow this morning!


 The kids are enjoying snowboarding.

 Gabe always has his tongue out because "it gives good balance"


 Do not let Bruiser fool you- he did not sit like this the whole time!!!


 Bruiser ran after the sled every time it went down the hill.

Bruiser made a new friend. He moved into the neighborhood recently. 


 He is a Goldendoodle just like Bruiser.  They were born within two months of each other!

 Lucky wore Bruiser out!!!

Wednesday, December 26, 2012

Christmas 2012

 We had a wonderful Christmas here!!!

We opened presents.

 We got very excited when they were the presents we hoped for.

 Some of our presents we were not able to figure out-


 This Christmas was all football for Gabe including the Andrew Luck Jersey he wanted.

 The Aaron Rogers jersey was under the tree as well.

 Lazer Tag for your i pod touch


 A big bag of Skylanders Giants

 There were presents that were not on any list but turned out to be favorites

 Opening presents is exhausting

 Church with friends!

 Dressed in their finest to celebrate the birth of Jesus! 






Saturday, December 22, 2012

Winter Play and Concert

Ben sang his heart out at his winter concert. even though he had to wear a scarf "that strangled and itched him"


Ben was in the back row, which is the story of his life. He doesn't seem to mind it  He said,  "I like being solo up there and not all squished in with all those girls."

Ben's language arts class has been studying Shakespeare this semester. The put on several plays to end their unit.

 Grammy would have been proud to see Ben's acting skills. I wish she could have seen him!

The masks were incredible. I found out later that these were to be done at home. Ben's teachers recognized I was not up for that after surgery and did it with him at school. I was so grateful for that kind gesture!

 The recorders-

Tuesday, December 11, 2012

Listen

"To have God speak to the heart is a majestic experience, an experience that people may miss if they monopolized the conversation and never pause to hear God's response." ----Charles Stanely

I know with 100% certainty that God is always with me-he is never silent, even when I fall short and make mistakes, He still loves me and hears my prayers. I also know that it is when I am forced to be still that I am able to hear Him very clearly. I am so grateful that He allows me grace and forgives me even when I have let Him fall into the corners of my life instead of being the center of it, even when I have chosen not to listen, He still speaks. For me, it seems that sometimes it takes an event, a person or even a circumstance to open my eyes and focus again and to open my heart so I can hear him- to LISTEN once again.
I have just emerged from some pretty dark days. Days I did not want to face- difficult both physically and emotionally and days that not only affected me but my entire family as well.  I have experienced God's grace and healing so profoundly that I feel that THIS story is the most important part of my story so far. A story worth sharing.
I have talked so much over the last few months about numbers and medical terminology about remissions, failures, procedures and surgeries but what I have not talked about was that there was a time during this whole process when I had to stop listening to all of the medical advice and to what everyone thought I should be doing or how I should be responding and turn everything over to God-knowing that God could do for me what no doctor could and also to realize that even though my medical outcome is not yet what I expected or wanted, the outcome that matters is just how I want it to be. I am closer to God and I have the knowledge that God is always with me if I just open my heart.
I have seen so many times over these last three months how God shows himself in my life.
So today, instead of talking about my numbers and using big words that no one really understands the meanings of, or medical outcomes that do not directly effect you, I want to tell you a better story and one that you to can understand and also be a direct part of. One of grace, humility, faith and my belief that NOTHING happens by chance. NOTHING is accidental or incidental. EVERYTHING is planned by God and God has the perfect plan. The perfect story for you. I am just one person, one story.
When you are dealing with a difficult situation in your life, which for me has been medical, the experiences from that situation stay with you and become part of your story. It is during those difficult times in your life that God brings you closer to Him- that He opens your heart so you can hear Him. I believe that God opened my heart so He could lead me in the right direction- to Him. God led me and reached out to me in so many different ways over the last three months and not a  single one of them was accidental or incidental. Some of them shouted out to me while others were just whispers or gentle nudges. I do believe every single one of them happened for a reason.
God placed so many people into my life, people who I already have relationships with, who showed  me how we should treat each other and what it means to serve others.. I believe God sends help in hearts that give without thinking that help without asking. During the last three months, I have experienced those people who God placed directly in my path who, big or small, gave to me with no expectations. Coffees, cards, flowers, phone calls, food, caring for my children, my house cleaned, my carpets cleaned, encouraging messages, thoughtful notes. I know every single good deed and intention. Every single good word was a direct result of God's love for me.
God also puts people in our lives whom we have never met. Who do not know our hearts or our sufferings but still choose to go out of their way to be a part of your story. What these people do is unconditional and selfless and again, a direct result of God's love for me. God placed Kat, my sweet nurse who cared for me during my worst times after surgery. Kat came when I buzzed (A lot!), listened while I complained, wiped away tears, assured me with words. Always with a smile, always with a kind heart. I know God was guiding Kat. He hand picked her just for me. There were many nurses throughout my stay, none with Kat's heart, no other with her compassion.  Kat was the only nurse who worked two full shifts during my stay, the nurse who was with me the most, the answer to my prayer to ease my anxiety.
Of course, God was nearby while a great team of doctors worked on me both pre op and post op but God also knew that even in the best medical hands, that I would be scared and in pain that first night so he sent Dr. Baboo a neurosurgeon who visited me on a number of occasions, far too many to be considered typical- who listened, who reassured me through a very difficult night and one who reminded ME that she had been with me during this same time in 2008. God's plan- I am sure.
God also sent a Chaplin to my room at the exact moment when I needed her the most- while Kevin, the boys and our friend Jim were visiting. when the helicopter was landing outside and the kids were yelling, when Kevin was dealing with the emotions of knowing his dad was in his final days, when they were drawing blood and changing IV's, when the whole room was tense and I wanted everyone to leave and I told them so- but she stayed and we prayed together. Not only did she provide the calm  I needed at the exact moment I needed it,  she also prayed that God would reassure me he was by my side.
 God did just that one day later when He sent three teenage boys into the lobby of the hospital and who, as they approached my wheelchair, were facing some tense looks from others around us. When they looked at me and asked if they could pray for me, I, of course knew, that these teenage boys were a direct answer to prayers of reassurance. As the 3 strangers placed their hands on my shoulders and prayed over me, as my 11 year old watched and got to experience God's love flowing through me, I had an absolute peace and knowledge that God loves me.  3 complete strangers, 3 teenage boys at 6 PM on a Saturday night in the lobby of a hospital it was  not accidental or incidental but planned.

God also sends help and shows us his presence by placing us exactly where we are meant to be. I felt this for the first time in 2007 when I was standing in front of the statue of the Infant Jesus of Prague in a Monastery in the middle of Sao Paolo, Brazil. When I prayed for healing and was put into a surgical remission one month later. Now, the Infant Jesus of Prague intervened for me once again as a prayed a novena to him again asking for relief, asking for my doctors to listen and for my life to once again be one I can feel good about living. This is why I know, that even though the doctors are saying I m not cured, that I might not even go into remission, I know I still have hope for it to happen because I have God on my side and because I know there is a whole lot more to my story.

So- I am so glad you could all be a part of this time in my life. Today I must keep going forward, to enjoy my perfectly imperfect life,  thankful for all of my blessings and my renewed faith. Through all of this I have learned healing is a gift, it is not a right. Healing can only happen when you open your heart. I am certain that God interceded with mercy and grace. I am also certain that God has a perfect plan for my life, something I have not yet figured out but one I trust is perfect.
If you open your heart, you too will be able to see God in your life. You will be able to recognize and appreciate the people who you cross paths with. You will be able to see that although your life may not seem perfect now, you are a part of a perfect plan- God's plan.



 



Thursday, November 29, 2012

Winning Isn't Everything

I lied.  I said my next post would only happen when I could announce I was victorious- that I had won my race.  I think winning is overrated. Winning isn't everything.

In the last two weeks I have learned that victory doesn't always mean winning. Victory is not defined by whether you cross a finish line.  Victory is achieved by simply moving forward the best way you can. Sometimes it is the lessons learned along the path, the small victories that change you and make you stronger. I am still winning my race, it might be taking longer than expected but I am still winning. Today I feel like I can celebrate and share some of my small victories.
I can sneeze and blow my nose again. If you think this is not a big deal try NOT doing it for 2 weeks and get back to me.
I can drive.
I can be in the same room with food and not have to take anti nausea medicine.
I can sleep on my side and not feel like my brains have slipped into my throat.

Medically speaking, we know this surgery did not CURE me-good old zero never came BUT we found out today, my numbers are dropping and dropping is GOOD-zero is overrated !
My ACTH level is non existent-not there-gone. half of my pituitary gone, tumor gone, ACTH gone.
Gone is GOOD.
Before surgery I tried to prepare myself. I thought I could remain positive but what I found was that I was ill equipped to deal with it. Today I feel like I am having more good days and less bad and GOOD is GOOD!

The last 2 weeks have been the hardest of my life so far- At one point during the last two weeks, I even spoke the words, "I do not want to live anymore." and I wasn't being dramatic-I was being serious. I have thrown myself some awesome pity parties in the last 2 weeks, to bad no one could come, they were  Oscar worthy performances.  Speaking of Oscars, Kevin deserves the Oscar for best supporting actor in a horror film. He has been a rock- caring for our children, our home, our finances all while helping his sick wife AND grieving the loss of his father. He also somehow managed to cook a 16 pound turkey with all of the fixings AND put the Christmas decorations up- THE OSCAR GOES TO KEVIN!!!!! My rock, and the love of my life!

So today I would like to announce my race is moving on, going forward. Cure or no cure. Late remission or not. I must move forward knowing I have God's strength on my side. Knowing that having Him on my team is what matters anyway. No more talk in medical terminology, no talk of failures, remissions or numbers. I am choosing today to focus on the story that really matters, the story of the race we all want to be a part of. The story of grace, humility and faith.
The story I will tell soon...

Saturday, November 3, 2012

Ben's Party Day

We celebrated Ben's 11th birthday with his friends Friday night.



 A perfect group of kids!
We feel so blessed Ben has such a great group of friends.


Just Dance 4- I had a great time watching them dance.  Wondering where Ben is? He was on the floor break dancing

Pappy gave Ben this Air Moon Jack. It is the coolest pogo stick around. Pappy is our neighbor and has been a great friend to Ben. We love it when he just shows up when we need him the most!!! Pappy and Ben can just sit and talk for hours. We know they are friends for life!

Jamie gave Ben a Iron Man Lego and this book- the third in the continuation of the  Percy Jackson series. Jamie is a great friend to Ben, someone he can count on. They share a lot of interests and Jamie doesn't mind if Ben talks about them- A LOT! Jamie is patient and kind.

 Riley gave Ben a Lego Advent calendar and a gift card to Barnes and Noble. Riley is  such a wonderful girl. She was here with 5 boys and it did not bother her in the least. Riley is such a blessing to Ben because she is patient and understanding. Riley is very quiet but she is also very strong. She has a solid value and belief system, and does not let anyone else influence her decisions.


Rylan gave Ben a whole bag of Notre Dame Football things including a football, a bag, a red ND hat, a ND jersey, and ND football gloves-really cool, one of a kind gloves.  A year ago I could not have imagined this being a present Ben would receive but it is because of Rylan that Ben has truly started to enjoy football. For many years on the playground, Ben was told he couldn't play. No one would choose him for their team. It wasn't until Rylan stood up and said, I want Ben and we will play on our own team. He actually threw the ball to Ben, Ben caught it and that was all it took for our child, who has been told he couldn't to believe he could. Rylan believes in Ben and that is awesome!!

 Dominic gave Ben a gift card.  Dominic and Ben have been friends for a long time. Dominic is the most "go with the flow" child I know.  He is truly happy doing whatever. Ben can always count on Dominic to be there for him. They love hanging out together and enjoy a lot of  the same things. We love that Dominic teaches Ben to be flexible.

 Justin gave Ben some Halo guys and Halo Legos. Justin is a very kind boy. Justin was new last year at Ben's school and I love that he gets along with everyone. Justin is one of the friends at school  Ben knows he can count on.

Friday, November 2, 2012

Halloween 2012



I never thought Gabe would pick a pumpkin. He had so many he wanted to take home and had a very hard time choosing!


The perfect pumpkin




The kids abandoned Kevin to play football


Ben's Pumpkin

Gabe and Kevin ready to trick or treat!

Off they go!

 Gabe was able to go with his friend Sam, one last time. Sam's family moved the very next day to Washington.