Thursday, August 26, 2010

Day 2: Part II

One of the reasons I fell in love with my husband in the first place is because he strives to be a man after God's own heart. I had never met anyone like that, prior to meeting Todd, and I have met very few since.

Todd and I, like all married couples, have had our ups and downs. But never did I imagine that my love, respect, and pride for my husband would grow to its greatest heights during our lowest of points in life. But that is what God does...He uses the awfulness of the human condition to strengthen our resolve, build our character, and shape our hearts.

How many of us when we are saying our vows..."In sickness and health..." ever imagine that sickness could inflict our children, beyond the occasional cold, ear ache, and stomach flu. I know we didn't! It is unnatural! Pure and simple....yet here we are.

I can still feel my husband's strong hand wrapped around mine as we sat with Dr. Brennan and Dr. Wheeler, a mere 200 feet from our dying baby. We wept. We held each other. We prayed. We ached.

As my husband proceeded to go spend time with our sweetness in the PICU, Dr. Brennan and I put the plan into motion. We each made calls, gathered our stuff, and within the hour were ready to head to Cedars Sinai. I asked my father-in-law Gordy(the anchor of the Fredeen family) to come to Santa Barbara immediately because his oldest son needed him in an incomprehensible way. I also called our friend John Becchio, the dearest of friends, and asked him to come to the lobby and to share his strength with my husband as I made my way to Los Angeles with my angel and Dr. Brennan. The team at Cottage was wonderful. They understood the depth of our grief and offered unconditional support.

Prior to our departure, our friends Susan and John arrived. I have always loved our friends, each and everyone of them. But I find that the love I have for our friends has changed. I don't really know how to explain this change, but the genuine love I had has transformed into something much deeper, immeasurable. The only word that can begin to describe it is "agape". When John and Susan wrapped their arms around me, I actually felt relief. I remember thinking to myself..."What a weird thing to feel!" Now I recognize that I felt relief because we were no longer alone. That hug reminded that we were loved by many and that in our hour of greatest need we hand hundreds of hands holdings us up.

Before going back to the PICU to prepare our daughter for the fight of her life, I wrapped myself around my husband's neck. His kiss simultaneously shared his love and heartbreak for our family. My husband is a well-built man, with broad shoulders and very strong arms. He radiates heat and our children love to use him as a jungle gym during the day and then fight over who gets to lie on his "belly-bed" at night. I have never felt so small and helpless as when we hugged that very moment. We had made the painful decision of having him stay in Santa Barbara with our boy Teddy, while I went to Cedars with Nina. As soon as we heard about Nina's diagnosis, we recognized that this would be a battle for both of our children. For Nina, we needed a miracle. For Teddy, we needed to protect his heart and spirit. We knew that we needed to maintain some sense of normalcy for him while we tried to secure the best treatment for our honey girl. Oh we love him!!! I don't know what made us cry more, the catastrophe growing in Nina's brain or the grief this journey would cause our precious son!!! There are no words!!

At precisely 1:30 pm, we loaded the queen of my heart into a wheel chair and made our way out to the hospital entrance, where Dr. Brennan was waiting for us. I recall not hesitating for a second when he had originally offered to drive Nina and me to Cedars Sinai. I had never expected him to do such an incredibly generous and loving act, but when he did my heart practically leapt for joy! It was the first time in 24 hours where I had experienced true, tangible hope. Who does such a thing??? What doctor has ever offered to momentarily leave the comfort of his office and family and take his dying patient and mother through ridiculous traffic and heartache??? I have never heard of such a thing!!! Only a great man whose heart is touched by God is capable of such generosity! As the nurses escorted me to Dr. B's car, one of them took me by the hand and whispered, "In all my 25 years of being a nurse here I have never heard or seen a doctor do such a thing! He is a saint!" She was right...Dr. B is a saint, sent to us as a beacon of light when our world had collapsed into darkness.

We loaded Nina into the car, where I tried to eat some of the wonderful snacks Dr. B's wife had packed...but I was not hungry. Normally, I love to eat, but I have discovered that survival does not require much sustenance. How can I eat when my baby is so sick??? Nina on the other hand, was very happy to eat some turkey, chocolate milk, and a Tiger's Milk bar. I was so happy to do the simplest of activities with her, eating! Why hadn't I appreciated these times more often???? Simply put...I thought I had forever with her, and now I was being robbed of it.

Somehow we did not get stuck in traffic. For those of you living in Southern California, you can appreciate how that in of itself is a small miracle :) During this entire drive, I had been communicating with the Marbans. In the few hours after receiving the diagnosis, Dr. B and the Marbans had assembled the world's best team of neurosurgeons and oncologists. Somehow, these incredible people made time in their ridiculously busy schedules to fit us in. As we got closer to Cedars an overwhelming feeling of humility began to take over me. The thought that complete strangers, highly esteemed in the medical field, would want to help us at a drop of a dime was daunting. I stroked Nina's leg and prayed that they could help me find a miracle.

As soon as we arrived at Cedars, we were met by Linda Marban. Back in Santa Barbara, I had called our friend John to Todd's side, to strengthen him. This time, the friend waiting to share the burden was for me...and how good it felt!

Eduardo and Linda Marban are the rarest of people! They are brilliant, beyond comprehension, and are literally changing the world with their research and hard work. Their accomplishments read like a made-for-tv movie. Yet, what is mind-blowing is not how they have transformed the field of cardiology nor who they know or can have access to. What is mind-blowing is their capacity to love and be generous. The Marbans literally stopped their entire lives to help me search for a cure for my child. Who does such a thing in 2010???? We are a culture of selfishness and we shape our children to think of themselves first and others last. But not the Marbans! They are the living embodiment of Christ's heart. How blessed we are!!

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