Praying for a Miracle!

Always ready for a smile!

It is with the saddest of hearts that I start this blog. As all of you know by now, our precious Nina has been diagnosed with an inoperable brain tumor in her brain stem. We have spent the last four days in a whirlwind that I would never want to inflict onto the cruelest of people. Nothing in life can prepare you for the pain you experience when you are told that your baby, the treasure of your heart, is dying and there is very little that can be done. After the longest, darkest, scariest, and most humbling and heavenly grace-laden 48 hours of my entire existence, Nina and I have returned home to join her daddy and big brother. We are so happy to be home and with the two boys we most love in the whole wide world!!

Indeed we are happy to be home, no one more so than Nina! But we are heartbroken!!! We have been told that we maybe have 6 to 12 months with our gorgeous butterfly!! We need a miracle!!! Every fiber in our being pleads Heaven above for a miracle!!! Please pray for our Nina and pray that we will have our miracle and that she will be healed! Please also pray for our strength and peace! If our miracle is that we got to have our angel for 5 years then we will praise God and rejoice. But in the meantime, please pray with us for her healing!!!!! All of our prayers will not fall on deaf ears!!! God is good and we praise Him for each and everyday we have with our Nina!

I also want to take this time to thank our entire family and all of our friends for the outpouring of love we have received. The news we were given was obviously overwhelming, but the love that has been given to us by hundreds of people, some family, some friends, and some complete strangers has been equally overwhelming. When life is safe and good, it is easy to get wrapped up into the mundane distractions of everyday activity and miss all the ways in which God's hand is ever present in our lives. However, when your life as you know it is destroyed with a few simple words....diffused interior pontine glioma.....God's ever present love and work becomes unbelievably clear!!! Each day has been a complete nightmare but also a blessing because we have finally seen how much God loves us. Todd and I have always understood that God loves us but we did not truly "know" the depth of that love until this week! We are humbled and thankful! God's word is alive to us today more than it has ever been!

At 5:15 in the morning on 8-20-10 I found myself thanking God for everyone's love, prayers, and blessings. But I also found myself wondering how we could respond to such love...how could we keep everyone informed. That is when I thought it might be helpful to create a blog where we document all the aspects of this journey. Not only would this enable us to share all our information and the state of Nina's health with so many who love her and our family, but I thought it might be a cathartic experience for me and Todd as well...a way to document and never forget.

After much thought and prayer, I decided to create this blog as a daily journal, documenting all that we as a family are experiencing. Before starting however, I want to thank each and every one of our family members and friends. Thank you, thank you!!! I also want to thank a few specific people who held my hand each and every step of Wednesday-Friday, the absolute darkest days of my life.

I want to thank Dr. Daniel Brennan, our pediatrician and my colleague, who has gone above and beyond the call of duty in supporting our family! Dr. Brennan, you are a saint, a rare man in this world, and Todd and I are indebted to you forever! When I first met you 10 years ago, little did I know you would be the one to hold my hand and hug me when I received my child's death sentence. Our working together was not coincidence! God knew that you are man after his own heart and that you would be able to help our family, bless our family with your love and compassion! Thank you forever!

I want to thank Drs. Eduardo and Linda Marban, my dearest of friends and angels! Who knew that three people who were perfect strangers six months ago would be forever bound as family by the most treacherous of storms! Words cannot express my complete and utter gratitude for your love, compassion, and guidance. You stopped your own lives for days and spent every second trying to help me figure out how to save my daughter's. Without you, Todd and I could have possibly spent the rest of our lives wondering if we did everything we could. Because of you, we know we have left no stone unturned and with you, we will fight and pray with every fiber of our being for a miracle!!! Again, God in His infinite wisdom knew that we needed each other as families and he ensured that our paths would cross. We will ceaselessly thank God for you both!!

Yvonne Bruinsma and Eileen Klein, my two best friends. You are my sisters and you literally flew across the country to be at my side during our darkest of hours. The love you have for our children was never more in display than during this past week. Nina adores you both and you brought us both the deepest of comfort when we were so far away from home and our boys! God is so good to me and His goodness and love was present in each and every hug you gave me when all I wanted to do was sacrifice myself for my daughter's life! Thank you, thank you, thank you!! I love you with all of my heart and soul!

Gordy & Sharon Fredeen, Steve & Dolores Matos, Bruno and Michelle Matos, Shelli Jerner, John and Susan Becchio, Bob and Lynn Koegel, Holly Richard, Jenny Symon, Mendy Boettcher, Jim Stretchberry, Danny and Erika Openden, Larisa Shirotova, Katie Levinger, Jimmy Earhart, and all the brilliant staff and professionals at Cedars Sinai ....thank you for literally coming to our side in our darkest hour. You heard our cries and screams, held us, prayed with us, loved us! God's grace and mercy was constantly made real through your love. We are humbled and cannot thank you enough for helping us survive the worst three days of our lives. We love you beyond the expression of words!!!!

And finally, I want to thank my husband, the father of my two beautiful children!!! I love being a mom, but you were made to be a father!!! I cannot thank God enough for you and the gift that you are to our Nina and Teddy. I have known and worked with many fathers, but none can be compared to you!! You are our children's hero and they are secure in life because of how you have loved them!!!! I am so sorry for each and every stupid, vapid, ridiculous point of contention during our marriage. How empty those things are to me now! I am only sorry it took this catastrophe for me to realize how much of a treasure you are! I love you!

I hope that our families and friends will feel like this outlet allows them to be part of this journey with us. We love each and every one of you. Please pray for our Nina and pray that she be healed!! We need a miracle!!!

Nina- 3 months, Teddy- 2 1/2 years old