Today has been 2 weeks since we said good-bye to our little cowboy and heaven welcomed the "bestest boy ever!" It seems like an eternity since we have gotten to hold our little boy, but we are comforted in knowing that he is being held in GOD's loving arms. The last few weeks have been an emotional roller coaster of ups and downs, but I would say that overall we are doing well and going on with life just as Ethan would have done. Ava girl is adjusting and still has her moments, but is doing well.
A friend that we met through all of this came to Ethan's visitation and her daughter, Abby, gave Ava a note telling her that she lost her brother Parker too and now Ethan and Parker are up in heaven together. This note has comforted Ava more than one could imagine. Ava seems at peace knowing that her brother has a buddy to play with up in heaven and she prays for both Ethan and Parker each night. Both Ethan and Parker lost their battle to Neuroblastoma. Ava knows that her Ethan was very sick and that we tried to get him better with all of the medicine, but we just couldn't get him better, but now he is all better up in heaven. Ava talks about Ethan all of the time and that is exactly what we want her to do. We want her to remember him so we talk about Ethan a lot and watch all the videos we have and our house is surrounded with pictures of our kids. We are thankful we have those to keep the memories alive.
We still don't plan on updating very often on here as it seemed like everyone knew everything about our lives over the past 2 years that it was almost like being on a reality tv show. It's been nice not updating and trying to get back to a normal life. We know life will never be "normal" again, but we are trying to adjust. We've been doing a lot of swimming the past two weeks and just hanging out as a family.
We wanted to let everyone know what we have decided to do with Ethan's memorial fund. If you google neuroblastoma you will find that it effects approximately 600 children each year in the US. Seems like such a small number, but we live in a town of not more than 600 people and this disease hit our small town, our little boy! It all seems so surreal that all of this actually happened, but if we can do anything to keep that next child to be diagnosed to not have to go through what we have, that would be wonderful. We have decided that we are going to put most of the memorial money towards research that goes directly towards neuroblastoma. A doctor by the name of Dr. Sholler has dedicated her life to research this disease and has established a program to do individulalized treatment of patients with neuroblastoma. Ethan was one of the first to have this completed and although the results were too late to save our boy we strongly believe that this is the approach to save the children that are effected with this disease. Dr. Sholler is with the University of Vermont and we are proud to give her this donation in hopes that one day a cure will be reached so that every child that is diagnosed with neuroblastoma will survive. We want to thank all of you that contributed to Ethan's memorial fund. A small portion will go towards Ava's education fund as well.
Thank you all so much for the wonderful notes that we have received in the mail. We read each and every one and we are so honored to know how many people have been thinking and praying for our Ethan and our family. Ethan was a great boy and will forever be missed. As Ethan would say to me "Mommy, I can do anything, I'm SUPER E!" We pray that our Ethan is having a great time up in heaven, swimming in the clouds, riding his horse Sondador and playing with all the other little children. One thing that I would love to read about on Ethan's guestbook are little stories about our Ethan. If you happened to know Ethan well and have a story to share, a "famous quote" of his, please share so we can write these down. I have started a memory book of just quotes and little things that I never want to forget about our Ethan so this would be wonderful to help me with this. GOD BLESS you ETHAN!
