My Jessie Journal:: Hi Sweet Pea!!! I’m writing this from Time Square in New York. WOW…lots of 
people and hot. These cab drivers would have made your laugh…they honk so much. We found in your iPad a list of shops and restaurants you always wanted to see here so we are using your list as our itinerary. Shaya and Mommy have added to it so we have lots to do. I just want to stand outside the Today Show with a massive NEGU sign…maybe another trip.
Uncle T and Aunt Kimmy are going to join us for a few days. They arrive tonight. All I think about is our amazing last vacation with you in Hawaii at Kukio. What a treat that was. Seeing you have fun, play in the water, eat, shop, ride golf carts, build puzzles, laugh and just be a kid was so rewarding…great memories just flood my heart.
One thing I’m excited about is to meet this amazing lady who writes books. She wants to help me share your story and the NEGU message with the world. That would be so great if we could do this Jess. Your story inspired and continues to inspire so many. You inspire me everyday!!! She has written 22 books and with some major people so I really feel good about the opportunity. We are going to ask all of your Facebook Fans to submit stories of how you inspired/inspire them to include in the book. It will take a while to get out but I truly believe it will inspire millions to not give-up, not give-in but “go for it” by giving out…just like you did. The other great part of this is she is a mommy and has a little daughter so her heart will be full of compassion. Her daughter knows you and likes to help others too. If you can ask God to help make this happen that would be great. Just give him one of your smiles and flash your blue eyes…it will melt his heart just like it did mine for 12 years.
I was doing so great until I thought of your smile and eyes. (Here comes the tears) I guess because those where the last things I saw from you in your last hours…one brief smile and a peak from your eyes. I never told you this but I was so scared for those final hours to come for months because of what the doctors said could happen. From the first doctor visit, I always asked them if you would ever physically suffer…that was my biggest fear…seeing you suffer and not being able to stop it. One doctor told me that if the tumor grew you would not physically suffer but the amount of your emotional anxiety/suffering would be directly related to what you saw in my eyes. That haunted me for months.
So for months I practiced in the bathroom by myself trying to comfort you with calm eyes even when there was a massive storm in my heart. Rehearsing over and over ways to talk to you and not show fear (or tears) in my eyes was very hard. Thankfully, Maddie James’ daddy shared with me a statement that removed some of the pressure from my soul…he had just watched his little princess lose her 8 week battle with DIPG so he was speaking from experience. (I hope you and Maddie are playing together). He said, “Erik, you will be everything Jessie needs you to be and Jessie will be everything you need her to be.” Although I miss you more than word will ever describe, I’m thankful to God for taking you so quickly. He knew what I could and couldn’t handle and in the end you were in such peace. No suffering…just peace. I don’t know If I was everything you needed me to be but your broken smile, your mumbled “luv you” and a peak from your eyes were everything I needed you to be.
I love you to the moon and back Jessie!!!!
See you in a “wink”.
xoxo,
daddy