TeamNEGU Blog

joyjam

My Jessie Journal:: Hi Sweet Pea, it’s daddy! I miss your “touch” so much. Touch is such a powerful tool to be used to comfort when someone is in need. It can be as simple as a handshake and as powerful as a hug. Touch is needed in life and when it stops…life seems to stop. I remember so many times that you just wanted me to hold you and hug you…no words…just touch. I remember so many times you would give me such a massive hug and there would be little to no words. Just a tight squeeze. I really miss your hugs!

I was reminded about this in NY when we were there the past three days for the JoyJam. Due to the amount of people walking about, I told JT he must hold my hand. The best part was when he would just grab my hand before I got to his. You would always do that. I really miss your hands!

Speaking of NY…WOW! We had close to 150 people attend our very first JoyJam ever. That is so amazing when we really don’t have a ton of people on the East Coast. We sure do now! We are already looking at dates for JoyJam NYC16. The band Jessie’s Girl was incredible and they totally knew your story and helped us raise much needed awareness and resources. I love this picture of me speaking at the JoyJam and having you behind me. You are always with me Sweet Pea!

Last night on the plane was hard for me…I was watching this movie about a giant earthquake in California. Near the end, the daughter of the main character drowns . So the dad gives deep into the watch to find her and bring her to a near by building. Then he tries and tries and tries to resuscitate her. She final comes to and the movie ends happily. All I could think about is having to sign the DNR form with the hospital and hospice team when they asked mommy and I too. It was so hard to sign. I felt so guilty. I felt like I was giving up on you. Mommy and I just didn’t want you to suffer anymore and we knew, outside of a miracle, the tumor was going to win in the end. So rather than an active of giving up, we saw it as an act of love because we couldn’t imagine you being kept alive by machines. Dang…parents shouldn’t have to sign these forms.

Here comes the tears so I’m going to stop and get ready for work. I miss you so much Jess. Come visit me soon please!

xoxo,
daddy

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