TeamNEGU Blog

My Jessie Journal:: Hi sweet-pea…we ALL miss you. I came home last night from work and missed 179902_341357422597019_2007170317_nhearing “daddy’s home” and being greeted with your amazing smile and strong hug. People post daily how they miss your blog and your notes. I go back and read them. Your words were so far beyond your age. I still think you were an Angel sent by God with a special mission to show others just how bad and big pediatric cancer is and how much we all need to unite to help empower the kids still fighting to Never Ever Give Up.

Your little “NEGU” has become a symbol of hope, perseverance and strength to so many. I will never know exactly the true purpose behind your courageous fight until we meet again…but as you know our faith teaches us that God can take bad and turn it into good, which He clearly is doing. You have touched 100,000’s of people and will continue….all because you asked mommy and I that one day…”How can we help them?” You wanted to help encourage all of the kids stuck in hospitals fighting cancer. Those 5 innocent words have changed my life, have changed our family, have changed our community and are changing lives daily. Maybe someday, they will change the world and help people unite to be a unstoppable force of encouragement so every kids can personally be empowered to Never Ever Give Up!!!

A cool thing to celebrate is we are approaching 15,000 JoyJars stuffed and sent to kids fighting cancer. We are in over 150 Children’s Hospitals now and 175 Ronald McDonald Houses. We calculated that we will need to send out over 20,000 holiday JoyJars. I remember you loved making those special ones so kids got a boost of joy during that tough season. We are looking at putting a “I’m a NEGU Kid” t-shirt in each jar along with some goodies so they can be reminded to Never Ever Give Up…just as you asked. Your amazing school Melinda Heights just collected over 4,500 toys for JoyJars…there ROCK!!!

I was looking at photos of you over your 10 month fight and my heart just hurts from how cancer stripped so much away from you, which I’m sorry for.

I’m sorry I couldn’t make your boo-boo go away
I’m sorry you lost your hair
I’m sorry you lost your vision
I’m sorry you lost your hearing
I’m sorry people stared at you
I’m sorry I didn’t let you always eat “sweets”
I’m sorry the chemo made you feel crapy
I’m sorry you had to have your head locked to the table during radiation
I’m sorry it was hard to swallow due to the tumor
I’m sorry the steroids make your face puffy and your joints hurt
I’m sorry that you had a hard time walking and balancing

I’m SO SORRY that in the end we didn’t get to talk. I would have told you….”Don’t worry sweet-pea, you will be safe in God’s arms. He will comfort you, love you, care for you and be with you until we meet again. Thanks for allowing me to be your daddy. I will forever cherish every moment and memory we had together. I will NEVER forget you and I promise you I will make your wish of “encouraging EVERY kid (all 250,000) fighting cancer to Never Ever Give Up” come true. Have fun…laugh hard and swim fast. I will see you in a “blink”. I love you!”

I know you would be saying “stop it daddy” and I know you are cancer free and where God wants you but there is an inherent drive in all “daddy’s” to care, protect and provide for their family. I just feel I didn’t live up to my end. Having to surrender your care and outcome to God every day for those 10 months and 2 days was the hardest thing I have ever had to do. I just wanted to control everything but in the end I had to give up control and trust. I still share my feelings with God and He knows I feel like He robbed us but as I have also learned that is just driven out of a deep love and loss. I do trust God explicitly and know you are ok. I just miss you so much sweet-pea!

Have a great day!
xoxo,
Daddy

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