My Jessie Journal:: Hi Sweet Pea, it’s daddy! I was reminded this week that you shaved my head 5 years ago…so I decided to shave it again in honor of you and all of the kiddos that will be at the gala Saturday. It feels different but good. I just want all of them to feel comfortable being bald. I love when I see comments on Facebook that say… “Bald is Beautiful!” That is such a true statement….and even though only a handful of people saw you without hair I always thought you were beautiful!!! I loved kissing your bald head and reminding you that I was still there and had no issues with you missing hair.
A father should always accept their kids no matter what they look like…it’s the inner not that outer that matters most….the heart, soul and mind. The heart that says…love! The soul that says…care! The mind that says…keep going! That is true inner beauty. The sad part is people tend to judge us on our outer looks way before getting to know what’s on the “inside”. This entire NEGU and JoyJars movement started because of what was on the “inside” of you. That is really special to me.
Jess, please ask the Big Guy to send me some extra strength…we have the gala Saturday, Fired up For Summer party on Sunday and then off to Denver to raise support for children fighting cancer on Tuesday. I’ll take a little “wisdom” too…never can have to much of that.
Have you met Katherine the Brave yet? I’m sure you have. She joined you recently due to DIPG…please look after her. When her daddy texted me the news my heart just sank and all my memories when back to the day you took your last earthly breathe. NO child…NO parent…NO brother….NO sister should have to go through what all of the courageous families have to deal with. It’s just so much to absorb. No wonder all of us end up with PTSD and have to deal with all of those realities too.
Someone recently said… “Erik, looks like you have recovered.” I said… “thank you”…but in my mind I was thinking…“what does recovery look like?” I don’t feel like I have recovered from anything….rather found a way to accept a new normal for my life. A life that is “ok” smiling…even when my soul hurts. A life that is finding freedom in tears. A life that no longer cares what others think. A life full of sharing YOUR story. I life of enormous stress but also amazing success. A life that I would never want others to live but when they call I try to help as I can. This life is not the one I had ever dreamed of but it is the life I have been dealt….so I play to spread JOY with you by my side and always in my heart. The finally tally of my life won’t be measured by what I have…rather what I gave. Just like you Sweet Pea!!! You are my inspiration!
I miss you so dang much!
Love you….
xoxo,
daddy
