Dear Jakey,

It just happened again. The smack in the face when I realize that you are gone. My heart tightens up. I feel like I am going to puke. I can’t breathe. It is really just awful. It is not just with these moments that I miss you. I walk around now with something missing. I don’t know how to be out all day doing stuff because I never really had more than 3 hours apart from you. And if I was away from you for more than 3 hours you were with Kate and I could harass her and know everything that was going on. It is hard trying to be me without you.

But again, I am trying so hard to be positive. And in the midst of this bullshit, there is a lot of positive. I feel pretty damn good about humanity which I am not sure I really did before. The kindness of those around us and the company of great friends has been the light in this miserable dark and cold tunnel. And Jakey, I have taken so many people to you these last three days. Cynthia, Kristin, Kelly, Briana, Emily, and Jen have all come with me to see you. And Vera and Bridget brought you an ornament and flowers. Miss Trish bought you a special ornament and will be by soon too.  Ethan has upped his visits to twice daily. Daddy does his secret prayers with you.  Abue and G-pa visit. And I am your biggest stalker. And the best part is that I noticed things on your tree – a ribbon and a candy cane. And things under your tree too – a scooby doo van. It means that people are visiting you without me. And that is awesome.

I still worry about you my little man. Not about your seizures or your sleep or your poop anymore. I worry that people will forget. Forget your strength, your lessons, your resilience, your beauty, your will, your spirit. All that is you. I promise I won’t let that happen. You were and are the most amazing boy. I miss you so much I cry and I hurt. But I have faith. Faith in you and me. Faith that our time is greater than what we have had on Earth and I count the days until I see you again.

With so much love,