Dear Connor,

It’s completely incomprehensible.You’ve been gone for 1000 days. How can that possibly be true? Your last breath was at about 2:24am that morning. I had my hand on your chest and felt your last heartbeat. And we waited for a doctor, who we’d never met and who had never seen you, come in and tell us what we already knew. And then, even though we knew you were going I was not prepared, in any way, to actually make my feet move and carry me away from that hospital room and leave you there. There is nothing in life that can possibly prepare a parent to walk away and leave their child, dead, in a hospital bed. In the conversations I have with myself, in my head, I call that walk away “Dead Momma Walking” – kind of like my own personal Green Mile. I had no idea what I was even walking to. Even today I still cannot comprehend that this is true.

On that day, January 9, 2014, I could not imagine being here in a world without you for a single minute or an hour or a day. But somehow one day turned into another and then another…and I’m still here. And now I’ve woken up in a world without you 1000 times.

I don’t remember much about the first year. My brain was numb. But I remember unbearable pain and disbelief. I remember being surrounded by your friends. I remember Hannah telling you at your service that she’d take care of me. I remember Christian telling me that he and Hannah and Nick will always be my kids. I remember days when I could not wait for Scott and Nick to be out of the house so that I could cry out loud. I remember days when I would leave the house and drive the Bonny Doon mountain roads and scream your name at the top of my lungs until I felt like my throat would bleed. I wonder if you heard me.

The 2nd year was even worse. I expected that. I knew that the numbness would leave me at some point and I’d have to feel the reality. But I didn’t expect the 3rd year to be the worst yet. And this is how I know that unless a person has experienced child loss their brains cannot truly comprehend it. There is no playbook for this one. While death is a natural part of life, the death of my child is not. The death of you…it should not be true. So I’m in completely uncharted territory and there is no one, except another parent who’s experienced the same loss, that can understand it. But somewhere in this 3rd year I realized what is really happening to me with the loss of you. I will not heal (though the people around me would like to think that I’m healing). Grieving the loss of you is not a “process”. It’s not something that I will get “through”. I am learning to live with the absence of you. Just as you became the fabric of who I am when you were born, your death is now becoming woven into the fabric of me. I am learning to live in two worlds. The world of the living – where I function and am productive and behave the way society thinks that I should. I do the things I have to do to keep going. But there is never a time when my heart is whole, there is never a time when, even though I might be happy, that I’m not grieving. Some times when I’m out doing “the normal stuff”, I wonder if anyone that I’m interacting with actually has any clue that just under the surface there is you.

Somewhere in this 3rd year I actually began to think about what the rest of my life means now. Since you died, we’ve done so much fighting melanoma. We’ve raised money to fight this awful disease. I’ve spoken at so many events and told your story so often that I have now lost count. But none of these things have felt like my purpose. I will keep doing this work, because it’s important, but it’s not all. When you were here, you were my purpose. I cannot find meaning any longer. You’re gone. You’re not coming back. Where are you? I don’t want my life to be only about your death. Your death was not your life.

So in the conversations in my head I keep myself going by imagining what I’d have said to you if I were the one who had died. I’d have told you that you need to keep living, to keep going, to keep laughing, to be happy, to stay healthy, to not feel sorry for yourself, to remember that even though my body is gone, I’m always with you. I imagine you saying all of those things to me.

Of course, I can’t stop thinking about your life and how even though it was short and you were only here for 20 years (7,490 days), you had such an amazing and lasting impact. We all say that you “lived out loud” and when we say it we all smile because you’re the very definition of living out loud. You lived your life with unabashed authenticity. You were you and you did with such certainty and proudly that it caused others to be comfortable with being who they were. You didn’t have to think about it. It’s just who you were. So while all of this melanoma stuff is necessary and is making something good out of something awful, I want to remember your WHOLE life. I have come to believe that I honor you and I remember you through happiness and joy. I’m just trying to figure out what that means. I wish you were here, because you were never shy about telling me what I should do and I miss that and I smile every single time I think about it.

I’m so grateful (again, this word doesn’t quite capture the intensity of the feeling) for your life and that you were here. You made me a mom. For 7,490 days you taught me the meaning of joy. And for the last 1000 days the lessons of your life have kept me going. I can hear you in my head.

So tomorrow morning I will wake up, and you will have been gone for 1001 days. I will still be here and you will still be gone. I don’t know why I’m here, but I’m going to keep moving. And I’m going to figure out what living out loud means for me. Love you Bear. Miss you all the world. I know that life doesn’t end. It just changes.

You are the sunshine,

Mom