Life Without Grey

Life without Grey is becoming more the norm than not. At times, it feels like he was just a dream. But what a great dream he was! I can still close my eyes and see him, smell him, hear him. I know he was really here. And I know that he still is. I feel him everywhere, and it's nice.

Doctors at Duke University, who lead the research on Krabbe, asked if they could view Grey's medical records. They are always looking for similarities and differences between Krabbe kids to try to make since of this horrible disease. So we asked Grey's neurologist to send them to us. Bill and I sat together as we read over everything, including his autopsy. So many symptoms we seemed to miss. So much information, that as his mom, I really didn't want to know. I can still see his doctor at our last appointment, shaking his head in disbelief, as he told us that he never thought he couldn't fix him. I think we all mistook Grey's spirit for his health. He was just so sick. But you would have never known it.

Grey's spirit is what is helping me to heal. If you could have seen it, seen his spirit leave his shell, leaving behind his poor broken body, you'd know that there is nothing left for me to do but to celebrate his life. And now, that broken body no longer contains him. He's everywhere. He guides me. Every day he shows me gifts that he's given me. Gifts that I would have taken for granted before, or just completely missed.

Just within the last month, I have really accepted Grey's loss and found peace within it. He really did change the world, and he changed my world. I will never be who I was before this. I wouldn't want to be that person anymore, although at one time I thought I would miss her. I am coming out of this a better person. To be any less would not do Grey justice.

I struggle every day to remember to be who Grey would want me to be, to make him proud. And in becoming that, I continue to heal. I have not seen many of you in a couple months. But I think you will be proud of who I've become. I think I've been able to keep the parts of me that you as my friends loved. But I am excited for you to see what Grey's loss has made me. I'm excited for you to see that I have made it out of this still intact, stronger than I ever anticipated.