Day 771/143


The energy in the room has shifted once again. This happened as the day progressed; this morning, Benjamin walked to the bathroom. This morning, Benjamin was still drinking small sips of root beer float from a straw. This morning, when Michael said ouch, Benjamin cried with empathy. Now, we are rising and falling with Benjamin’s labored breaths, riding waves of heartbreaking grief, intense pride, and quiet peace.

Michael and I seem to be taking turns alternating these experiences. One of us will weep silently while the other holds us both upright. Banyan is feeling deeply and authentically, and expressing such tenderness for his brother that it pierces me. As for Benjamin, he is completing a long, arduous journey. His breathing is slow and his pulse is high. His body is so weak and shaky he can no longer stand or hold his head up. He is achingly thirsty. His words are barely translatable and he is sleeping almost constantly. And, though he is still trying hard to be independent, he knows that is body is ending its work. Through tears and whispers, we have told him that he can let go whenever he is ready. His spirit is a bright star that needs to leave a failing body. It’s okay to be afraid, but there’s nothing to be afraid of. We will all be here with him as he finds his way through.

Your whole spirit is made of love. 

I know that Benjamin is not his body but his spirit, and his spirit cannot be destroyed. But it is his body that I grew in my own. It is his body that I birthed and nursed and cleaned and dressed and fed and loved so fiercely. It is his body I tried so hard to preserve. This is a strange and primal pain in my womb, watching this body die. And it is against my womb that Benjamin lays his head now, for comfort, and says with incomprehensible relief, there we go. 

You’re stronger than the pain.

So many times through these last two years I have said these words to my son. I am saying them to him now, and I believe them with my whole heart. I hope they will be true for us too, as we say goodbye, and learn how to live without Benjamin here on earth. Most of the signs of approaching death are here, except one–Benjamin’s hands are not cold at all. They are as warm as they can be. We have all held them so much, and so close.

There is so much love in this room. I am so proud of my family. I am so proud of my Benjamin. Overwhelmed. Honored. We don’t know what the next hours or days will bring. But we know what the last nine years have held. So we say to him, over and over, between words of love and other prayers, thank you.