The ugly truth. And also love.

There is a child who it looks like will be joining Eli in the after, and whose family will be joining my club. He has an immunodeficiency, had a bone marrow transplant at Duke several months ago, and was very recently transferred from the bone marrow unit to PICU with breathing issues. It's not said and done, but they are very nearly out of options. Mostly they are waiting. Waiting for a test result, waiting for their child to either have a better day or a worse day so decisions can be made. Waiting for the doctors to come up with something. Waiting for God to perform a miracle. Waiting.
God dammit.
It is heartbreaking to know that another family is going through every bit of trauma we did and will leave Duke with neverending heartache.
It is also complicated. I have so many conflicting feelings.
I hate that this child is dying. I hate that he and his family have gone through so much- being uprooted, away from their community and support system, financially decimated, and suffering, so very much suffering.
I am deeply sad for this family.
Like a switch, it triggers anxiety and the hopelessness of depression. I can see, hear, and feel every detail (even the ones not shared. Especially those.) because I KNOW what it's like to watch the agonizingly slow trainwreck of your child dying in that very place. Of watching the machines and WILLING them to display better numbers, and nothing happening.
My brain is so foggy today. I'm having a hard time typing sentences. I keep retyping the same words and deleting them because I forgot I already wrote them. It feels like trying to move inside a jar of molasses.
I am numb because I cannot possibly take in more pain.
There is a sliver of envy as well. I wish I was still with my son. I wish I could touch him and sing to him and read to him and give reports on his progress.
I don't really want to be back in that PICU room. It was a brand of hell. But at least Eli was there.
I have mentioned before that one of my grief responses has been self-righteousness. I know it's ugly. It feels good, man. Like a drug. Since starting antidepressants along with ongoing therapy I have had the brain space and energy to work on that particular crutch. But a low blow like this pummels me back to the trenches. And my old survival tactics emerge. And here I am, in my ugliness, thinking, "I knew it. I knew this would happen. I've been waiting to see when it would." I mean, what the hell is wrong with me? That's disgusting. I reject it. But it's still there, just a hint. There is a fine line between feeling self-righteous about this and just plain being a pessimist. I am guilty of both. My experience absolutely has a hold on my outlook for pediatric immunology and oncology patients. But I confess it's not simply that. I don't think. It feels like there is a shred of self-righteousness mixed in the pessimism.
This makes me think about our doctor at Duke, whom I will always adore. The man never gives up, never counts his patients out. He goes down swinging. What a slap in the face my attitude is to his eternal hope and effort that this kid and this kid and that kid and that one could make it. They could, you never know. His approach is to be as proactive as possible until there is nothing left to do, and then you provide as much support as makes sense and see what happens. Sometimes they make it. This little guy whose future has my brain in a tumble today could pull through. I don't see it happening, but it could. I see. "Oh my god, he's dying the same way Eli did."
I'm so sorry for this boy's family that it has come to this. I wish none of us knew all those medical words and what the numbers mean, or this level of pain. I know no matter what happens they will survive, somehow. It's such a long road, though. No one deserves this.

A friend of mine bought me this mug recently. I'm drinking tea out of it today. It's a nod to the musical, Rent. If you don't know what I'm talking about, here is the song.

It's a good reminder. As much pain and sorrow as we endured in Eli's sickness and death and in grief, we experienced so much more love with him, for him, from him, because of him. Love was with us and still is. Love will be as constant a companion as pain for this family facing the worst possible outcome.

It's just so complicated to have all these feelings and watch others experience the same brutal loss.