This post has been in my head for a long time. I knew I needed to write about it, put it out there. I just don’t want to, but I know I need to.
It’s scary sometimes, the things that run through your head when your child is dying or has died. Some thoughts make you angry. Others increase the sadness. Then there’s the thoughts that make you doubt, even hate, yourself as a person, but even more so as a parent.
Then, the guilt sets in.
Guilt is a natural part of grief, especially following the death of your child. I’ve been told this so many times. Parents protect their children, keep them safe and healthy, do everything we can to ensure that they lead long, happy, and fulfilling lives. At least that’s what we should do. When the natural order of life is upended and a parent buries their child, it feels like you’ve failed at life’s most important work. This is an aspect of grief that many grieving parents talk about, most people can deduce and understand it.
Here’s the part not many talk about. The part I didn’t want to share. The part that makes me doubt and hate myself sometimes. I suppose I’ve been afraid it’d make you hate me to. That you wouldn’t understand. I just know it needs to be shared because it’s not an uncommon experience.
There came a point when we knew Caleb was going to be declared dead. However, before that, there had been a glimmer of hope. A thread of a miracle we could hold onto. We’d been told he had brain damage, but we knew kids are resilient. There was activity on his EEG and it changed when we spoke to him, played his favorite music, and played home movies on our phones for him. Caleb was in there. He was heavily sedated, but there was change. We were told it was change and activity, but none of it was normal. None of it was activity that would be seen from a normal, healthy brain. Yet, we had our thread.
We waited for them to bring his body temperature up to see how he’d do (he was being kept hypothermic to try to preserve brain function). We waited for the EEG to not be more important than an MRI because he couldn’t have an MRI with the EEG leads all over his head.
Very late on December 15th, the night of our 13th wedding anniversary, we got the general MRI results from earlier that night.
Widespread, extensive brain damage to all parts of the brain.
The next morning, during rounds, we met with his neurologist. In all reality, we were told, he would likely never wake up. If he did, he’d have no control over his body, his eyes would see, but the link that allows a person to know what it is they’re seeing was gone. He wouldn’t be able to communicate in any way. He would likely exist in a world of involuntary movement and spasm, with a feeding tube. This was if he woke up, if he could breath on his own. Then, there was the chance he’d wake up and not be able to breath on his own or the reversal of not waking, but breathing on his own. We were talked to about decisions of possibly removing life support or withdrawing nutrition.
Finally, it came to the discussion that he’d never wake up. His brain would continue to swell as his temp was raised to normal body temperature, and he would reach a point where he’d be declared brain dead. This would be the scenario that would give Bub the best chance of becoming an organ donor.
No decisions from us.
No taking him off life support decision.
No withdrawing nutrition decision.
That is when I said to myself, “The best possible outcome in this is that my guy will be declared brain dead. Death is the best scenario.”
Then came the war inside my mind. “You’re a terrible mother! What kind of mom would think that about her own child? You never deserved him in the first place. What a horrible person!”
“No! I know my son. I know his feisty, energetic, super coordinated, active nature. That is who he is! That is gone. I don’t want him trapped, a shell of who he is. It’s not bad, it’s wanting him to be free.”
“Liar! You just don’t want to deal with this reality. You’re lazy. You’re selfish!”
“No! I will change his diapers and tend to his every need for the rest of my life if that is the path for him, for me. I will always love and care for him. I just can’t will him to be here for the mere presence of his physical being when who Caleb is is no longer there.”
“Go ahead and tell yourself that, but he’s still your son. Did you love him because he was feisty, fun, active, playful, and a very physically kid? Now that you face a different Caleb, your love disappears. You would rather your child die than be with you! There are no words for people like you!”
“No! It’s because I love him, fully and completely, that I can push aside my desire to see him everyday and hope and pray for peace for him. I’m not a bad person. I’m not a bad mother!”
Then, later that night, at 10:15, he started neurological storming and we knew his brain was shutting down. I laid next to him, I held him. I felt his strong grip for the first time since that awful night as his reflexes went into overdrive. I told him it was okay to let go. I told him he’d been so brave and we would miss him so very much, but we would be okay and do everything we could to honor and remember him. I told him over and over that I loved him. My tears wet his head and some part of me screamed that this wasn’t really happening and that my thread hadn’t been cut. I contorted and wailed into a pillow at the foot of the bed as sounds came from my person that only come in that situation. Sounds that no parent should ever have cause to make. I leaned on loving, kind nurses half my size as they tried to keep me on my feet. Then it all ended. The neuro storming was over with one final spike in his blood pressure. And I felt a bit of relief. I was relieved to have some answers, to have not had to make hard decisions.
And I felt awful and guilty for it.
Parents protect their children, keep them safe and healthy, do everything we can to ensure that they lead long, happy, and fulfilling lives. At least that’s what we should do. Then, one day, that desire for life seems so selfish because it’s not really living. And you hate yourself.
I know it’s not the same for every parent who deals with the death of their child. I wouldn’t presume to say that I’m in the majority either, but I know I’m not alone. There are things on this path that do not get talked about. Things that are hard in a dark and scary way. I know how much I love my Bubba Love. I know how many times I begged and pleaded for my heart to stop in my chest if it meant that he would live. I know the kinds of bargains and deals I tried to strike with God to arrange a miracle. I know there needs to be a greater purpose.
I am Caleb’s mother, I always will be. At the end of the day, the guilt is still there at times, but my love for him is greater than anything else and that is what fuels us all….Love for our Bub.