Guilt after the death of a child

Guilt is such a powerful emotion. It can literally consume you if you let it. It will sneak up and make your stomach turn to ice. That anxious, creeping feeling makes it’s way up from your belly, through the shoulders, into your throat, and then into your head. It can literally make my lips tingle if I let it take over.

You have such a simple choice. To feel guilty, or not to. But there’s nothing simple about it.

Guilt over the nights I left his bedside earlier then usual to sleep.
Guilt over the times I zoned out from holding him and just read or browsed on my phone.
Guilt over not getting to know the other moms that were going through the exact same thing as we were.
I feel guilty when I’m not sad, or when he isn’t right in the front of my thoughts.
I feel guilty that I didn’t take any videos of him.
I feel guilty that the last weekend he was alive, Dean and I spent a lot of time together. Out for dinners, and shopping for strollers and baby toys.
So much guilt that can make me question everything, including how good of a mom I was to Killian.

But guilt is manipulative. It takes the reality and twists it to reinforce its cruelty. The nights I went to sleep, that I wasn’t there until 2 am, were the nights that I was trying so hard to take care of myself. The nurses, social workers and other moms stressed, about all else, how important it was to take care of myself and not get run down. So that when things stopped being so good with him, I could be there.
The times I zoned out I needed to keep me sane and gave me a semblance of normalcy. It allowed me to stay in contact with friend and family. Seeing pictures of my home and normal life kept me going.
I didn’t get to know too many other families, because I was spending every moment I was there, with him. We were getting into the groove and routine that I’m now so grateful that we had. I thought I had so much more time to make friends.
I didn’t take videos, because I was living those precious moments with him, fully engaged.
I’m not always sad because I have such amazing memories of him, and two other beautiful boys to be a mama to.
I was out with my husband to keep our bond strong.
I was out shopping for the tools I needed to give him the best possible life in that hospital room.

The one that hits me the hardest. The big one. Is guilt over the Gtube surgery. I was terrified to agree to the surgery. The thought of putting him through a somewhat unnecessary surgery made my insides turn. But, with the guidance of staff, doctors, statistics and research, I made the decision to. I signed the release forms for the surgery. I was the one who made the ultimate decision. He left his room upstairs at 9am that Friday for his routine Gtube surgery, and died 3 days later. The surgery is not what killed him. I understand that. But the surgery triggered something in his heart.

We found out later, the reality was that that something would have failed sooner than later either way. But the surgery that I agreed to pushed it forward.
I think about that little bit of extra time that we could have gotten. Would he have got a heart? Maybe. Maybe not. We’ll never know.

The Doctor who was calling the shots in the 40 minutes they were fighting for his life heard me say that the surgery would haunt me for the rest of my life. He came by, hours after Killian passed and sat with us and explained what it was that killed him. It was a bad condition on top of a bad condition. There were parts of his heart that we didn’t even know were broken that ultimately stopped it from beating. He told us that the reality was that Killian would have probably had, at the best, a few more weeks. He told us that even if he had got his new heart, he most likely would not have survived the surgery.

The decision to give him that surgery was made to improve his quality of life. It was to allow him to get the tube out of his throat. Without the tube he could have his hands free without the concern that he would pull out the tube. He could explore his face and sleep with his hands out, without needing someone there to pull his hands away if needed. It was done to give him the chance to develop as normally as he could, given the circumstances.

Common sense, medical research, some of the most brilliant minds in our country, assure me that the surgery is not responsible for Killian’s death. That Saturday he was himself again, with no real concerns. But guilt is a bully. It doesn’t care what the truth says. Every time it tries to rob me of time, and tries to replace those wonderful memories with anxiety and sadness, I try to remember that every decision that was made for Killian was made for him. Everything. Every choice and moment was made with so much huge and unconditional love. I will forever try to hold onto that.

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