cross-posting from nursing blog

So you don’t want to let him go. “Brain dead.” They all file in, in groups of two or three, somber faced, long white coats. Nurses touch your shoulders in the hallway, they speak to you in low tones. Slow, measured words. Your child, your child, he is gone. In every meaningful way, gone. But his heart is still beating. Yes, mechanically pumping away, refusing to stop. A machine with no more soul.

You don’t want to let go. You’ve held him all of his 23 years. You’ve bathed him, wiped his forehead, learned to decipher his mouthed words. It was your genes, wasn’t it, that did this to him? You have lived your whole life in penance, your devotion to him is your self-flagellation, it is your salvation. Don’t take it away, you think, because then what?

I’ll tell you “then what”. Then you cry, you cry for weeks, months even. You save things that were his, touch them, sleep with them, smell them. You throw yourself into his remembrance. You shop for grave stones. You spend hours at a cemetery, staring at his name on the stone, not sure how you got here, who you are, why the name is there, and not on report cards, or drivers licenses, or passports instead. You will beg, each night before sleep, beg and plead for the universe to undo it. Make it go away. You will count each minute, each hour, each day since you last touched him. You will live on, showering, dressing, wiping the kitchen table, spooning food into your own mouth. You will just keep going even when he has not, and that is terrible. Truly terrible.

Herniated. We say the words. Herniated. We equate it with death. We have already decided. But you hear a heartbeat, you want to keep listening, you want to be able to reach out and touch his warm skin. They pronounce him “brain dead”. After much delicate handling, they finally tell you that they will not prolong him in this state. They will not. They bring the imam. They bring the ethics committee. They bring the patient relations representative. You call every hospital in the area. Keep my child alive, even if he’s not really living, you beg.

We shake our heads, we mutter “crazy” under our breaths. Everyone is fed up, absolutely fed up, of this carrying on, this refusal to face reality.

How glad I am that I did not have to say, “yes, go ahead, withdraw”. The choice was taken from me, and I’m grateful. I understand you. I want you to change your mind, but I understand you.

Peace of the universe to you, mother.

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Categories: baby loss

4 Comments »

  1. …You spend the rest of your life telling yourself that you should have waited just one more day to turn their machine off…. One more day… Could of, should of, would of changed everything….

    A heartbreaking, yet beautifully accurate post.
    Peace of the universe to you too, Mother. Xx

  2. For me the what ifs go two ways. What if we’d waited longer, could he have magically recovered? Honestly, no. What if we’d waited longer and we’d not had the hours with him off the machines that we did? My partner has said a few times “it was easier than I ever thought a decision like that would be”. Our experiences of everything are so different.

  3. I am so sorry. There is nothing good about outliving your child but I am thankful that Jake made the decision to go on his own. The doctors had told us on a Friday that we needed to start thinking about taking him off the machines. My husband and I agreed to wait the weekend and pray for a miracle. We did not get the miracle (or maybe we did) – Jake died on his own Saturday morning. Sending you hope and hugs.

    • Thank you… just a note, it was not my child in this situation, this was a patient situation where I work. It can be a blessing not to have to make that choice, a terrible blessing but nevertheless. I feel deeply for her and am thankful not to be in her shoes.

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