I’ve learned a lot about myself and others through this process.
Yesterday, my forty-eight hours were up. I was supposed to make the decision to end Eric’s life after that time period. I’ve thought long and hard about making this decision. I have thought about it since May 7th when it first happened. I never let go of the fear of having to make that decision.
I told myself that I would donate every organ I could, because he was young and healthy and he could provide life to others, he could provide sight to the blind, and I liked knowing someone else could live and thrive because of Eric. I told myself that somehow it gave Eric’s life, and death, meaning.
I was promised by the leading neurologist that Eric wouldn’t live until May 22nd. I was told that his brain was going to explode through the stitches and it would bust out of the area that is missing skull. His intracranial pressures were through the roof and they couldn’t bring them down. With this thought in mind, I made myself believe that organ donation was a perfect route. He would die from brain death.
Eric did live and never broke through the stitches in his head, though his cranial pressure is still very high and he is somewhat disfigured from the swelling, he is still breathing above the vent.
I felt the pressure from the hospital growing. They wanted me to do comfort care. “Let him go with a dignified death.”
Those words rang over and over in my head. There was nothing dignified in what the hospital did to him and they are solely responsible for Eric’s current condition. They don’t even try to deny or hide that fact. Now, I should give him comfort care. I am expected to pull a ventilator on my child that is still breathing; as he breathes they administer more and more morphine until he goes into cardiac arrest. We lose his heart for donation because of the cardiac arrest that they cause, but they can still harvest the rest of his organs. “It’s the humane thing to do.”
I’ve heard all the comments that make me sound like a loving and selfless hero. Those kind words began to feel abrasive. It wasn’t and isn’t true. I am not a hero because I am willing to donate organs. I am not selfless because I’m willing to “part out” my son. Actually, the raw and bitter truth is probably the most selfish thing I’ve ever done in my life. I am not donating because I’m so good hearted I am sacrificing Eric’s organs to give life to the less fortunate. My truth is I am donating those organs, if I can, because I DON’T WANT ERIC TO DIE and if I can keep him, or pieces of him, alive in another host then he isn’t gone, he isn’t dead. So please, I’m no saint.
Yesterday I came to terms, being faced with ending his life. I thought out “dignified” death. This is what I believe:
Every life form, at the time of distinction does everything possible to maintain survival. Eric wouldn’t be any different.
In my mind, though I know he never wanted to live as a vegetable, he is locked in his failing body. He has had no choices. Fate made choices, doctor’s made choices, I made choices, but Eric’s voice is unable to be heard.
My choices remain: 1) Pull the ventilator and let him go into cardiac arrest eventually, after they drug him so he doesn’t feel the pain and torture of suffocation. With that, we lose the heart for donation, but all of his other organs can be donated. 2) We wait for the next stroke that will take out the brain stem so he will go brain dead and then we can “harvest” his heart along with his other organs. 3) Because his body is deteriorating, let him go into his own cardiac arrest and we lose all the organs and he is gone, no donations.
Because I have dealt with many, many hurtful and close deaths I have whispered “I love you, let go, be free” into many ears. I said those words with great love and acceptance of my personal loss, but it was never my son.
I have spent Eric’s twenty-two years, kissing booboos, scaring away monsters, and making things better. I can’t say the words “let go it’s okay to leave.” I can’t give my son the permission he may be waiting for because I see the scared little boy, the one waiting on me to make it better, to fix it, to fix him, and I know he will be so afraid if he knows I’m giving up on him. I wouldn’t. He knows that. I can tell him I love him, but I can’t and won’t end his life with his last though of his mom being the one that ended his life. I believe he would be screaming, “No, mom, what are you doing, I said three months, please mom, don’t do this, why are you doing this to me.”
My opposition argues with me, they want the organ donation; they want a dignified death for Eric. They believe he would be screaming to put him out of his misery, but life, in its rawest forms fights to preserve itself and Eric wouldn’t be any different.
I have given the word “dignity” a lot of thought. Dignified death? Is death, brought on by man dignified? Is death, by the hand of family or medical personal dignified? What is dignified death?
Death is death. Just because we have the technology to end a life, do we have the right to do so? Do we have the right to put someone into eternal sleep because the costs have gotten too high or the family can’t handle any more traumas? Is that what we as a people have told ourselves; it’s humane, let them go with dignity because ending someone’s life is more convenient and cheaper than the alternative? I don’t think that is dignity.
Dignity to me is accepting fate with honor.
So, no matter how selfish I am in wanting Eric to live on, no matter how much he is costing me, my family, or the hospitals, I am granting Eric his own say. I am backing off. Eric is in control of his own death. I do not have the right to take his life, nor does anyone else. I do not have the right to farm out his organs. This one is Eric’s call.
I believe, no matter how bad I would wish for Eric to live on in others, that Eric will die as Eric chooses and through that death he is living out his fate. The death his fate chooses will tell me if I can donate organs. If he goes brain dead Eric is telling us to take what we need to save others. If he goes via cardiac arrest and we lose the ability to donate any organs, so be it, it is his way of saying: “I’m out and I’m taking me with me.”
I am backing off and allowing Eric to complete his life, his way, and to me that is dignity.
Thanks for listening,