Mother Wins Right to End Disabled Daughter’s Life
That’s not true… I think and feel about this ALL the time.
Where is the line?
When do we continue or choose to end our son, Will’s, life?
Don’t judge. Please.
I teach my university students who engage in rhetorical analysis and writing, to stop and suspend their gut reaction, in order to more effectively deconstruct the argument.
When Will was born dead and remained dead and they didn’t know for how long he had been dead but were confident it was beyond the ethical time limit for saving a baby (yes, there are rules about this), there was no one to ask, “Should we continue life support efforts?” Because there was no one to ask, they continued to try and “save” him.
My husband was gone. A combat arms officer in the United States Army Reserves, post 9/11, he was on active duty. I left my 2nd period English class of Advanced English 8th graders who had been preparing for several weeks for their narrative historical research paper and presentations, and I never returned.
Under anesthesia, having an emergency C-Section surgery with my clothes, running watch, and wedding band still on, Jim gone, fighting post terrorism in the US, there was no one to ask, “Do you want us to proceed? Do you want us to continue life support efforts?” So, they “saved” him.
An Apgar score of zero, a crit of 16, a blood transfusion, 15 minutes or more with no oxygen, maximum resuscitation efforts, my 32 ½ week baby tried to breathe and “live.”
At this point they would have asked again, “Do you want us to continue resuscitation and life support efforts?”
An Apgar score of zero, a crit still under 40, another blood transfusions, 5 minutes more with no oxygen, maximum resuscitation efforts, my 32 ½ week baby “lived” and was given an Apgar of 1.
I want to reiterate that there was no one to answer so THEY answered the question. THEY proceeded.
Proceeded to “save” him. Doctors diagnose, practice, and treat, so the word “save” is a strong word, but it’s a word we throw around in the medical community. We too easily liken them to Gods. They are just human beings with a body of knowledge like you and me. They aren’t Gods.
Because he was named Will, with a will no one could understand or had ever reckoned with, he did live. He was “saved.” Give that boy some blood and oxygen, and he chose to check out this world, the world of the living. I think he really just wanted to meet the woman who had sang nursery rhymes to him for 7 months on her long commute from home to work or who had talked about Seamus Heany’s translation of Beowulf comparing Heaney’s Grendel to Gardner’s Grendel or reading student essay after student essay aloud while she graded.
When I was a still teaching, I remember a premature baby born by a fellow colleague. We would say in hushed voices in the teacher’s lounge that it would be better if the baby would die because he was so born so early that he would never “live” normally. What an arrogant and stupid statement that was since no one lives without accommodations.
I remember that we had the severe and profoundly disabled students in our building that year while the building they were typically housed in was under construction and only 2 of the 8 kids resided with their parents. The rest were in a local nursing home, which I visited later as a service project with a group of “normal” or neurotypical students. What we saw and experienced was horrible and hard to bear witness to. I prayed that I would never have a kid like Will, that I would never have to give my child away to a place like that.
When Will was born dead, my husband and I also said in hushed voices in a hospital room that it might be better if he died. An entire community was praying for him to live and we were wishing him dead. So, yes, we had THAT conversation. But, because he’s Will, with a will stronger than any human being I know, he lived. Which is why of course, I think he is not really human. He’s part angel and part boy.
And he has lived joyfully… yet painfully. And the pain now, unfortunately, more and more out matches the joy. His ability to do any thing that was once “normal” for him has been significantly reduced. And his “normal” might be your worst medical experience. Each growing year brings more and more spinal deformities, hip dysplasia, twisted limbs, shoulder, and wrist pain. Each season change in Indiana brings more respiratory infections and more lung damage. Each new procedure and treatment includes side affects that often require significant medical interventions.
Jim and I don’t want to see him take on more pain. And don’t give me some, “bear your cross” bullshit cliché here. I don’t want my son to die. We have spent every dollar we have, sacrificed our personal and professional lives and our health to keep him alive.
But, where does that end? For him? For us? It’s no-win situation. With no siblings and no one to care for him long term, how will he live? The idea of him being abused and in pain terrifies me far more than his death. Much more.
This topic and the story above have once again polarized the disability community and the non-disability community. Unless you have lived it, exactly what that mother lived, then guess what, YOU DON’T GET A SAY. You don’t get to have an opinion. You don’t get to weigh in.
I am sure my own hate mail will be coming in. But, my response is this:
Where were you? and What are you doing about it?
Have you asked a parent of a chronically ill child or child with severe medical needs if you can help? Not just once, but consistently. Have you asked how they are doing and meant it? Wanted the truth? Have you asked to be part of their caregiving village? Changed the shitty diapers, caught the puke, or held down bodies for painful procedures? Or even take the mother or father out so they could talk about the “it” they live? Have you helped raise awareness and advocate for adults with disabilities who have no one to look after them? Have you agreed to mentor and be part of an adult’s life? Have you helped shut down those institutions who continue to house individuals in subhuman living conditions?
Then, first, shame on you. And, second, you don’t get to have an opinion.
We think it’s okay to allow someone who is old to have a DNR and to “let go,” we thought it was okay during the Holocaust when individuals took their own lives to end their suffering at the hand of the Nazi regime, we accept a young person with brain cancer who wants to die her own way, on her own terms, and we are perfectly happy to tell people how far we would allow the medical community to intervene with us personally.
But bring a child into that equation, and suddenly, it’s wrong. It’s not okay.
Well, that thinking is not okay. It’s tough talk, people, about a tough situation. And, I don’t have an answer. I will fight until the very end for my son, and I am confident that fight will kill me before it does him. And that’s probably not the smart move, but it’s the only move I know. I’m “a hammer a God damn round peg into a square hoe until it kills me” kind of gal.
But, I do not judge this woman. She knows and loves her child more than you can ever understand. Leave it be. Turn your talk and your energy to something productive for a change.
Don’t legislate. Don’t designate. Don’t choose. Unless you have lived it, it ain’t your fight.
I am not saying that I don’t wish that Will was not ever born. But, I don’t wish that Will was born the way he was. I don’t wish that he had to suffer and you aren’t going to find any mother who is going to answer that question any differently. What I am saying is that I didn’t get to make that decision. It was made for me; for us.
And now this what is happening now with this case, people were trying to make that decision for that mother instead of with her.