Tuesday, September 23, 2008

Obsession, or Devotion?


Have you seen little man? No, not that piece of crap with Marlon and Shawn Wayans. I mean the documentary by Nicole Conn.

Nicole and her partner, Political Activist Gwen Baba, had been together seven years and had a daughter, Gabrielle. When they decide to have a second child, they opened all kinds of doors. Gwen had carried Gabrielle, and felt she was too old for another pregnancy. So, they decided to use a surrogate.

The pregnancy was fraught with problems and their son, Nicholas, was born 100 days early - a micro-premie. He weighed one pound. His heart was the size of a cashew.
Nicholas goes through medical procedure after medical procedure - because science and medicine "can" keep a fetus alive. But at what price do we hold onto life? Nicole is faced with the question that haunts in the night: When does caring become cruelty?
In the film, Nicole talks about timing. When they learned that the fetus was not growing properly, Gwen wanted to consider abortion. When the baby was born, Gwen was terrified of the efforts that would be required to keep this baby alive. But Nicole said that had Nicholas been their first child, she would have agreed with Gwen - but having their daughter, Gabrielle, changed that. She could not terminate the pregnancy, nor could she turn her back on what she termed "her son's need to be here."

Their marriage is pushed to the edge. How do they manage to keep some semblance of normal life for their daughter, while Nicole spends nearly all her time at the hospital with Nicholas? He was in the hospital for 158 days; when he came home, he was hooked to oxygen, and continued to require special attention. The question is raised, again and again, when is enough, enough?

The film disturbed me to my very core. Oh, man, is that an understatement. It caused me to look at all kinds of philosophical issues, and examine my beliefs deeply. This film was the darling of the GLBT Film Festivals, as well as several other independent festivals. So for me to say I didn't like it one bit will probably label me as homophobic; I am not. The "pro-life" crowd already hates me, because I believe in a woman's right to choose. But guess what? That means a woman can choose to have the child against medical advice, just as she can choose to abort.

In his first month of life, Nicholas endures four surgeries, two codes, chest compressions, ventilators, needles in every vein, collapsed lungs, excreting feces from his stomach which caused 8 centimeters to be removed from his intestines, blood transfusions, intubations, kidney failures, and a spinal tap. How much is too much? How much can a mother watch? Doctors often remark “they don’t feel pain the way we do.” But how do they know? Is it simply a defense against the indefensible? Can anyone define the line between caring and cruelty?

Nicholas survived, against all odds. Nicole and Gwen are still together, their family of four living happily in the Los Angeles area. Nicholas wears glasses, hearing aids, doesn't speak, has all kinds of challenges. He will need constant care for his entire life. The financial cost is huge. The emotional cost was huge. Nicole said the experience truly brought her to faith.

Faith in what? In a higher power? Is that higher power the NeoNatal Intensive Care Unit? Because if left to nature, this child would not have survived. He would not have been born. He would not exist.

Remember Terri Schiavo? Of course you do. Her parents set up a foundation that is “Helping Families Fight for Those Who Cannot Fight for Themselves”.
The mission of the Terri Schindler Schiavo Foundation is to develop a national network of resources and support for the medically-dependent, persons with disabilities, and the incapacitated who are in or potentially facing life-threatening situations. Promoting a Culture of Life, “Terri’s Foundation” embraces the true meaning of compassion by opposing the practice of euthanasia.
How much is too much? If someone is terminal, is it really compassionate to keep them alive by extraordinary means? How many of these self-declared compassionate people have no qualms about the death penalty? Hunting? War?

Nicholas lives with his mothers and sister. He is shown in the film laughing, smiling, loved. Yes. Both his mothers love him. Gwen came to terms with his survival, and loves him without regret. In Nicholas's case, science and medicine and Nicole's dogged determination to pull him through gave him life. Nicole attributes this all to God and to Nicholas's will to live, but I don't agree. His life is his because of science, because of her obsession. Don't mix god up with her selfish need to see this child come to be.

Yes. Selfish. That's how I saw her. Forgive me for my harsh judgment, but there it is. I saw her as selfish as Terri Schiavo's parents.

But Terri Schaivo's husband was equally selfish, as was Gwen Baba, who did not want to put Nicholas through that ordeal. Because it is impossible to NOT be selfish in these situations. Nobody has the ability to make an impartial decision - it is your child, your spouse, your partner, your family at risk and you cannot be impartial or dispassionate. And the decisions and choices are so incredibly personal that WE, on the outside, have no right to intervene or make laws or dictate.

I may not agree with your decision, but it is yours to make, yours to live with, yours to process. Just as my decisions are mine. Don't bring god's will into the mix. Not one of us has spoken to god directly - unless you're off your meds - and while we can ask for direction, and ask for guidance, at the end of the day the decision to pull the plug or not rests with an individual, a person. Not god.

35 comments:

Fran said...

Thoughtful post Jood. Those are the toughest decisions. I remember the Schiavo case brought me to the conclusion that I need my legal paperwork in order. We'd discussed doing the medical directive, but it;s not a happy topic & no one wants to spend time getting grim paperwork in order.... but if you don;t you could wind up with a Schiavo kind of case-- a friend in his 50's had a massive stroke, and his life partner of a decade, and a nurse, said he wanted quality of life, not just life... so after several brain surgeries, and the doctor's agreement that he may never walk again & can barely talk in one word sentences, she said he would not want to live that way, to pull the plug. Hi Mother stepped in & insisted she have power of attorney- by default, because they were not married he & the girlfriend, so she took over. Moved him back to her place in Ohio & as an 80 something is now caring for her 50 something child in a wheelchair. He won;t have a job, he can no longer speak eloquently as he had before, just moving around & going to the restroom is a huge deal.
Anyway, I have my medical directive together, and a copy on file @ my Doctor's office as well.
I'm ok with short term intervention, if there is real hope for recovery... but I dont want to waste away
in a nursing home hooked up to life support.
I want quality of life.
I'm sure it is a very difficult decision for a parent.
I had a friend who had an extreme preemie.....
the child is ok now, but will always be developmentally behind, and she is a million dollar baby. Many months in neo natal intensive care, just about every specialist imaginable.
They are poor folks & would be bankrupt if they had to cover the bill- even with insurance, as it topped out.

But I am with you- it is their choice,
I am happy that my Mom has her medical directive together too. She has so many chronic diseases, she does not want major medical intervention, or life support. She has lived 83 years now, and I understand, her desire to *go home* when it is time.

I am also of the mindset that major medical expenses, against all odds, takes away from the potential care of others who have better odds.

I liv in the only state in the Union that has a death with dignity law in place. It has to be terminal illness, and there are many safeguards in place` waiting period, psychological examination, confirmed diagnosis.
It always irked me that people had their beloved pets put to rest out of compassion, but grandma had to tough it out.

Under this law, people again have the choice-- if you want to struggle through a terminal illness to the end, you can, if you want to opt out, you can.

But at what cost, both financially, and in a difficult life?

No I don't think you are a homophobe-- you are not making this statement saying gay couples have no right to have children, you are addressing a high risk pregnancy, and child with disabilities` with the implication you feel the same way regardless of the gender make up of the parents.

Dean Wormer said...

I've always believed there are worse things than dying.

It seems to me that if a lot of people and governments shared that view the world would be a much better place.

Focusing on the infinite somehow leads people to ignore the finite.

DCup said...

I love your last paragraph. I would defend any woman's right to choose. Choose to carry to term (whatever that is) or to terminate. I will not live with the results of either decision so why in the hell should I think I should have a say. I realize that's a very simple-minded approach to this discussion, but to me, the simplicity is necessary. I would not dream of equivocating for someone else - the will, the moral judgement, etc.

Great, great post, Dive Jood.

Bubs said...

Excellent post about a heartbreaking situation

Randal Graves said...

What you and dean said.

dguzman said...

Great post, Jood! I too would support this couple's right to keep the child, no matter what--if that was their choice. But I would never be strong enough to do what they did. And I'm glad I would have the choice to terminate, if that's what I decided was best.

It's a tough issue; the thing is that each woman should get to make her own choice. Let's hope it stays that way, legally.

DivaJood said...

Fran, I think what really upsets me is that I got so damned opinionated when I watched the film. For me, it was so annoying to watch and listen to Nicole as she equated each gesture, each act as something noble! It wasn't noble, or heroic. It was obsession. And I felt like a voyeuer, spying on something so intimate and personal. And I felt manipulated in the worst possible way. It was later, after sitting with the philosophical issues, that I realized she was challenging each of us to examine what choice actually means. Your friend's story is another example - his partner and his choice made irrelevant by his mother - the conflict is horrific. What is right? Or is right/wrong a real issue here? And it has nothing to do with gay/straight/white/black/rich/poor. It is simply human choices.

Dean, you stated this so well - and it is true: we forget to see the here and now.

DCup, it's even in making the decision for ourselves that so many of us have trouble. I don't have a prime directive in place yet, because I don't know how my children would feel. And I don't ask them. But for me, it is quality of life that matters.

Bubs, back to this film - they show this child as well loved; handicapped, but happy. Laughing. Loved. They seem happy. I don't have answers.

Randal, Dean said it well.

DGuzman, I was absolutely struck dumb by my realization that being pro-choice meant that a choice would be made. It is our right to choose, whatever that may be. And I hope it remains so as well.

an average patriot said...

That really is a tough question. I have watched relatives being taken a piece at a time until they inevitably die. This is a multifaceted issue so I will only say who are you making the decisions for them or you?

Mary Ellen said...

Diva- Wow...so many issues are in this post!

My opinion may be different from yours because of my faith in God. You said, "His life is his because of her obsession. Don't mix god up with her selfish need to see this child come to be."

Well, what you may see as obsession, others may see as unfailing love for a child. They didn't look at this child as a fetus, but as a human being. Like it or not, those who believe in God as the higher power or the creator of human life don't credit "science" with is initial existence, but God Himself. Yes, science did help keep him alive, but where did that science come from? It came from the mind of a human created by God, in the opinion of those with faith.

Who are we to judge what is obsession and what is love?

Oh..and I've never been on meds which means I haven't gone off on them, and yet I do talk to God. That is my faith. When I pray, I talk to Him. When I go to the Adoration Chapel, I am in His Presence. That is my faith, but I don't think I'm crazy because of it. I think that those who don't believe in God tend to limit Him to human form and capabilities instead of looking beyond that. Of course, discussing that would go well beyond what is meant in this post.

So, this child, although going through the very difficult months of medical interventions to keep him alive is now smiling and happy and loved...why does that make you angry? You may think his quality of life is not good, but obviously, he is happy. I can think of many people who started out with a good, healthy quality of life and they squandered it later.

I guess we just have different perspectives on this and I respect your opinions. Just putting forth another side to the issue.

Hope this doesn't get me kicked off your ticket. ;-)

Sewmouse said...

Your last paragraph gave me chills. It's what I want to say to my anti-choice relatives but haven't had the words to say it.

Thank you.

Go Cubs!

Dr. Monkey Von Monkerstein said...

Well said my friend.

DivaJood said...

Ah, Mary Ellen, when I said "talk to god" I meant as in having hallucinations (God told me to go shoot up that Abortion Clinic.) I am far from being an atheist, I also believe in god, a higher power - without that, I would not have been able to get sober.

As for Nicole and Gwen, they were opposed about what to do; Gwen wanted to abort after they learned the fetus was not growing properly. Nicole did not. Gwen did not want to put him on life support. Nicole was adamant he go on it - and it wasn't that Gwen did not love him, it was that she was concerned about what was and what would be. It almost ended their marriage.

And Nicole raises the issue of obsession in the film. She herself talked about it; the fine line between a mother's love and obsession. I understand it well, as I have two kids and a grandchild.

But ultimately, left to god alone, this child would not have come to existance: no harvested eggs, no surrogate, no invitro, no life support.

You are not kicked off the ticket. I am busy decorating the West Wing. See my post below.

Sewmouse, really, who are we to decide for anyone else what is right, what is wrong, for them? And then ultimately, if the choice made is different than what we would choose, we cannot tell them they are wrong.

Go Cubs.

T.Allen-Mercado said...

I applaud your honesty. This topic is one of many along similar veins of discussions I've shared with my husband and my grandma. The only 2 people who will still respect me in the morning. :P

I'm admittedly selfish in ways that aren't always easy to say or hear. It isn't my selfishness that creates the difficulty but the oft-brutal honesty.

I completely understand the emotions you describe here and the ambivalence and even anger at those who you agree with and those with whom you do not.

These observations of the human condition are what make me appreciate small children so much. Without justification or rationalization-they do what they do simply because they "wanna". Honesty at its best.

HelenWheels said...

DivaJood, great post. I know a lot about this story personally because I know Nicole and designed a good deal of the Little Man movie website. The marriage with Gwen did end awhile ago. Probably off topic, but Nicole is a really delightful and generous person.

I was floored by the film too - saw it AFTER I finished working on the site.

I see what you mean by the selfish factor - but aren't we all when we are adamant about saving a life? I tend to be that way with the dogs I rescue. At what point do you give up? I don't know the correct answer to that, for sure.

I understand your view as it relates to Schiavo... and I haven't met Nicolas in person so I can't say whether or not he's "happy." I have met Nicole only via email & phone, but am a member of a large online group she posts to and I can attest that she's a wonderful person.

I only feel free to mention the divorce because she offered that up to the group so I assume that means it's no secret.

The end result is that yes, she has a lifetime now of taking care of Nicolas' many needs. As of the time I was done with the site - this must be nearly 3 years ago now? He was around 4 years old and still had to be attended to nearly 24/7. I honestly don't know how she does it... how selfish is that, really? I can't imagine devoting my life to the care of someone else.

I can't really judge this one. I'm a pro-choice athiest, for what it's worth, but I can't see what Nicole decided to do as anything less than noble.

Am I selfish when I do everything I can to stop a dog from dying of distemper even when all the vets tell me it's not worth it? I don't think so, unless the suffering of the dog is too great. Like I said, I don't know how much Nicolas "suffers" - or how great his quality of life is, and I'd have to know that to understand how rational or irrational Nicole's choice was.

She now has sole responsibility for Nicoloas, BTW...

okjimm said...

What a stunning piece of writing.

//at the end of the day the decision to pull the plug or not rests with an individual, a person.//

I had to share that decision, ten years ago, about our father. He had been in ICU for 3 months; a series of heart attacks, stroke, passing kidney stones..... at 2:30am the doctor comes to tell us, in the waiting room, that he needs a major heart operation, and even that only held a %20 success rate,with severe 'quality of life issues' if he survived. He couldn't take any more pain. My mother couldn't. We couldn't. We said no. He died ten days later.

This was great stuff, Jood.

Dianne said...

Noble vs. Selfish

I have such conflicted feelings about that. I watched the Schiavo case closely and always felt the parents just did not want to let go and didn't care who they hurt in the process - including Terry. I would hope to not be that way were it my child.

I don't know if this is getting off topic - it feels connected to me. There is this "something" going on this country - maybe a backlash to feminism, maybe working Moms being sick of doing it all - "something" - that is turning Motherhood into a cult. My DIL and a friend of hers are torturing their bodies to have a child. 500,000 children in foster care - why wouldn't adopting one be as wonderful. I suppose I have no right since I did have a child of my own, I did experience childbirth. I get so conflicted. They have the look of zealots to me and it worries me - for them and for my son.

To bring this back to your post and I hope I didn't stray too much. I have not seen the film so I won't voice an opinion on this particular case but I do believe there are many who confuse being a good mother (or father) with their own selfish need to be feel invincible, immortal.

DivaJood said...

t.allen, I think we are all selfish by necessity. It's partly how we survive as a species. The degree, though; or selfishness under the guise of altruism - or hypocrisy - I dunno. NO answers from me. But I agree, small children are completely honest about it.

Helen, I think I remember you said you'd worked on this film's website a while ago - at any rate, the website is terrific. And thanks for the insight into Nicole. I'm sure she's lovely. But really, I think her devotion to Nicholas might be the cause of her marriage ending.

Okjimm, it's a terribly difficult decision. Really. My mother had a DNR and a living will; she had terminal cancer. She died at home. And I need to put one in place; as I told Fran, I don't have one yet - sheer procrastination on my part, not wanting to make the decision in advance. Selfish of me, really.

Dianne, you're right on point here. What is wrong with adoption? Why do invitro, take drugs with questionable side-effects, use a surrogate? The so-called miracle of birth (akin to shitting a watermelon) is nothing compared to the actual miracle of watching a child grow, think, learn. But you've hit on an issue that is inherent in this: if they wanted a second child so badly, what's wrong with adoption?

Border Explorer said...

Stellar post, Diva! And such worthy comments.

When does an individual's right to decide yield to the common good? At the very least it should incorporate a thought toward the good of all.

When every child in the world receives basic nutrition, neonatal care, immunizations, then I might feel better about giving extraordinary support to cases of dire special need like this one. We have to have a wider view and see beyond my child (or my pet, for that matter).

susan said...

I'll line up with the rest to say great post, Jood! I think Dean Wormer and BE have most closely voiced my opinion on the matter.

Maybe some people are born to teach other people about quality of life.

FranIAm said...

What a post - late to it though I am.

Being Catholic and being pro-life (in the fullest sense of the word) and being pro-choice as well (they are not incompatible) has forced me to spend the past 18 years pondering this. (In a few days I will note the day when I returned to church... My first discussion with God - "About this abortion thing...")

And I continue to explore, wrestle, pray, ponder, study and talk.

You note the disgraceful Schiavo story- God have mercy. That is another topic for another day for me - but it was if nothing else a very dark day for the church.

As is the way other words have been co-opted... For me being pro-life it means that I can choose to not have an abortion. It also means that I have a lot of other responsibility to the world around me if I am pro-life.

That responsibility extends to health care, housing, food and nutrition, basic living needs for all, war, death penalty, torture, greed... So I am not uncomfortable with being pro-life.

I am always uncomfortable with what that means in our culture, which is very different.

Ultimately this sounds like a deeply challenging film - and I both really want to see it and not at once.

I think you express something really important beyond the main points of what this film itself means in regards to the life of this child and the two moms, not to mention the other child. How she must have to cope with all around her!

What you express is that if we are to really know what we think and believe, which is generally not a one stop destination if we are to ever learn and grow, it means facing many difficult things.

Things that would be much easier to not think about. Ever.

So that you felt so opinionated and had so many feelings, that you wrote this post just tells me that you are a person of real integrity- willing to face, albeit with discomfort at times, your real feelings.


Thank you for this post.

Utah Savage said...

Great Post Diva. Like Randal I agree with you and Dean Wormer. I am firmly on the side of allowing death to be the natural solution when death wants his way with you. And to my way of thought god has nothing to do with putting a fetus through that kind of hell. But I'm pretty clod blooded for most folks taste.

Mary Ellen said...

Breaking News: John McCain suspends his campaign. I have it on both my blogs if any one is interested.

DivaJood said...

Border, //When every child in the world receives basic nutrition, neonatal care, immunizations, then I might feel better about giving extraordinary support to cases of dire special need like this one.// Oh, sister, you have truly nailed it with this comment. I could not agree more.

Susan, I am in awe of the comments, the thoughtful discussion on this subject. But really, what Border just said cuts to the heart of the matter: when every child can receive basic treatment, well, then let's talk about the extreme.

FranIAm, I just saw "Burn After Reading" - your comment about how life would be so much easier if we just did not have to think made me laugh, because that's so much of what the BAR film speaks to. How easy a thoughtless life seems to be. Anyway.

Utah, I hope you meant cold blodded, rather than clod blodded. But I'm with you on this. I don't think a new-born should have been put through this just to feed one person's ego.

Mary Ellen, McCain's gesture smells of being a "Hail Mary" pass - and I don't believe it will work to his advantage. When George Will, the conservative's conservative, says that McCain is absolutely UNqualified to be President, you need to take a step back and look at this.

D.K. Raed said...

A thorny issue for sure. I'm glad these things are not solely up to me because I tend to come down against too much & repeated extraordinary medical care. And I'm sorry but I simply don't believe that kind of pain cannot be felt or remembered by an infant. I do not think I could've watched that film all the way through.

ps, I too am sometimes amazed at my own opinions. But as long as they are honest opinions & if I remain capable of truly hearing other opinions, possibly even allowing myself to modify my own as a result, then I am fine. And so are you!

Pagan Sphinx said...

I think I see it your way, almost for sure. But I'd like to see the film before commenting thoroughly.

HelenWheels said...

I have to say, I went into that film - even after doing the website - without much expectation of it being so good. I think it's moving and really amazingly well done. I'm sure that part of it IS because Nicole is a film maker by profession. But I think it is worth seeing.

Obviously, it sparked something in DivaJood - and me as well. So I'd say go see it. It really is a good film no matter what your opinion going in/out of it.

Blueberry said...

Excellent post. I haven't seen the film, but given your description it sounds like I would likely react the way you did. Also, like someone mentioned, if you want another child badly enough to use a third party's body to produce it, why not adopt? Is there some reason the child *has* to have some of your DNA, and therefore you simply *must* bring another person into this world where there are so many already in need of love? Is that something that makes boosts one's ego? I will never understand that one.

DivaJood said...

DK, there's a line that I quoted which says that these micro-premies don't feel pain the way we do - it reminds me of a woman I knew when I lived in Israel. She was from South Africa, and she was a nurse. She was white, and she used to work in an African hospital (as opposed to a white hospital). She said they never used anesthetic on the blacks, because they don't feel pain the way we do. Uh-huh. I had to walk away.

Pagan, it is well worth seeing, but I found myself angry through all of it. But, as Helen says, Nicole IS a filmmaker, she knew what she was doing.

Helen, exactly.

Blueberry, it was me who said why not adopt? Which is why I think that Nicole's ego played such an insane part of this.

Spartacus said...

Wow Diva.. I wish I had read this sooner. Been really busy lately. My thought on this is that we all have those moments where we ask ourselves "what would I do in that situation" and keep it private, acknowledging the fact that they are, thankfully not in that situation.

Then there are those who feel that their sense of what should be done is what everyone should do, and when it comes to a woman's reproductive rights, try to legislate, cajole, even murder people to see that their will is done.

I know which side of the aisle you sit on in this situation and as much as these two women appalled you, thankfully, you understand that it was their burden to carry, your opinion not withstanding. Great post.

DivaJood said...

Spartacus, it was a chore to sit through the entire film at times. I felt like it was whiny. I hate whiners, unless, of course, that I'm the one doing the whining and then I'm perfectly justified. (hehehe)

But it really was a challenge.

Liberality said...

Whoa, those are some heavy questions. I didn't read everyone else's responses yet so if I repeat someone else too bad. These are very good questions that need to be answered and if it were up to me, I would have aborted that baby. Cold hearted, cruel? No I answer, I am compassionate and not selfish. It is selfish to expect other beings to suffer because I don't want to or won't let go.

My hubby and I go through this trauma every time one of our herd of animals gets very old or very ill. We currently have 10 dogs and cats--most of them throw-a-ways that we have adopted. He wants to do everything to save them and I want to let them go when it gets to be too much. I am ready to let go when they have to suffer too much pain. I know animals are not considered to be on the same plane as humans (but I disagree there too). And yes, that baby did suffer pain, lots and lots of it. It was SELFISHNESS that the mother would not let go.

jazzelwood said...
This comment has been removed by the author.
Studio2grl said...

I agree 100% with your review of "little man." Thank you for saying it much more eloquently than I ever could.

OneDayAtATime said...

Being a mother of a child who spent 3.5 months in the NICU/CVICU I can say that I personally believe God has had his hand in deciding the fate of my daughter.
We were told at 10 weeks Gestation that she was possibly not viable. We continued to 33 weeks when I got too large and was showing signs of rupturing.
It was a good thing that she was born early because there was a delay in moving patients from & she wouldn't have been moved as quickly as she was. Was the early delivery my choice?? Nope - I believe!
My daughters lung collapsed, an angel nurse happened to walk by when she was starting to turn blue & called a code blue while starting the rival - God's Will.
Her shunt snapped shut & there was a "discussion" occuring about what should happen. Our angel nurse once again was happening to walk by as her regular nurse was in shock. Why?? God's Will.
Believe or don't believe, that is up to you. Continue or don't continue. That is up to you.
Judge you should not, for you will never walk in my shoes or in the shoes of others & will never be able to truely understand.
This movi should be watched by EVER medical staff & family member of someone that ends up in the NICU.
Asking for help is difficult & sometimes the only one you can turn to is God.

Roni Joseph said...

In "little Man", Nicole Conn mentions that the state of California pays for ALL of Nicholas' medical bills. So I have to wonder, if Conn had to cover those bills, would things have been different? Would she have signed a DNR? The state paying for the medical bills obviously made it easier to make this documentary.