Christian woman: “She’s pulled the plug on her own son, whom I love and cared for. How do I deal with my anger?”

by John Shore on March 29, 2012 in Dear John · 108 comments

Got this in last night:

Dear John,

I’m having a spiritual problem right now that I hope you can advise me on.

Through a community services agency, our family does respite care for Tim, a boy with special needs. Respite care means that we take care of Tim so that his mom can work, take a break, and generally do what she needs to. Tim has his own room in our house, equipped with a hospital bed and everything needed for his proper care. For the past ten years Tim has been at our house more often than he has at his mom’s.

My family loves Tim more than I can possibly say. He’s been as much a part of our family, as much my little brother, as if he were my flesh and blood. And there’s no doubt that our care and love for Tim has extended his life. Everyone tells us that it’s because of us that he has lived as long as he has. Tim was expected to die one year after he came into our lives, when he was nine years old. He is now eighteen.

Timmy is such a light, and has taught me so much about love and serving God through serving others. I wish the whole world could learn what we have learned from knowing, caring for, and loving this sweet child. He has taught me the very meaning of unconditional love, and I think it’s as close as I’ll get to seeing Jesus until it’s time for me to go meet Him myself.

John, last Friday Tim became seriously ill, and was taken to the hospital. After high doses of antibiotics he started pulling through, but then his body temperature and blood pressure dropped.

Suddenly his mother decided to stop all medical care for Tim, including his feeding tube and i.v. fluids.

It’s about Tim’s mother that I’m writing you. I don’t know what to do with my anger toward her.

Tim’s mother is an alcoholic who has always neglected Tim. Basically, her main interest in Tim lies in the checks he gets for social security and child support, which she uses to support her habits, which include gambling. (And smoking, which has been the cause of some real grief in our family, because even with all of Tim’s health problems, his mother and her boyfriend smoke in their house, even when Tim is there.)

The bottom line is that we’ve known for years that his mother wants Tim to die. She likes the money he brings, but other than that it’s clear she has no use for him. But Tim has plugged on anyway, thanks to the quality of care he gets at our house and the prayers of so many who love him.

Though for years we’ve begged the social services agency we work with to do something about Tim’s mother’s neglect of him, they’ve always kept their distance, always said they say they can’t get involved, because of a mother’s rights. This has always been so angering to me. What about a child’s right to a decent life? How does that not count for anything?

For the past few months we have pleaded with Tim’s mother to take him to the doctor, since we knew he was getting worse. But all along she refused, until last week, when he finally got so bad he was taken to the hospital, where he was diagnosed with aspiration pneumonia.

And now it seems she’s taken advantage of what’s happened to finally get her wish for Tim’s demise. Because of her decision to cease all efforts to heal him, they’re now only giving Tim “comfort care,” including morphine, which is a respiratory suppressant. Without his tube feedings and fluids, it will only be a few more days before he passes.

My dad is a registered nurse, and after speaking with the doctors and nurses, he knows Tim had a fighting chance if Tim’s mother had continued his feedings and i.v. fluids.

Tim is still alert; he smiles and laughs when my parents or I am there. If once this week while talking about Tim I have used, or thought of, the name Terri Schiavo, I’ve done so twenty times.

On Friday, before he got so sick and his mother made her choice, I told Tim that he and I had a date for the Final Four. (Timmy loves basketball and fusses and quarrels at the TV when his team isn’t winning.) He smiled and laughed. I don’t see how any mother could take such joy from their own child and not fight while her child still has a chance to live.

How does a mother do this to her child? That’s what I’m really struggling with, John. I thought a mother’s love for her child was supposed to be the purest form of love next to the love of God and Christ Jesus.

And how do I keep from judging this woman? I know I’m judging her, and I’m so angry. I want to fight for this child, but there’s nothing I can do because he’s not my flesh and blood. How do I keep from hating his mother?

You’re really the only person I thought I could reach out to for a Christian perspective. I’ve prayed and asked God to either be merciful and take Tim home, or to intervene on Tim’s behalf. Am I praying the right thing? I’d really like to ask God to smite Tim’s mother down in her path, but I doubt He would be really happy with me . . . He’s probably not happy with me for just typing that.

Could you give me some insights, or at least pray for me?

Well, first of all, of course you’re going to judge the poor boy’s mother. Wrong is wrong. You’re not judging her soul; you’re judging her actions. You get to do that: you get to call wrong wrong. You’re supposed to do that. We all are. Why else have a conscience?

And you can right away jettison the weirdly enduring myth that a mother’s love for her child is necessarily sublime and wonderful and cosmically inspired. It’s not. Most mothers love their children in that special, super-intense way, yes. But most is a very long way from all. If I had a nickle for every mother I’ve known who neglected, beat, abandoned, emotionally tortured, or in any other way basically did everything she could to trash the life of her child, I’d buy Disneyland and Disney World—and let every kid in for free forever.

It’s so sweet that you believe that, as you so well put it, “a mother’s love for her child is supposed to be the purest form of love next to the love of God and Christ Jesus.” Sweet, but, alas, also wrong. It’s terrible that your first experience with Deplorable Moms is that of poor Tim. That’s like having the first spider you ever see be a nuked-up tarantula. But, as I’m sure you know, Tim’s won’t be the last reprehensible mother you’ll ever wish you never met.

In so many ways this world really is a vale of tears. And that’s in no small part due to the endless numbers of mothers who are no more suited for motherhood than I am for piloting a space shuttle.

And yes, in praying and asking God to either be merciful and take Tim home, or to intervene on Tim’s behalf, you have prayed exactly the right prayer. What else can you pray for? Those are your two good options. That prayer of yours nails it.

As to your most pressing concern, which is the anger you are now harboring towards Tim’s mother. It’s really good that you’re already focused on the (God knows) sometimes unclear truth that hatred is, in fact, your greatest personal enemy. Hatred kills. And it mostly kills—however slowly, however corrosively—those who hate. So you’re wise to already be thinking of how to process your feelings toward Tim’s mom. No use letting the [expletive deleted] take you out along with her son.

The type of anger this terrible series of events has occasioned in you is the most acute emotional pain there is. Someone you dearly love has become the ultimate victim of someone else—and there is nothing that you can do about it. That’s the worst. If you are the one being victimized, at least you have some control over what’s going on; at least you can in some way control or measure your response to what’s happening: you’re engaged in that way. But when you are forced to do nothing but witness harm being done to a loved one?

Man, that is one difficult place to be.

But look who I’m telling.

So what I think it’s important to understand is that the way the anger that you are now experiencing feels to you is as nothing so much as it is anguish. The root of our word anger is, in fact, the Old Norse word angr, which means anguish, distress, grief, sorrow, affliction. And I wasn’t surprise to discover that’s so, because in its purest, most concentrated form—which is to say when it’s attended by perfect helplessness—that’s what anger is: anguish.

You are angry, yes. But mostly you’re anguished.

And now we come to the part where it’s really, really good that you’re Christian. Because if you believe that the whole point of your life is to as fully as possible identify with Christ—which is to say as fully as possible have your conscientiousness replaced, or inhabited, by Christ’s—then you actually and truly need this pain.

And let me hasten to add that I know that’s a fairly repulsive thing to hear: when you’re suffering, there’s nothing like, “But this is a good thing!” to make you want to punch somebody’s lights out. But for pain as deep and hard and real as yours, it’s … Christ time.

So much of Christianity is about peace, joy, happiness, wholesomeness, love, etc. And we all love that stuff. Bunnies! Sweets! Colored eggs for some reason! All great.

But the other side of that reality—the opposite of all that fulfilling, happy light—is shattered, ugly darkness.

Christ’s life was definitely a heavenly miracle. But just as definitely his death was an earthly horror. And if you want to really know Christ, you’ve got to really know both.

Don’t think of Tim’s mother as an evil murdering witch who needs to die. Think of her as the vehicle by which you’ve been driven directly to the state of knowing more about the pain and suffering of Christ than probably God himself wishes anyone ever had to know.

Bottom line: you can’t know Christ if you don’t know profound, dogged emotional pain. And I’m sure this isn’t the first emotional trauma of your life—I mean, obviously. But I’ll bet it’s as bad as any pain/anger/despair you’ve ever felt; this one is certain to be with you for life. It’s bad enough for you to feel as if you yourself have been rudely forced down onto, and then nailed to, a cross. Like you’ve had great strips of flesh whipped off your bones. Like you’ve had jabbed into your cut and bleeding mouth a fetid rag soaked in vinegar and bile.

Like you’ve been, in a word, massacred. Sacrificed on the unholy temple of animal ignorance.

So my advice is to run toward, and not away, from your infinitely righteous anger. Claim your pain. You’re sad; you’re angry; you’re suffering; you’ve had to stand by and watch someone you love essentially be murdered by the one person on earth who should be most driven to protect them.

You were God to Tim’s Christ.

Get some serious time alone, I say, and close your eyes. In your mind, fall slowly backwards into the darkness. Come to the moment where finally, inevitably, you feel the wooden plank pressed against your spine.

And then spread out your arms. Feel them being attached to the cross beam.

Hold that sacred pose.

And there you will be.

And there, inhabiting every last cell in your body, will be Jesus Christ.

* * * * *

So the deal is, anger is like ignited rocket fuel. If that lit fuel is in a rocket, and it’s going to help that rocket do whatever it’s supposed to, that’s great. But if when ignited that fuel is locked up in storage containers, or in a rocket that’s broken, that’s extremely ungreat.

Your rocket fuel has been lit. And for awhile that’s going to force upon you an implosion—and using Christ’s sacrifice to hold the magnitude of that implosion is real and good. But once that phase of your processing has has passed or waned a bit, you might very well find yourself wanting to do something to balance out the injustice to which you were made an unwilling participant.

Track in yourself that feeling. If after a time—or right away, for that matter—you find yourself thinking in terms of at least attempting to make right what in Tim’s case went so very, very wrong, do. Get busy. Feel the truth of the fact that you are empowered to help change the system. Something broke somewhere, didn’t it? There is deeply embedded in child welfare and related services a resistance to compromising or violating parents’ rights that entirely too often causes utter failure to protect our most vulnerable children. Anyone involved in this sort of work has all kinds of stories about instances in which, out of the fear of being sued, basically, already-strapped-for-funds child welfare people kept their distance while the parents of some poor kid continued to exact upon that kid more harm than any sane person could stand to be aware of.

That [expletive deleted] happens all the time. (And it’s certainly not any particular fault of child welfare agencies, who will get sued, and who are—to what should be our national shame—perpetually working on half a frayed shoestring.) Maybe you can help change that system. You’re in the system, yes? So you have that advantage. Start where you are; go up the food chain; find the weakest or broken link in that chain; and get busy.

Maybe there are care standards that can be defined and qualified in such a way that they can then be codified into some sort of enforceable evaluative processes. Maybe special legal protections can be formulated and then applied to child welfare cases that meet certain conditions and standards. Maybe you can help figure out a way to get child welfare agencies funded in a way that doesn’t make clear to the world that Americans really don’t care about their poorest and most vulnerable children. Talk about doing Jesus’ work in the world.

So, in summary, relative to this unbelievably awful place you’ve found yourself: Go Christ inside, and then go Christ outside.

And know that we’re with you, sister.

Please keep us up. Love to you.


 

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{ 108 comments… read them below or add one }

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Laura Gossert via Facebook March 29, 2012 at 8:19 pm

I just read through many of the comments and one thing stands out for me because my mother just passed away in January through Hospice care. The letter writer seems very upset about the iv for morphone being taken out and I have to wonder if they are giving him a liquid form of morphine under the tounge (which is what we did for my mom), to keep his pain controlled. I at least hope that is the case.

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Robert March 29, 2012 at 6:50 pm

Hi John. I thought your response to an unholy situation was spot on. In the Upanisa Sutta, the Buddha gives a discourse on dependent arising. In it he notes that, “Joy has a dependent condition. What is that dependent condition? The answer, monks, should be faith.
“Faith also has a dependent condition. What is that dependent condition? The answer, monks, should be suffering.”
Don’t turn away, don’t push it away, and don’t fight it. Just be with it, in faith.

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Andrew Raymond March 29, 2012 at 5:00 pm

Original writer, bless you for being there for Tim as long as you have. I interact daily with a LOT of single mothers with autistic children who display amazing love for them. You have clearly had that for Tim, which is an even deeper beauty.

I can’t even begin to comprehend the full depth of the anguish you must be experiencing. In my autism activism we see similar cases ALL too often, and even THAT is heartbreaking to me.

John, I love your dream for the writer’s direction toward action. Writer, I would love to see you take that path. You have already displayed amazing gifts of faith and compassion.

Peace and the love of Christ upon you both!

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Original Letter Writer March 29, 2012 at 5:59 pm

Andrew,

Thank you for your kind words. I couldn’t love Tim any more if he were my own child. I pray that when it is all said and done that I can find the strength to move towards action.

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Gina Cirelli March 29, 2012 at 4:33 pm

The people that I was adopted by were no more fit to be parents “than I am for piloting a space shuttle”. They were alcoholics and narcissists, but they managed to make a decent sum of money. Catholic Charities didn’t even do a background check, as my aunt didn’t even know they were thinking of adopting and one day they showed up with me. Needless to say, I, who had become an only child, was horribly neglected and emotionally abused.

I know this has nothing really to do with this post, and I apologize. This post just brought a tidal wave of anger through me, as I was given a second chance to have good parents, but hey, the Catholic church gave away babies in those days. Anger, so much anger. On bad days I want to sue, and on good days I thank God for the opportunities that a middle-class upbringing has brought me in spite of all the pain I had to endure.

I guess what I really should have done was write a letter to you myself, John. My point is, yes, I agree, there are some really sucky parents out there. And then there are people who have sucky parents thrust upon them by incompetent churches.

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John Shore March 29, 2012 at 4:52 pm

Whoa, Gina. Man, there’s such a clear tone that happens when people are speaking the full truth directly from their hearts. Bless you, girl.

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Andrew Raymond March 29, 2012 at 5:02 pm

Agreed, John

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LSS March 29, 2012 at 3:42 pm

My previous comment was so critical but i do like the part where you encourage her to change the system. I hope it’s NOT too late for this kid and there can be Guardian ad Litem (i can’t believe the family member that’s a medical person didn’t know about that) but either way, changing the system for the next kid whose parents want him dead (and there will be)… That is a really worthwhile thing to do.

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Original Letter Writer March 29, 2012 at 5:56 pm

LSS,

No, we did not know of the guardian ad litem. My father’s specialty does not often come into contact with issues that require the services of a guardian ad litem. Another reason I am so angry with the “system”, meaning the social services system, is that I believe they should have suggested such a response, instead of taking the hands-off approach. The system, as John points out, clearly needs to be changed.

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buckeyebadger March 29, 2012 at 3:34 pm

Tim has been blessed by and been a blessing to his “adopted family”, and this sad and painful end to his journey is heartbreaking for me. I am the mother of an adopted, disabled son, and have sat in terror at his bedside before impending surgeries three times (with another due next month). I love him with all my heart and soul, and it is hard for me to sympathize with a mother who would ignore the chances she had early on in Tim’s latest illness to intervene, no matter what her circumstances. Of course we have only one side, but on that side is amazing love. Your words, John, especially about closing her eyes, and taking on the pain and anguish as Christ did on the cross, took my breath away. May Tim’s “sister” and her family find the comfort they need in your words and in Christ. Hopefully they will find ways to make Tim’s life have even more meaning in the days ahead as they work to change things for other children like him. And they should carry with them in those difficult days ahead not only the bittersweet memories of their time with Tim, but the knowledge that their “brother/son” saw Christ every day in their eyes, their hearts, and in their love and care for him, and now will soon rest comfortably in His arms.

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Bethany Jean March 29, 2012 at 3:07 pm

I would hope that someone pulls the plug on me when it is time. The mom may not be the monster that some believe her to be. She never asked to have a profoundly disabled son. His birth and diagnosis was a death of a sort to her dreams of a normal healthy child. Perhaps her drinking is the way she chose to deal with her own disappointment. That doesn’t excuse it but it might be an explanation.

I had two children die shortly after birth. I still mourn them. What is worse is that the reason for their deaths is because of child abuse done to me. I retreated into myself after their deaths and stayed there for a very long time. Finally I began to understand that my babies have a much better life in Heaven than they ever would have had with me.

Tim will have a better life too. God could heal him 100% if that is HIS WILL for Tim but maybe God wants to bring him home where he will be happier than ever before. Maybe Tim has already done what God sent him here to do. Tim’s life is ultimately in God’s Hands alone. I can completely imagine hearing God saying to Tim “Welcome home son. Thanks for doing such a great job for Me”

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andie March 29, 2012 at 3:33 pm

I, too, have instructed those who love me to unplug me when there’s very little or no chance of recovery. But it’s clear from the letter and the olw’s comment a few inches below this one that that is not Tim’s situation. This young man is not comatose, braindead, or riddled with cancer. He has aspiration pneumonia. That sh*t doesn’t have to be fatal if you keep nourishing and treating the patient. Maybe it is spiritually his so-called “time”, but it is not medically the end of the story. Or at least it wasn’t until the mother decided he wasn’t worth keeping around. In conclusion: nice fuzzy warm thoughts you have there, but I think the olw would disagree with you. I am sorry to read of the loss of your children and glad that you’ve achieved some peace. May God bless you in the future.

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Original Letter Writer March 29, 2012 at 5:58 pm

Andie,

Your comments bring up a point that so many seem to be missing. He was responding to the antibiotics well until his blood pressure dropped. That was when his mother made the decision to stop his feedings and all i.v. fluids. He might have recovered. That’s what makes it all so hard to bear.

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DJ Boatright via Facebook March 29, 2012 at 3:05 pm

Amazing. I needed to read this today.

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Robert Baden via Facebook March 29, 2012 at 2:57 pm

I wonder how long the letter writer has known this family. Did the mother’s addiction start after her child was born? Some people crack under the strain of caring for an ill relative.

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Valerie Puryear via Facebook March 29, 2012 at 2:46 pm

Thank you John, the letter made me want to go out and wrap my hands around that mother’s neck Your reply made me think..and fall back.

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Original Letter Writer March 29, 2012 at 2:42 pm

John,

Thanks for posting your response. It brought so much comfort to our family. I read the comments. It pained and angered me to read some of the comments. I wish I could answer each one, but as this is done anonymously, I can’t. It would be different for me if his mother was even mourning the impending death of her son, but as she told one of us in a recent visit to the hospital “I’m fine with it.”

To clear up some of the medical information, Tim has been on a feeding tube for over five years, and has tolerated the feedings well, with no other previous symptoms of pneumonia. His coughing has progressed in recent months. We have begged his mother on numerous occasions to seek medical treatment. On one occasion in the fall, we even put his green and yellow boogers in a baggie and sent them home so she could physically see the presence of infection. But still she did not take him to the doctor. My father is a registered nurse, he recognized the signs of Tim’s worsening condition months ago. My whole point is that it would not have progressed to this point had his mother sought medical treatment when she was first advised. This child might not have been in the hospital with pneumonia now if he had been treatment in the fall when we began asking.

I really wish I had known about the guardian ad litem earlier. By this point, it is probably too late. This Saturday will be a week since has not had any nourishment. In fact, we just received a call that his i.v. came out, the i.v. that was providing his morphine. The mother would not let them start another i.v., even to administer morphine, the “comfort care” she desired. They couldn’t put the morphine in through his tube. What now? This child has to lay there in pain, uncomfortable, tossing and turning.

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Allie March 29, 2012 at 7:26 pm

I am so sorry. I believe you fully about the mother’s attitude. When my foster daughter was in a car accident some years ago, her mother came to the hospital. She asked to have a moment alone with her daughter. I knew better but I was younger then and not as strong as I should have been. However, I did keep my ear to the door. And within seconds of my leaving the room she had gone from this sweet concerned mother to cursing and berating her daughter while she sobbed, unable to move from her bed to get away from her. That was the last time I ever made that mistake. I don’t understand what is wrong with some people. The only qualification to be a mother is a working uterus, and that’s no guarantee of anything. Crack whores and serial killers can get just as pregnant as anyone else and they don’t suddenly become wonderful people when they give birth. There is no magic love machine that turns on when someone becomes a mother.

Please forgive me for misunderstanding what you meant about Terri Shiavo and I hope I haven’t caused you pain. I don’t think you’re a bad person at all for being angry and I wish you the strength you need to hold on to your good heart despite your anger.

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Amy March 29, 2012 at 2:15 pm

John, what a compassionate response to such a difficult situation.

Reading through the comments, something occurred to me. Others have pointed out that the letter writer’s perspective is only half the story, and that we shouldn’t be too quick to judge Tim’s mother. I agree, but there’s another dynamic here. The letter writer is coming from a pretty powerless place. She loves this young man, but has no say in his care. It might not matter if his mother were a saint–she might still be angry with her. It’s just easier to justify it if it feels like there’s good reason.

I know what that’s like. My husband’s brother had severe medical problems his whole life. At 27, he had a stroke. My in-laws decided not to continue treatment. I remember in my grief thinking that surely they could try; surely he didn’t have to die yet. I was angry with them. I was angry that I (with my medical training!) had no say in his care. Thankfully, I was able to move past that, and I still enjoy a loving relationship with my in-laws. But how much harder would it have been if they were people I didn’t fully trust and love? And if they hadn’t been family?

I hope that the letter writer finds peace and is able to say goodbye, and that her family can be part of helping Tim spend his remaining days in dignity.

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Jennifer Edwards March 29, 2012 at 12:45 pm

John, what you said about dealing with anger is spot on. Anguish is the crucible in which our faith is truly refined.

That being said, I think the out of hand condemnation of the mother of this boy is uncalled for. We don’t know the whole story. I’ve spent a lifetime trying to figure out the motivation of a very abusive mother, who never should have had children. What I’ve learned is that there can be serious, fundamental issues (stress, mental illness, etc) that cause a person to react horribly to bad situation.

I’m praying for both of them, and the boy.

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John Shore March 29, 2012 at 1:52 pm

Jennifer: As I’ve said a few times below (not that you could know that, of course): you’re right; I don’t have the whole story. I CAN’T have the whole story. I only have what I’m given. So I accept that for what it is—being the emotional truth of the writer, for sure—and address only that. That’s all I have; I have no context for anything else. I don’t … do investigations of the whole story, or anything. I speak to her pain, and nothing else. Cuz … no choice.

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gretchen March 29, 2012 at 12:44 pm

So well written and so meaningful from both of you. My mom is in nursing care. She reminds me of Tim. She wasn’t supposed to live past 1997, but she has so much love to give, and so much given to her. Thank you for being a caregiver that truly cares for your “family members”. That kind of care keeps them alive doing Jesus’ work because it is done unto them, too!

I really hope that you take that anger and drive it for the greater good. Please update so we know how everything’s going! Praying for Tim!

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Buddy Rasberry via Facebook March 29, 2012 at 12:35 pm

John, this was an excellent response, and it most definitely spoke to me.

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Eirin Hamilton via Facebook March 29, 2012 at 12:23 pm

“Christ’s life was definitely a heavenly miracle. But just as definitely his death was an earthly horror. And if you want to really know Christ, you’ve got to really know both.”~ profound and often overlooked. Thank you for such wise insights like these.

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Paula Orman Hall via Facebook March 29, 2012 at 12:21 pm

I hope your letter writer will have some ‘alone’ time with Tim..to tell him how much she loves & cares for him; to share with him how much joy he has brought to her & her family. I hope that in the end, he does not suffer or experience loneliness because of an uncaring mother. I will pray that sHe, in all her Divineness, will take Tim in his sleep with your letter writer holding his hand.

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Original Letter Writer March 29, 2012 at 2:47 pm

Paula,

Bless you for your response. I know that our precious Tim will never experience loneliness. He has been sick many times in the past, and I have always sung a song to him, Jars of Clay’s “Jesus’s Blood Hasn’t Failed Me Yet,” but I change the lyrics for him. I’ll sing “There’s one thing I know, that He loves Tim so”. He loves to have his name sung in the lyrics. I haven’t been able to go back to the hospital, because I’m afraid of what I will say to his mother, and I want to remember him like he was last Friday, when he laughed and held onto my hand. He knows he’s loved, that’s the one thing I take comfort in.

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Elle Nicole via Facebook March 29, 2012 at 12:13 pm

I wouldn’t be so eager to pass judgment on the mother in this situation.

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John Shore March 29, 2012 at 1:54 pm

Elle: please see a few comments above for my response to this complaint.

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Allie March 29, 2012 at 12:05 pm

I find that when I’m in trouble the best prayers are sometimes the simple ones: God, help me. Thy will be done.

If you feel it would be the right thing to do, there may be advocacy groups which would intervene on his behalf. Good luck.

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Libby March 29, 2012 at 11:53 am

A gracious response that is once again on point, John. I thank God that there are people such as yourself and the tortured soul who wrote this letter. The only encouragement I can give, besides keeping everyone in this situation in my prayers, is to suggest someone in Tim’s respite family petition the court to be made his Guardian Ad Litem – or at least to have one appointed for him. This person would act in Tim’s interests only and could reinstate therapeutic services if the courts rule that would be in his best interest. It’s worth a shot… Blessings and Peace to you, dear writer. I hope you know how much of Christ’s love is showing in your letter.

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Original Letter Writer March 29, 2012 at 2:52 pm

Bless you, Libby. I wish I had known about the Guardian Ad Litem option earlier. But now I fear it’s too late.

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mike moore March 29, 2012 at 11:53 am

to Tim’s loving big sister,

if there remains a chance for recovery for Tim and your family is willing to be his guardian, I would side-step social services and go directly to a family-law attorney for emergency intervention. Court orders to re-start feeding and fluids can be issued within hours in a case like this (I know, first-hand.) The hospital should be able to refer you to someone. You say Tim is now 18, and what was true in the past, in regards to his guardianship, may no longer be the case. Given your family’s history as a primary caregiver, I believe most courts would at least hear your request.

whatever may happen, you and your family are amazing, and no one knows that more than Tim.

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mike moore March 29, 2012 at 11:57 am

I would add, sadly but honestly, that the comment from Sue Helig, just prior to my own, is very well said and does indeed deserve thoughtful consideration.

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Sue Heilig March 29, 2012 at 11:52 am

Dear John, I’m having a little bit of trouble immediately seeing Tim’s mother as an ugly, awful villain who wishes to have her child die. We don’t technically know all of Tim’s medical situation except for what is being seen through the eyes of someone understandibly distressed by the loss of him. As a hospice nurse, I work with these types of patients and the dilemma that tube feeding can cause in terminally ill patients. The writer mentioned Tim was sick from an aspiration pneumonia which is indicative of an intolerance to filling the stomach artificially when the body no longer digests as it had previously. She also mentions using morphine as a respiratory depressant. This is not used as a means to stop the patient from breathing but to relieve the distress of “air-hunger” that is experienced when lungs are filled with fluid (imagine someone holding your head under water). The writer also states Tim’s mother decided to stop feeding him. This can not be done unless there are serious contraindications to administering the feed. In working with the disabled population we often find caregivers who are so protective of these individuals that they are unable to recognize the effects of or the progression of muliple chronic diseases that become end-stage. Repeated aspiration pneumonia, sepsis and malnutrition from a body shutting down and losing the ability to utilize the artificial feed being infused into it are hard to recognize and accept by those who love the individual. The result is often that the pt suffers prolonged pain, discomfort and suffering. Is there a chance Tim’s mother over 18 years has come to know and accept this and has chosen to aim his medical care for his peace and comfort rather than to futile interventions that are harming him? Please consider it.

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Allie March 29, 2012 at 12:10 pm

It worries me that the letter writer mentioned Terri Shiavo as if it were clear that we would side with the people who wanted to keep her alive. When in fact her autopsy revealed that she was unarguably totally blind and almost certainly had no consciousness since she had very little working brain. Her family imagined she was responding to them, seeing, and tracking balloons, for example, because they wanted to believe that very much. I feel for them, but that doesn’t mean I think they should have gotten their way.

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Original Letter Writer March 29, 2012 at 2:41 pm

Allie,

As for my mentioning Terri Schiavo, I only mentioned her because now I understand the pain her parents experienced. Bless them! Tim was still laughing last Friday. He could hold my hand, with a grip so firm I had to switch fingers often. The only comparison is in that Terri and Tim’s feedings were both ended, and ultimately that is what will lead to both of their demise. I didn’t mention it to engender sympathy, I only mentioned it because I empathize with Terri’s parents, who also did not have the legal right to make the decision regarding their daughter’s care.

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John Shore March 29, 2012 at 12:15 pm

You’re right: we don’t have the whole story. I never get the whole story. What I get is the writer’s version of the story: that, and only that, is all I have to speak to. So that’s what I do. To HER her story is true; it’s that pain, and that pain only, I’m in any position whatsoever to address. I’m not an investigative reporter.

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Original Letter Writer March 29, 2012 at 2:56 pm

Sue, I hope you will look at my comments above regarding Tim’s medical condition. He’s been on a feeding tube for over five years and has not had problems. It would be different if we had not begged, since the fall, for him to take him to the doctor with his worsening cough. Did you miss the part where John mentioned that my father is a registered nurse? He has advised Tim’s mother for month’s that he believed an infection was present, to please take him to the doctor, that he needed antibiotics so that it wouldn’t progress to this point.

Tim has had a do-not-resuscitate order since he was 9 years old. He’s lived to be 18, which says something for his quality of care. This is not the first time he’s been near death, but each time he’s bounced back. He’s only in “pain, discomfort, and suffering” now because he doesn’t know what it’s like to be hungry. His i.v. came out this afternoon, the one source of the morphine to ease his pain. And do you know what his mother did? She wouldn’t let them put it back in. They couldn’t put the morphine in his peg tube. So now the child will be in pain and suffering. Far be it from me to judge though.

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Andrew Raymond March 29, 2012 at 4:52 pm

Baloney and other nonsense, writer. You are, and SHOULD BE judging actions as John said. Refusing him morphine under these circumstances is virtually an act of deliberate torture.

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John Shore March 29, 2012 at 4:54 pm

whoomp. there it is.

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Andrew Raymond March 29, 2012 at 5:03 pm

Did I say wrong, John???

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sayla1228 March 29, 2012 at 5:16 pm

He’s (john) in agreement with you.

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John Shore March 29, 2012 at 8:32 pm

Yes (thank you, sayla): I was responding to “Far be it from me to judge.”

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DR March 29, 2012 at 9:06 pm

Do you understand that he was speaking to the heart of the letter writer? How could John know the other side of the story?

Compassion and empathy don’t mean that we have to know all sides of this story. That those of you have jumped into a situation that is tragic and unbearable to make sure that the Letter Writer’s experience is cast into doubt seems so inappropriate to me. She’s lost her – for all intent and purpose – child. I realize you’re well-intended but there is a time and a place for this kind of comment. I wonder if it’s serving you more than this woman in her loss.

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Andrew Raymond March 29, 2012 at 9:45 pm

DR, point well made, as ever :-) .

I am also hesitent to make any excuses for Tim’s mother. I see ample evidence from the letter writer here to put her in the wrong, unless you are calling the writer a liar.

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Rick Eubank via Facebook March 29, 2012 at 11:50 am

Powerful message in this story!!! Thank you for sharing. Today is a day I needed this message!!

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LSS March 29, 2012 at 11:50 am
LSS March 29, 2012 at 3:37 pm

I don’t know if anybody opened this link, but i posted it because it is WAY too common for parents to kill or otherwise abuse their disabled child with no other cause than they were not expecting to have a kid like that. Of course i cannot know this specific case closely, but it would not be the first or, unfortunately last time that something like this happens.

Most readers identify with the parents “oh what would i do if i had a kid Like That?!” … Nobody identifies with the disabled kid that, if nobody was making him miserable could be perfectly happy being alive, except those of us who were the kind of kid their parents weren’t expecting. The kind that walk out in front of cars because they saw something shiny. The kind that it takes them 20 years to learn to talk. The kind that no matter their intelligence may never be able to hold a job. The kind that despite their apparent ability to hold down a job, may never manage to act like a real adult. The kind of kids that my in laws and my parents had. Or people just like us but with more problems, physical as well as neurological differences…

Every time i read that he will be better off soon, i think How Arrogant!! How dare you imply that he doesn’t have the same right as you to stay alive. How would you like it if somebody looked at the problems in your life and said “Oh well if we kill her, she will be better off in heaven.”

PWD have been surveyed and they claim a HIGHER quality of life generally than people in general. That means people with more trouble are MORE glad to be alive. But there are always others thinking that the burdens on society should be just shuffled away to make room for the real people.

This lady Harriet Mc Bryde Johnson was a hero of disability rights, she died, way too soon, just a few years ago.
http://www.racematters.org/harrietmcbrydejohnson.htm
I’ve linked to an article she wrote about Singer, the ethicist who thinks we should all be exterminated at birth (all the too-problematic ones).
She worked with NotDeadYet, whose name should be self-explanatory.
http://notdeadyetnewscommentary.blogspot.com/

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Andrew Raymond March 29, 2012 at 4:49 pm

Boy, I can relate to that anger. As someone on the autism spectrum (Aspergers) we recently had that hideous case in the Bay Area where the mother of a lower functioning autistic son killed her son and then herself. And then where did the sympathy go — TO THE MOTHER!!!. How bloody wrong is THAT!

The means are the only difference from that mother and Tim’s that I can see from this perspective. And like you, LSS and writer, it makes me very legitimately angry.

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LSS March 29, 2012 at 5:12 pm

yes, this is exactly an example.
And if it wasn’t clear from my comment, i’m coming from the aspie perspective, too.
Some would say we don’t know how it’s like for the more disabled, because we can talk or go to college or whatever a particular other person might never do. But i know loads of people with more and other disabilities and as long as people aren’t making them miserable, they quite like being alive thank you very much.

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Andrew Raymond March 29, 2012 at 5:18 pm

We seem to be on the same page here (though personally I prefer ‘aspergian’ to ‘aspie’.) Since we both post blind I have to wonder if I know you elsewhere :-) .

In my not especially humble opinion, we ‘higher functioning’ disabled need to be the ones to speak out loud and long about this kind of thing. Those less able to functions are our brothers and sisters in both condition and in Christ.

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Barnmaven March 30, 2012 at 10:38 am

I too was absolutely horrified by the amount of sympathy given to the Bay Area mother who killed her severely autistic son. There’s been quite a bit of commentary in the blogosphere amongst those of us who are parenting children with autism and other disabilities about wanting to alter the perception that parenting children with disabilities is some horrible jail sentence. Its NOT. It can be hard sometimes, crazymaking sometimes, but its just like anyone else’s life in that there are hard days, impossible days, good days and amazing days. Having a bad day or even years of bad days is not sufficient reason to murder your child.

Yes, we have bad days at my house. But we have days where our life is so brilliant it is blinding. On the really bad days I just try to remind myself that eventually the pendulum will swing and that there will be a better moment somewhere around the corner. It doesn’t hurt that my son has a smile that could melt the South Pole and he somehow knows just when I need to see it most.

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Laurie March 29, 2012 at 11:39 am

What Peggy said. I have a disabled child and everyone thinks they know better what to do for her. The author of the letter made a mistake by thinking he could read the mother’s mind and then his anger took off from that point. He should double check his clairvoyance omomentor before he goes off on rants.

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John Shore March 29, 2012 at 12:16 pm

See my answer to this complaint above. I never said a word about reading the mother’s mind. I ONLY addressed the only thing I literally could: the feelings/mind of the person who wrote me.

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Peggy March 29, 2012 at 12:25 pm

John, I was not referring to you. I was referring to the writer when saying she knew the mother didn’t really want to deal with Tim anymore. You never said that.

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John Shore March 29, 2012 at 1:49 pm

I was answering Laurie.

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Peggy March 29, 2012 at 1:56 pm

No problem and I agree with the advice you gave her. She is hurt and grieving. Whatever the circumstances of Tim’s life, family, medical care, etc., she lost someone she loved.

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John Shore March 29, 2012 at 2:02 pm

Gotcha, Peggy. Thanks.

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DR March 30, 2012 at 6:09 am

Why don’t you back off a little, stop making this about you and pay attention to the actual letter writer and John’s intent. This is not your story, it’s hers and John was responding to that and he did so beautifully. You have totally inserted yourself into this story and hijacked it because you for whatever reason, chose to take it personally and make it about you. You also have no idea what’s going on here – if John and others choose to trust the story and react to it in supportive ways, it’s none of your business. You recreating the dialogue because it doesn’t reflect your specific scenario is
rude and inappropriate.

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Christie Landtroop via Facebook March 29, 2012 at 11:36 am

I cried too.. and I love this part: “Go Christ inside, and then go Christ outside.” Amen.

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Rev. Carl Johnson March 29, 2012 at 11:30 am

Amen, John. I wish the writer Peace and Understanding. Often, that eludes us.

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Original Letter Writer March 29, 2012 at 2:57 pm

Bless you, Rev. Carl.

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Peggy March 29, 2012 at 11:26 am

Yikes, am I going to open up a can of worms. I think we have to remember that we are hearing one perspective of a very difficult situation. I think that if we heard Tim’s Mom’s story, or the doctor who has treated Tim his whole life, we may hear 2 stories that may have us saying, ‘Are we talking about the same situation?’ I have worked with the elderly and disabled my entire career and rarely do these situations have one clearly right or wrong answer. I am sorry the writer of the letter is so hurt and angry. I encourage all people facing similar situations to remember that we can never truly know what is in someone’s heart and what is their true motivation.

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John Shore March 29, 2012 at 12:17 pm

Right. See my answers to this complaint above. I can only work with what I’m given, see. I DO know what is in the heart of the woman who wrote me this. She’s told us, very clearly. So that’s what I address.

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Peggy March 29, 2012 at 12:39 pm

John, see above.

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Bob Rogers via Facebook March 29, 2012 at 11:22 am

What an incredible situation to be. How blessed was that young man to have had someone, not his family, love him and care for him with such kindness and dedication. We should all hope to be so loved. Wait a minute! We have been. By Christ. Tim has just been fortunate enough to have had a physical confirmation of what we have mostly had to have through faith alone. For her to be selected to act as Christ in the flesh is powerful, and painful. But for Tim totally wonderful.

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Original Letter Writer March 29, 2012 at 2:57 pm

Bob, your response meant so much to us. Bless you, brother.

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Lori Olmstead Cipot via Facebook March 29, 2012 at 11:13 am

WOW! Why do I often cry when I read your posts? Thank you…

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