Discernment and decision
I am overwhelmed with the words of support and encouragement from you all. You have no idea. If anyone has any experience with this kind of decision by all means, drop me a line.
My mind races between alternatives, constantly evaluating and re-evaluating my motives and goals. Given how lovely and fair she looks sleeping there in no visible pain, am I being a more pious-looking version of Michael Schiavo?
I know deep down this isn't so, but that footage of Terri smiling mutely up at her mother plays over and over on my mental screen, and I get jolted with questions like, "What if we do get a superfantastic miracle?" "Doesn't God answer ALL prayers made in Jesus' name?" "Can't we just wait and see?" After all, we'd love to take her home as she is, and care for her for 80 more years.
Then reality returns, and not so gently. The tubes, wires, constant medical interventions, and the possible (probable?) internal suffering she may be undergoing on some primitive baby-sized level. The measuring of pain in these cases cannot be 100% accurate since they assess only objective facts, like heartbeat, blood pressure, sugar levels, not subjective truth, like the angst of loneliness and abandonment.
For Naomi needs what every newborn needs: her mom's arms and minute-by-minute caresses. Late last night Mariella and I had a good cry over the fact that Naomi lies alone under the numbing 24-hour light of the NICU room, surrounded not by teddy bears but the cold beeps and whirrs of life support systems. That right there has GOT to entail a level of discomfort that no machine can detect.
But the good Lord has been walking with us. Many actual graces have been given us. Just yesterday morning, I read a line from the great lay apologist Frank Sheed who said something to the effect that most people who enter the kingdom of God do so as babies. I never thought about that, but it's numerically true.
My parents arrived last night from Nova Scotia, and my only sister is coming Thursday. Tremendous consolations all.
I don't want these posts to become my personal Maudlin Hour. It's therapeutic to externalize what I'm going through, so thanks for listening.
Above all thanks for your prayers. When more dust settles, I'll circle back and post some more.
posted by Patrick at 12:29 PM
19 Comments:
Patrick,
You have every right to externalize (or, in English, talk about what you're going through) and I don't want to hear you criticize yourself for this one more time, got it? (I'm well old enough to be your mother.)
I am moved by your generosity when you say that you would be glad to take Naomi home and care for her, just as she is, for 80 years. But think. 80 years from now, you will not be here, nor will your wife. And even if it were known that you would be here, the doctors have told you that Naomi's damaged brain cannot sustain her life for 80 minutes, let alone 80 years, without constant intervention. You and your wife could not provide that level of attention, 24/7, and if you could, where does that leave your other children?
Our third child seemed OK at birth, but he's not OK. He's seriously mentally ill, and is now, at 24, living on the streets. No one can do anything for him, though God knows we've tried. If I had known all this when he was a newborn would I have killed him in the cradle? Ridiculous. I'd have died myself first. But I don't know how long he will live, under the current circumstances. Not too long, is my guess. I don't know why he was born the way he is. Only God understands that. But I've come to understand that there's only so much I can do to change the will of God, to cover it over, to make it come out the way I want it to come out. At a certain point you say, "Well, Lord, this was Your work, this situation, and it has to be Your work to find a good outcome."
The ways of God are mysterious. Terri Schiavo would have lived, apparently, for many years, if the courts had not intervened. That's not quite true of Naomi. She needs quite a bit more than just food, and even with all that intervention she's not going to make it.
I'd invite you to think, at this horrible time, about what exactly the will of God here IS. He is in charge, no question. Is it His will that we intervene, over and over again, with sophisticated medical technologies, to prolong this process? For reasons we cannot understand, this baby was born without the wherewithall, neurologically, to make it on her own.
On this earth, that is. She'll make it just fine in heaven.
Can you just take her home, to her mother, to her sisters, and give her that, hold her so long as you can? Would that be what she would want? I think I would.
1:30 PM
Wow. Susan, I agree wholeheartedly. Take her home, take pictures, take turns holding her. Both my father and brother, dying of cancer (at different times), chose to die at home, surrounded by family. It was a great blessing for us, too much to explain here. Such heart-wrenching decisions. But I think Susan has hit the nail on the head.
3:49 PM
You've all written powerfully, and I appreciate it. While I'm not *quite* convinced Naomi's toddler sisters are the appropriate age yet to witness their parents crying like mental patients (I think it would bring on needless anxiety and terrible memories for them). But the withdrawing of the non-stop interventions will cease fairly soon. And I agree entirely about the "Heaven vs. More Of the Same" principle, brutal as it is for us who remain. (I was being hyperbolic with the 80 years bit.)
The story of your son is hard to imagine, Susan, and it very much puts our situation in a whole different frame. All deep suffering seems invincibly, uniquely horrible -- until you compare it to some worse trial.
St. Teresa of Avila once described life on earth as a long night in a bad inn. True, or what?!
10:16 PM
Patrick,
The images of Terri showed by the media were of early footage before her condition set in. I remember those images and get angry that the press would misinterpret her condition to the point of making anyone believe she was that well off.
I don't understand the way of blogging which sends people into the mental realm of things. Connect with your sensations, your precious family, and walk through the natural process. God does answer us, not in ways we demand or command.
I could not imagine your pain. I send many prayers... but please do not torture yourself on a "general whole" with the world. Your life is seperate and precious from that. So is your new born daughter's life. Do not let the media's ploy haunt you in the present decisions.
Life is life. Death is death. They are both equally precious. Honor the whole life cycle and realize that is God. Trust. May you and yours walk through and feel every part of this precious moment. May you not run away from it with mental banter. Embrace every sensation.
12:03 AM
Please e-mail Sister Briege McKenna right away at: prayers@sisterbriege.com
Her Web Site is:
http://www.sisterbriege.com/index.htm
7:22 AM
Patrick,
I have been reading this from afar and have been praying with you, your wife and family.
It stinks. It hurts. But I was amazed at the Frank Sheed quote about most people being babies. I guess that I have thought of that myself, but not when thinking about a specific baby.
Right now you have the technology at your disposal to help her keep living. But in a sense, that is an aberration in our human condition, and even today it is an aberration when one considers the whole world.
It is one of the hardest things to do - to offer someone you love back to the God who loves us more than we can imagine. But I think it is made more difficult by the illusion that technology gives us that she can be kept alive here. It is an illusion of choice.
Trust is the hardest thing. We like to have choices and think that we can control the options. But God asks us to trust. He even asked Jesus to trust (who had faith, but no absolutely certain knowlege about the outcome.) Handing our lives over in trust is really everyone's destiny.
Handing someone else's life over in trust goes against all your basic instincts as a parent - to protect, nurture and comfort her. So I can imagine that it is immeasurably more difficult.
Pray with the communion of saints - all those parents of all those babies through human history who had this same awful moment to confront - and of course Mary, who had to do this, too.
Our parish church has a revered icon of Our Mother of Perpetual Help. When I pass by it, I am praying for you and your wife.
7:30 AM
Merciful God and Father, our unalloyed comfort, who, having the interests of your creatures at heart, are inclined in your goodness to bestow the grace of healing, not only on the soul but on the body as well; be pleased to raise up this sick child from her bed of suffering, and return her in full health to your Church and to her parents. May she then throughout the days of her life, as she advances in favor and knowledge in your sight and that of men, serve you in righteousness and holiness, and render you due thanks for your goodness; through Christ our Lord. Amen.
7:45 AM
God, who in a wonderful way created man and still more wonderously renewed him; who were pleased to aid with many healing remedies the various infirmities that beset the human condition; mercifully pour out your holy blessing on Naomi's medicine, so that she may have health in mind and body; through Christ ouf Lord. Amen.
7:49 AM
I was so touched with your appeals for prayer to John Paul II. Then I remembered something about his last days and the realization that he was basically refusing more medical intervention. (Personally I think it was two tries to speak at the window during Easter week that did it to him. Perhaps making him realize that he could lay down the burden and go?)
May his prayers, intercession and inspiration help you to make this decision for your daughter and to be at peace with it.
9:32 AM
Patrick, Teresa was right. It is just a night in a bad inn.
Teresa knew all about bad inns. She traveled all over Spain - all this in the 1500's mind you! - by donkey, establishing monasteries. I'm sure she stayed in some real dumps. (!)
The point, though, is that however bad it gets, it's only temporary. When morning breaks, we will set out into the sunrise with the best of Companions.
Praying today for you and for your family.
1:05 PM
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1:07 PM
Continuing to remember Naomi and all of you in prayer-
8:51 PM
Dear Patrick-
Karen and I lost our first born, Matthew, when he was 17 months old, and that's why my prayers are so fervent for your little one.
Then, about ten years ago, my second son was hurt at Boy Scout Camp. We got the call and they said he wouldn't be alive by the time we arrived at the hospital. I immediately called every prayer group I knew of and put a call into Sister Briege (we didn't have internet back then.) When we arrived at the hospital, we discovered he had his scull crushed and the bone was mashed into his brain where the lobotomy is performed. If he lived, he would be a vegetable.
The next morning he rose from his coma, pulled the life support out and began talking to us.
One week later he was releaded from the hospital and two weeks after his accident he sat next to me at Promise Keepers in Indianapolis.
He is now going to I.U.
I share this with you because I pray that you never, never give up hope. Our God is an awesome God!
God bless you and your wonderful family!
6:21 AM
God's miracle is Naomi herself. God bless you all.
2:47 PM
We continue to hold you up in prayer my friend.
I'm so stoked that you got her confirmed...and that God gave me the honor of suggesting that idea...Noemi owes me some prayers when she becomes our own personal saint in heaven! She'll be an intercessor for all of us who have prayed for her and her brave parents. Thanks for your witness Patrick.
Love,
The Stefanicks
7:21 PM
Your family and your precious baby are in my prayers.
No, I don't have the experience to share with you other than a nephew born with Down's Syndrome who spent five weeks in the penatal ICU before going home to God. We were a witness to the pain, anxiety and questions. After surgery to repair the hole in his little heart, his kidneys failed and fluid toxins poisoned his little body. Nature took its course.
I must say that, as great as it is (and it is truly a great blessing in so many ways), we sometimes view medical science as God's will. I'm not saying you and your wife are doing this. No doubt you are being offered some precious moments with your newborn daughter that are God-sent. Moments, despite the pain, that you will treasure in years to come.
But had your dd been born fifty years ago, she would not have had these few days of pain and medical intervention (ie: needles, etc.)
Does medical science sometimes extend the will of God further than God wills it?
I am only writing to give you peace of mind. None of us judge you and your decision. It is a heart-wrenching decision no one wants to be faced with.
I would take the loving warm confines of hearth and home over the "numbing 24-hour light of the NICU room (and) cold beeps and whirrs of life support systems" anyday. Who wouldn't?
And God's will be done.
6:57 AM
Hello Patrick,
Our prayers and thoughts are with you and your wife at this unbelievably difficult time.
May all things be well with your soul.
7:43 AM
Dear Patrick,
As a mother whose oldest son stayed in NICU for the first week of his life, I pray for peace for you and your family. What happened with my son (low blood sugar which wouldn't stabilize and- unfounded- suspicion of galactosemia) has little relation to the profound concerns raised by your little one's medical situation. But I know what it is to wonder about how much the needle sticks hurt, and to wish only to hold your baby when he/she must stay in the incubator.
Your anonymous "neighbors" here on the Web wish your family the peace of Christ.
8:45 AM
Patrick,
You and your family are very much on my mind and in my prayers.
Love,
Karen
10:40 PM
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