Wednesday, December 6, 2017

The Grace of Caregiving



I'm typing this from Sophie's hospital room in Santa Monica where we arrived yesterday early afternoon after a visit to the pediatrician turned into a ride in an ambulance with Sophie struggling to breathe and a possible diagnosis of pneumonia.

Here's the good news: She doesn't have pneumonia.

Here's more good news: The care she received from the pediatrician, from the paramedics and all the ER docs and nurses as well as those attending her in the hospital has been impeccable. I just finished speaking with her attending doctor who stopped the oxygen and is refraining from giving her any more antibiotics as she is absolutely certain that there is no sign of infection. We might even get to go home later today or this evening.

Here's the bad news: This is the second time that Sophie has gotten into trouble with the increased secretions that are a side effect of the benzodiazepine that she's been taking for the last decade -- let's face it -- her entire life, more or less. Coupled with her reduced motor ability, she doesn't have the same capacity to clear the secretions and is probably aspirating more often than not. SO, I've been in touch with her neurologist and her regular doctor to tackle the problem. We are talking mechanized vests, oxygen for home and perhaps a palliative doctor. For those of you who might gasp at the word palliative, it's not the end-of-life kind of care but rather the kind of care that improves life quality as much as possible when you're dealing with a chronic condition. The fabulous attending physician is going to give me a referral to one, so we'll see how it all plays out.

It's been a hard few days. Ok. It's been a hard few weeks. Ok. It's been a hard few months. Ok. It's been a hard few years. Ok. It's been a hard couple of decades. Sophie is as resilient as hell, and that gives me strength. You know that I don't believe in an instrumental god that is directing the show, that is making things happen for good and for bad. My supplications are not directed toward that sort of help, and while I appreciate the prayers of others as good intentions, they do not comfort me nor do I believe they change the course of events. I am hard-pressed to even describe the incredible lifting of weight and sorrow and darkness from my mind and heart. When it happens it seems miraculous. I imagine it to be a kind of collective unconscious -- the love directed our way from family, from friends and those who come into and out of our lives -- a love that is in turn reflected outward.

I don't know why I am able to hold incredible sorrow and even despair along with joy and optimism, but I think it has something to do with what I call grace.

I feel much gratitude for what I believe is the imposition of grace, bestowed on me by Sophie and the years of caregiving, the relinquishing of false notions of control and illusion. Does that make sense?

As I've typed, Sophie's had several large seizures. It's not easy. Grace has nothing to do with being cured or even being "normal." I know next to nothing in the end, nor do the doctors, nor do the prayers or supplicants. Bad things happen all the time to very, very good people. Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed.


24 comments:

  1. Your words buoy me. Every. Time.

    This: "I don't know why I am able to hold incredible sorrow and even despair along with joy and optimism, but I think it has something to do with what I call grace.

    I feel much gratitude for what I believe is the imposition of grace, bestowed on me by Sophie and the years of caregiving, the relinquishing of false notions of control and illusion. Does that make sense?

    As I've typed, Sophie's had several large seizures. It's not easy. Grace has nothing to do with being cured or even being "normal." I know next to nothing in the end, nor do the doctors, nor do the prayers or supplicants. Bad things happen all the time to very, very good people. Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed."

    "Does that makes sense?" YES. "The imposition of grace," bestowed on us by unimaginable challenge and loss. Your mind/heart slays me. "The imposition of grace." That's the title of something . . .

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  2. Beautifully written, as always. And, YES, it makes so much sense in a senseless world. Always thinking of you both. XO

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  3. Thinking of you. Percussion vest has had a wonderful effect on Robert. You might want to ask for an oral suction machine to periodically clear secretions from her mouth, if that seems useful. Yankauer tip.

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  4. So beautifully written. You embody extraordinary grace and beauty. My heart feels so deeply for Sophie. She is a perfect young woman who is blessed, really blessed with having you as her mom. Joanne

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  5. You and Sophie are the living embodiment of grace. Pure grace. Grace under pressure. The goodness of grace.
    The miracle of it all.
    I don't pretend to know where any of it comes from and like you, I certainly do not believe in a god who does or does not answer prayers.
    I believe in the human heart, the human soul, the human determination to live. And the grace that can make it all worthwhile.
    I am so glad that her care has been good while you've been in the hospital as that has not always been the case. Or, in fact, hardly ever the case.
    Loving you, Elizabeth. And loving that beautiful girl of yours. You are the best mother that Sophie could ever have. And I know that with all of my heart.

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  6. I'm thankful that something is happening. Poor Sophie, poor you. It's scary when your baby is struggling, no matter how old they are. I'm also thankful that all the health care professionals were kind as well.

    All of us have micro aspirations but Sophie has increased secretions and decreased muscles control. I'm assuming she is hypotonic. I've noticed that as I've gotten older it's become more difficult to clear my airway at times and I see the future looming large. I don't know how elderly people do it.

    But there is a plan. I've never met you or Sophie but I worry about you and the big guy hears all about you:)

    Sending love.

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  7. I am so glad to hear that the Care Sophie has been given is exceptional this time around and that Grace has been abundant. Full time Caregiving is indeed a mixture of sorrows and joys, or miracles and trials all jumbled up and sometimes existing simultaneously.

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  8. I a always amazed when you say things I have been thinking. Thank you.
    And using a percussion vest daily has literally been a lifesaver for both of my daughters.

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  9. I’m just going to go back and read this about 5 more times. Your post helped me today.

    As the saying goes, we are all just walking one another home. Thank you for walking me home tonight.

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  10. Sending so much love. I hope you are home. Or comfy in the hospital with Sophie. I hope....I hope.... xoxo

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  11. Dear Elizabeth, I believe this to be absolutely true! It does make sense and the grace with which you move through this world blows my tiny mind. May we all lean in and experience the grace that supports and heals us. XXOO

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  12. THE key to understanding everything about walking that line in caregiving, and sometimes thriving within its boundary, is to be found right here.

    "The relinquishing of false notions of control."

    I don't believe I have EVER heard it more succinctly stated than that.

    It's good that it wasn't as bad as it might have been.

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  13. I'm glad to hear it's not pneumonia. Hopefully some of the treatment options will help. I always admire your continual balancing act between the practical and emotional, and, as you put it, the sorrow and optimism.

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  14. I hope Sophie feels better soon, and you are both out of the hospital with great speed. I hope, too, that you have a book with you.

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  15. Sending much love and light your way. Thank you for writing.

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  16. I was so sorry to read about the rough time you've had. But what a relief that Sophie doesn't have pneumonia; I had no idea that prolonged use of benzos could cause increased secretions and, in patients like our daughters, aspiration, so thanks for enlightening me. That's just one more health issue for us to be alerted to.
    What a pleasant surprise you had with all those efficient and compassionate doctors and nurses - still, it must be great to be home again... (and I hope those seizures have stopped).

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  17. Yes, it really makes sense. Your words and your life expressed in them are so full of meaning and depth. Thank you for sharing them with us.

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  18. "Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed."

    Thank you, thank you, thank you for this.

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  19. The truth of your realizations is so familiar. Grace as a lifting of weight and sorrow and loss, of fear and hopelessness. The world is not as I once thought it to be. Duality is the normal state. Making peace with that is, for me, the healing. Two worlds, two simultaneous realities, accepting, even embracing both. There are times when I use the word prayers when that is what has been asked of me, though what I mean, what I offer, is love. I continue to send it forth to you, to Sophie, to all your family and those you know in equally overwhelming circumstances. It is what we have. It is what I believe in. xo

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  20. Beaming love into the collective consciousness that surrounds you.

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  21. Yes, it makes perfect sense.
    I wish for you and Sophie an overflowing abundance of Grace. I hope, Elizabeth, you know that what you may receive from us you give back to us in full measure. Your words are balm for others who suffer. I hope my love is that for you.

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  22. “Sometimes grace is a ribbon of mountain air that gets in through the cracks.”
    ― Anne Lamott, Grace (Eventually): Thoughts on Faith

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  23. I couldn't agree more with you on grace, prayer and the like. Your first few lines are priceless. That attention she got, that care the medical staff showed, the love you give constantly. That's the grace.

    Huge transatlantic hugs for you and your family.

    Greetings from London.

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  24. Thinking of you, Elizabeth, and your gang. As the parent of a child with epilepsy, I know your worries and fears. Grace and love sustain us.

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