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.

How We Do It, Part I've Lost Count

Look who decided to show up for dinner! 

That's what Oliver said in his inimitable Big O'ish way last night when Saint Mirtha decided to let Sophie sit in her regular seat at the table instead of the wheelchair. She's been fed in the wheelchair for weeks and weeks, unable to sit up very well or swallow properly, but over the last week and since I weaned her a bit more from the benzo Onfi, she's gotten stronger.

I'm grateful for my children's sense of humor, for Sophie's irrepressible life, for trust in my own instincts, for the generosity of family and friends, for the moments of grace when relief comes out of nowhere, for Virginia and New Jersey this morning.

Most of all, I'm grateful for all my people who do this thing we do and for their children who inspire and honor us. It's National Family Caregivers Month (or National Fucking Family Caregivers Month, as my friend S calls it). Happy NaFuFaCaMo, all you MoFuFaCas!

What do I think? I think we're on the right path for NOW, and there's really only NOW.

My friend Carrie Link sent me this video this morning. Natalie Merchant's album Tigerlily was released on June 20, 1995. I listened to her song Wonder over and over throughout Sophie's infancy and childhood. I realized today when I looked up that date that it was the day we left the hospital after her diagnosis on the 14th of June, 1995.

As Carrie says, there are no accidents.

Doctors have come from distant cities just to see me, stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders 
of god’s own creation and as far as they can see they can offer no explanation.

Newspapers ask intimate questions, they want confessions. They reach into my head to steal the glory of my story. They say I must be one of the wonders of god’s own creation and as far as they can see they can offer no explanation.

I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.

People see me; I’m a challenge to your balance. I’m over your heads; how I confound you and astound you to know I must be one of the wonders of god’s own creation, and as far as you can see you can offer me no explanation.

I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as she came to my mother, “know this child will not suffer.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.

Grace

Dear You,

I have neglected to thank you in any timely fashion but won't undercut my apology with any excuses or defenses. Had I not been so stunned by it, I would have thanked you for your gift months ago. A mutual friend emailed me one day in March to tell me that you wanted to pay for Sophie's cannabis medicine. My friend told me that you read this blog and that I had helped you and that you, in turn, wanted to help us. My friend told me that this is something that you do. I didn't know what to say, so I said nothing. My friend emailed me again and stressed how important this was to you, how customary. Sophie's medicine is expensive. It is expensive for most people. Some people move their entire lives to states where they can have access to cannabis oil. Some people can't afford the medicine at all. We could hardly afford it, but I felt there were people far more worthy than I to receive such a gift. Yet the stress and strain of paying for it was considerable. I struggled for weeks in conflict over whether to accept such generosity. I am a strong person with sharp edges, my softness worn thin by the years. I am proud. I can do it. I can't do it. I can do it.

Accepting help is curiously one of the most difficult challenges I've faced over the two decades of caring for Sophie, and it's something that many of us who do this caregiving find we have in common. I think it has something to do with the chaos of our lives, our need to find order and meaning, to perhaps assuage our guilt and stem our suffering when we can't fix our children or control, really, anything.  There is a grace to accepting grace, and while I have had numerous opportunities to do so in this grand world, I confess to feeling more resistance than yield.  I accepted your gift and thank you for it. Thank you with all my heart. Sophie thanks you with all her heart.

Not a week goes by that I am not asked by someone for help, for advice, for information or for comfort. Graced, I try to live with grace. I feel like the woman at the well, dipping buckets down to the deep and pulling them up, overflowing. I don't know who you are, but your generosity is the water and the water keeps coming up, in buckets overflowing, and it's sustaining all of us. Thank you.

Love,
Elizabeth

How We Do It, Part XLIII

The sheer number of Sophie's seizures and the fact that I couldn't leave her alone or unrestrained for one single second today might have driven me to drink. Permanently.  Instead, I listened to Oliver play Tequila -- slowly but pretty damn well. There was a moment later, when the three children and I sat down to dinner, when Sophie flung her cup and Oliver caught it, instinctively, even mid-conversation without missing a beat, that I knew I was where I was supposed to be and that where I was supposed to be was a very, very good place.

Dear You

Dumbfounded.

Stumped.

Speechless.

Overwhelmed.

Blown Away.

My Socks Knocked Off.

Floored.

Filled Up.

Graced.

Happy.

(that would be me, and much like the photo above, taken nearly thirty years ago with some of the beautiful women who orchestrated the whole beautiful project, I can't do anything but say thank you, my hands to my face with a big, giant grin)

Thank you, Chez Werndorf, Neuro-Chick Kid Doc, Carrie, Brittany, Gay, Gina, Jill, Liv, elizabeth, Beth, Buck, Mitzi Ann, Janet, Bob, Emma, Owen, Missy Slick, Bluegal, Susan, Carol, Gail, Sheila, John, Susan, Moye, Doug, Claire, Teddy, Margaret, Anderson, Anna, William, Lucas, The Freemans, The Sullivans, the Banksons, Vic, Mary Grady, Helenie, The Mermaid Union, The Martins, Jennie, George, Will, Allen, Jack, Mary Campbell, Peter, Henry, George, Ella, Sloat, Ginna, Carson, Clara, Grace, Roy, Carlton, Monster Max, Heather, Logan, Diana, Len, Annabelle, John, Jane, Phil, Fish, Johanna, Daisy, Dash, Carolyn, Hartley, Grace, Anne, Dave, Sarah, Anne-Hope, Laura, Charlotte, Dean, Jessica, Hazel, Grace, Nora, Willa, Julia, Billy, Emily, Grant, Sarah, Antoine, Mattieu, Blanche, Alix, Melissa, Mark, Linda, Rod, Ethan, Parker, Peter, Shannon, Suzanne, Kevin, Allyson, Frank, Elizabeth, FOS (friends of Sophie), Chamberlins and a gazillion Anonymous people.

Thank you.

The Long Distance Casserole Brigade: A Guest Post

So, I was loathe to post anything about this amazing thing going on behind the scenes of my very active life, but I'm going to do it here in a lame attempt to accept grace -- well -- hopefully -- gracefully. Here's a guest post written by one of my oldest and dearest college friends, Missy B. 

There is an old tradition in the South (does this happen everywhere?) involving casseroles and frozen fruit salads.  This tradition demands that whenever there is a family crisis, a death, a hospitalization, a new baby, or an illness, friends line up at the door with food in disposable aluminum dishes that will hopefully bring some sort of comfort to the family in distress.  When my mother was run down by a hit-and-run driver in our lovely suburban neighborhood in the late eighties (she improbably survived with only a broken leg), my family received so many casseroles that my younger brother set up a ranking system where fantastic meals were rated a 10 and the not-so-yummy might even receive a 1 (green bean casserole with canned French fries on top anyone?).  When I improbably birthed twins at the age of 42 after years of infertility, we did not cook for a month because of the generosity of our friends who set up a meal brigade.  I will never forget the shit-kicking smile on the face of one friend as her family of four marched down our driveway, each person proudly holding a piece of their lovely meal: salad…casserole…crusty bread…dessert.

It is what we do to somehow participate in the joy or the sadness of our friends.  I mean, sometimes, what else can we do?  We can’t take the burden from our loved ones but by this symbolic act, we are saying: “Know that you are loved.  Know that we are thinking about you.  Know that we want to help in some way.”  It beats the hell out of handwringing and doing nothing, you know?

Those of you who love Elizabeth and her family from this blog might sometimes experience this feeling of desperation.  My God!  What can I do to help? Those of us who have known Elizabeth since college or even before and now live so far away join you, her new friends, in these feelings of inadequacy about our inability to somehow pitch in and help.  

Remember Elizabeth writing about her weekend reunion with her friends from college a few months ago? (read about it here) Well, we all decided during that weekend that we wanted to somehow create a long-distance casserole brigade because none of us live close enough to support her in the day-to-day of taking care of her beautiful Sophie.  We can’t bring her casseroles, give her respite, take her out for a drink, watch her in her plays, run a carpool one day or any of those things that we would be able to do if we lived around the corner.

So, instead of these things, we created a fundraiser page so Sophie can ride in style in a new Duet wheelchair bike.  You can visit the site here if you want to participate:  

https://www.youcaring.com/aduetforsophie

(nota bene: Elizabeth was reluctant to share this on her blog but we convinced her that you guys might like to join the fun!)

I am, as you can imagine, speechless. A rare thing, all around.