Valentine

Last night we had to unexpectedly put our beloved goofy dog Valentine to sleep. The night before last, I was up most of the night with her, but she wasn't in pain -- just acting weird and restless. Early Friday morning, I had to take Henry to get his wisdom teeth removed, and when we got home in the afternoon, Valentine was still acting weird, and her stomach was distended. I took her to the vet in the early evening and learned that her stomach had twisted or turned or distended, that surgery might be the only option with little guarantee that she'd make it through. It was so shocking and fast. I called Oliver, and he came over to the vet's office to be with her. She was really Oliver's dog. He was barely three years old when we got her.

We are so very sad.

We got Valentine as a puppy when she was six months old. She was fourteen in April and lived a long, extremely healthy life. She might have been the happiest, goofiest dog in the universe. We called her a love whore. Everyone who met her would say, "Valentine really loves me!" We didn't have the heart to tell them that she really loved everyone. She loved the Oliver the most, though.

Not much more to say than that. Or this:

Doctor Visit, Year Twenty-three

Last Month

The new doc was a nice guy, even though he was about twelve years old. I appreciate that his practice, at a major medical center here in the City of Angels, has a significant number of young adults with developmental disabilities. I'm older than I look, he assured me at some point during the initial visit. I have three children. Generally, these visits consist of The Doctor asking me a whole lot of questions whose answers are duly noted in chicken scratch on the clipboard he or she sports. Nowadays, there's a keyboard and a computer screen that's always facing away from The Mother and The Patient. I'm not sure why this is so, but given the mundanity of the questions and the number of times in The History of Sophie, Inc. that I've answered them, I like to imagine that Sophie's file is flagged with some kind of red banner or star that stands for Noncompliant Mother. I like to imagine that it says somewhere in the reams of "information" it purports to have regarding my darling daughter that there's anecdotal evidence of seizure control success with cannabis medicine, but mother is a bit on the aggressive side so shouldn't be supported because it'll go to her tiny little mother mind™ and blow it up. I like to imagine a banner running across the screen that says, We have not helped this person in the 23 years that we've been treating her, but pretend like you know what you're doing.  Mother historically has been correct about her daughter and mainly appreciates kindness and honesty. To be fair, this was a Doctor and not a Neurologist, and like I said he was kind and direct and spoke to Sophie like she existed and I feel a bit of relief that we perhaps have finally found a physician that will coordinate her care, when it's needed. When it's needed is the operative phrase here, and it's been my experience that we're sort of held in thrall to the medical system, that we're a bit enslaved to its protocols and rules and regulations. But, I digress. The Doctor asked all the right questions for a bit and was respectful of my wish to not vaccinate Sophie. When he suggested that she should be tested for immunity to hepatitis, I reminded him that she would have no immunity, since she is no longer vaccinated, and then he suggested that she should be vaccinated with that and with the flu vaccine as well since the risk of complications and death from those diseases is so great, and I wanted to tell The Doctor that I feared Sophie's death every single goddamn day, and it wasn't from the flu or hepatitis, but that I'd also reached a sort of equanimity about it all, at least the death and absurdity part, but instead I demurred and gave a 16th century smile. When he asked whether Sophie was sexually active, I pulled the sword out of the scabbard at my waist and cleaved the keyboard in two, right between his legs, missing the member that had given him the three children, of course, because my aim is always true. Then I took a hold of Sophie's wheelchair and rolled out of the examining room.

Aiyana

Photograph by Carl Jackson
cbjphoto.com
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This morning I quoted a Haitian proverb that I remembered reading way back in an article about the great physician Paul Farmer.

Dey mon, gen mon (beyond mountains, there are mountains)

It became the title of a book by Tracy Kidder about Farmer and his work in Haiti. I was talking to Carl, the Bird Photographer that I love, who is currently in Houston helping in some of the clean-up going on there after the terrible hurricane two weeks ago. It is, as you can imagine, nearly insurmountable work.

Some interpret the proverb as meaning there are inexhaustible opportunities. Others say that surmounting obstacles gives you a better view of the next.

I am so grateful to Carl and his friends for doing this work, these acts of love.

As I type this, it's only been an hour or so since a young girl, one of our beautiful and close-knit epilepsy and cannabis community here in southern California, was rolled into surgery to remove her organs for donation to those who need them. Aiyana was admitted to the hospital a few days ago and put on life support, her brain unresponsive, perhaps from a seizure or some other hideous complication of the rare disorder she had suffered from her entire short life. She was a radiant child, her mother a goddess. We are all bereft to lose her and know her mother's and siblings' heartbreak, yet are also filled with the most encompassing kind of love that you can imagine, the kind that comes from witnessing and abiding with suffering and unconditional love.

So many obstacles, yet love is endless.

Dey mon, gen mon

It's NaCaGiMo, Folks! Day Seven

I know I've been snippy and snappy and sarcastic about National Family Caregiver Month, and that's mainly because I've developed what I think is a healthy coping mechanism. Being snippy and snappy and sarcastic is a kind of coping vice, I guess, for some of us who don't drink or do drugs or otherwise act destructively when under a whole lot of stress. And maybe it's not much of a vice -- I think that anger and frustration can also be used to fuel change and increase awareness, break down barriers and make the very real problems that we caregivers deal with on a daily basis somewhat more relevant and resonant for others.

Today, though, I'm going to pause and pay homage to my many caregiver friends who've lost their children. Part of the caregiving deal is that many of us think about and experience death all the time. If we're not worried that our children will die before us, we're worried that we'll die before them. At best, this is a messed up situation, an impossible conundrum, but it gives one incredible perspective about living each day and even each moment with an almost reckless gratitude. Over the twenty-one years that I've been a mother and caregiver, I have known many, many children who have died. They were Sophie's friends in preschool and elementary and middle school. They are the children of a few of my best friends. They are the children of the beautiful people I've met online, blogging, and in the larger medical cannabis world. Just last week, another child died, the son of a woman I met at an epilepsy conference who is part of the powerful community of cannabis professionals in Colorado. She and I were on a panel with a bunch of obdurate professionals -- she as a nurse and parent of a child using cannabis and me as a parent of a child using cannabis. I was devastated to hear of the death of her beautiful son Reggie.

Last night I had the privilege of attending the 6th Annual Candle Lighting to Remember, a beautiful event down in Laguna Beach. We each had a paper lantern that we decorated with markers and stickers, sitting at picnic tables on a bluff overlooking the Pacific Ocean. I made one for Reggie, specifically, but my intention for the night was to remember all the children I have known in my family caregiver world who have died.

There must have been at least fifty people who walked down a steep beach path, placed their lanterns in the sand and then dropped a tiny candle inside. As the sun went down in a glorious display of pinks and purples and oranges, the lanterns grew brighter and brighter, undulating out in this beautiful serpentine way across the beach.

When the sun had sunk into the ocean, we collected our lanterns and extinguished the lights and walked back up the path to the bluff above.

May you be happy
May you be well
May you be peaceful and at ease

-- Metta, or lovingkindness

My Tango With The Dark Side

Sophie had a hideous day yesterday and suffered through multiple tonic clonic (grand mal to the uninitiated) seizures. I have no idea what caused the downturn, and so far today she is much better -- basically sleeping off the drugs. I gave her Diastat (rectal valium) and extra cannabis.

Last night I had some full moon thoughts, though, did some dancing with the dark side in the lead until I was bent backward, his hand bruising my hips, my hair and arm trailing the floor.

How much can a person take? They will do nothing but pump her up with drugs in the hospital and to what end? Why is there no one to turn to during these times, a professional that I can trust? When has there ever been a professional that I can trust? 

When released, I cried on the edge of the bed with my head in my hands because I'm sick of this shitty dance.

If the dance were a tango, imagine me quickly turning my head here, swiveling my hips and leading the dark side in another direction.

Sophie can take a lot. She will continue to take it until she can no longer. I have been traumatized over these past couple of decades for good reason and have a unique constitution that is repelled by the practice of traditional medicine. I do not want hospital intervention for my girl. 

I sat on Sophie's bed, brushed the hair from her forehead with my hand and murmured soothing words to her. I told her how much I loved her. I dissociated from the terror by acknowledging and then inviting it to stay. I called a friend and told her that I was afraid.

It's amazing how terror dissipates when it's acknowledged, when I don't push it away.

Yes, I am afraid that Sophie's small body won't be able to take these bad days. Yes, I am afraid that she will die.

Her small body may not take these bad days. She may die.






The thing is, her small body took that bad day. She is very much alive. Not because of my thoughts, of course, but because of the dance, her own dance, the one that I can really not control, even as I dance along, the one that I can only love.

Oliver Sacks' Illumination

Oliver Sacks' Anthropologist on Mars was published in February of 1995, and Sophie was born one month later. By that summer, she had been diagnosed with infantile spasms and we had begun the journey that would take us to proverbial other planets. I read Sacks' book with the same relish that I'd read his previous ones, but this time I felt he was speaking directly to me.

I lived in New York City in the nineties, not far from where Dr. Sacks practiced. I had looked up his address and telephone number in the phone book. I thought he sat behind a great wooden desk with a small light that illuminated not only the paper in front of him but also the consciousness of the people about whom he wrote. I fantasized about calling him and imagined we’d have a conversation about Sophie – not so much about stopping her seizures and making her normal but rather about her integrity as a human being despite whatever peculiarity or abnormality she possessed. I never called Dr. Sacks, but I did read everything he wrote. I also sat in a chair in the third row from the stage where he stood reading aloud from his work many years later in Los Angeles. Because his words had so deeply resonated with me, sustained me, really, during some of my darkest days as I wrestled with Sophie’s disability, her seizures, her inability to speak or care for herself, her identity and mine, I felt an enormous impulse to jump on the stage and embrace him. I didn’t do that, either.

This morning, I woke to the news that Dr. Sacks had died. I understand that some disability activists have criticized him for exploiting his patients’ disabilities in the interest of narrative. Scientists have criticized him for emphasizing narrative over the clinical. More, though, have loved him and been illumined by his writing. It’s been more than twenty years since I read An Anthropologist on Mars, and while my daughter’s brain has remained a mystery to the neurologists that have failed to help her clinically, her integrity as a human being, reinforced in my own mind by the writing and life of Dr. Sacks, is far more evident. I will miss knowing that Dr. Sacks’ light is on, somewhere in the world, and am grateful for how he shed it on Sophie and me.

Death and Robots

I took Oliver and Sophie down to a boat festival in Redondo Beach late this morning. We left Henry at home, sleeping as is his wont. After walking around all the booths, looking at the beautiful boats, and eating some fried seafood at one of the clubs that had opened its doors to festival-goers, we drove back home and listened to the Moth on the radio. First we heard Bliss Broyard's very first Moth performance when she told the story of discovering her father was black when she was 23 years old. Oliver thought it was weird, but he listened and didn't beg to switch to his godawful music station. The next up was the Indian-American physician Siddhartha Mukherjee who told an amazing story about his grandmother, her life and how she died. He recounted a memory of traveling on the river as a child and rounding a bend to see the dead being bathed and then put on funeral pyres, and then rounding another bend back into "normal" life. When his grandmother died, he and his father carried out the simple rituals of death -- the wrapping of the body in a white sari, bathing the body and then taking it to be burned. He compared that to the dying he witnessed in the United States as an oncologist. He described a woman with breast cancer who he had treated and who had died overnight after being admitted. He went to her funeral and noticed that lipstick had been applied to her lips and described how the whole process of death had become sanitized. He asked his students later, How many of you have actually lifted the body? What does the weight feel like? He spoke about gravity and the grave. He spoke of how our culture is actively forgetting the rituals associated with death. 


Oliver said, That's kind of true. I agreed. It's kind of creepy, too, he added, and I talked a bit with him about why that is so. I told him about a friend of mine whose young daughter died, how she and her husband and their other daughter carried out some of the same rituals, how beautiful that was to me. Oliver, who had just recently attended the Eastern Orthodox funeral of my aunt noted that the service made him feel weird and excluded. He reminded me that on Mother's Day he had seen a giant bee flying about, and in the moment he saw the bee, he thought of Aunt Yvonne and how weird that was, too. We were silent for a bit. I told him that when I die, I would appreciate a non-religious service that celebrated my life and that I would prefer something simple as far as my body goes -- that I'd like to be cremated and my ashes scattered somewhere I love. Then again, I said, since I'll be dead, it doesn't much matter how and what you do with me. Oliver said, When I die, I want my head to be removed from my body and frozen until it can be put on a robot, that way I can be in the future, too.



You can listen to Mukherjee's brief talk here.

Aunt Yvonne

My beloved Aunt Yvonne died last weekend, and I headed up to northern California on Monday to attend her funeral. Aunt Yvonne was a wonderful lady who had a long and prosperous life. I'll miss her gentle spirit and regal presence, as well as her incredible generosity. I'm grateful for the extra time that I got to spend with her over the past seventeen years in California, this incredible state that she and I, both east coast transplants, loved. She will be missed.

Death and Sex, Tigers and Tightrope Walkers

The first dead person I saw was my grandmother in her open coffin when I was twenty-five years old. That doesn't count the shadow of a dead person I might have seen when I was sixteen years old, the flash of blonde hair through the windshield, the eyes, before our cars were irretrievably smashed together. Like I said, I'm not sure that I really saw this or imagined it, afterward, as I recovered. That is another story. I walked up to my grandmother's coffin holding my father's hand tightly. I've never seen a dead person, I said to him, right before we reached his mother and bent over to kiss her cold cheek. I know he wouldn't have said it then, but at some point afterward my father said, How could you never have seen a dead person? I probably saw scores of dead people before I was half your age! That photo above is some dead relative of mine. The little girl, perched on the stool, is my aunt, the woman behind her my grandmother.Perhaps that is my great-grandfather. Evidently, posing with your dead relatives was a common thing in southern Italian culture. And my father apparently posed in much the same way as my aunt, many times during his childhood. They were accustomed to death.

When I show this photo to people, they peer at it and wonder if it's real. Death. We don't like to think about it very often, we do our damn best to avoid it, and when it comes we're shocked, shocked. Sex and death. We're shocked by both. And we certainly don't write about it until we do.

I am an animal today, pacing my cage or circling the tightrope walker above me. She doesn't see me, doesn't remember how she shed her tutu, plunged from the wire, naked, and wriggled into this skin. How do I get back? Where is the Master of Ceremonies? Sometimes we need the proverbial provocation -- the stick, the prod, a crack of the whip, the leap, a roar, talons unsheathed, the naked body devoured or devouring the beast.

The release of Love

This overwhelms me in the best way:

As meditators, we had prepared for this – how to move the energy up from the belly and into the heart and out through the head. I have never seen an expression as full of wonder as Lou's as he died. His hands were doing the water-flowing 21-form of tai chi. His eyes were wide open. I was holding in my arms the person I loved the most in the world, and talking to him as he died. His heart stopped. He wasn't afraid. I had gotten to walk with him to the end of the world. Life – so beautiful, painful and dazzling – does not get better than that. And death? I believe that the purpose of death is the release of love.

Laurie Anderson, on the death of her husband, musician Lou Reed, via Rolling Stone Magazine

Kerry Girl

This is Kerry, and barely a week ago, she died unexpectedly after surgery to correct a vicious infection. Kerry was three years old. Kerry's mother, Kristin, a woman whom I have never met, sent me the following email a few days ago, and I was quite suddenly yanked up and out of the abyss where I had been resting.

Hi there Elizabeth, I wanted to reach out to you for thanks.  Our three year old daughter, Kerry, passed away almost a week ago.  Her service was held just yesterday at our family's church.  Your extreme parenting video was shown to the 200+ people that attended. 
Kerry was diagnosed with infantile spasms shortly after her first birthday, and I so appreciated you and the rest of the bloggers I found that were able to put into words what I was and am are unable to express. During the service our pastor mentioned your "her eyes will sustain you" as a particular image that stood out to him.
i just wanted you to know that your video has reached so many people, and to thank you for putting into words what I have been feeling these past three years.
Thank you more than you will ever know,

Kristin 

Contrary to what some of you might think or even be feeling yourself, being yanked out of the abyss where I was resting was not, emphatically not, because I felt blessed, because my children were alive and not like little Kerry, gone far too soon. Kristin's astoundingly generous email to me and to you, the other parents that participated in the extreme parenting video, didn't separate me from her or my Sophie from her Kerry. I did not, for a moment, think Oh, thank God. Them, not me. Her, not her. Kristin's hand didn't reach into the abyss but was, I think, always there. I have been struggling to articulate this for days, this grace that descended in the form of an email from a stranger.

We are all connected. All the time. 

Since that email, I have exchanged many words with Kristin and learned a bit about her beautiful little girl Kerry. Kerry and her twin brother Matt were born early in Colorado to parents who had long awaited children. It was clear that Kerry had some congenital abnormalities, and soon after birth she had her first seizure and was later diagnosed with infantile spasms. While the seizures were quickly controlled with medication, Kerry had developmental disabilities and made slow progress, but her family provided her with all the necessary treatments and of course, love. Kristin wrote this:

Therapies continued, head control was getting stronger, more avocados being eaten, plans being made for preschool and we got braver when taking her places in her toddler wheelchair.  I did not handle the stares well, I must say.  Many "chin down, eyebrows up" looks from me to people who looked a little too long.  She also loved to sing...her songs were mostly drawn out vowels mixed with short consonants, but they were truly her.  She supplied the soundtrack for our days.  Scarves became her favorite texture, she would feel and stroke the fabric against her skin...finally found a use for my mothers satin pillowcases!  

Kerry died after surgery to correct a massive infection in her ear, and Kristin told me that she hopes that her little girl is not forgotten. Please help me to help Kristin know that Kerry will not be forgotten, that this little girl who loved avocados and scarves, who sang to her family and provided the soundtrack to their days, is connected to each of us. Please let Kristin know that we are connected, all the time.

Thank you, Kristin, for sharing your little Kerry with me and for allowing me to share her with others. I am so sorry, so saddened by your loss, by our loss. We are all connected. All the time.

Sophie and Me in Blue

When I was a small Catholic girl like most small Catholic girls I was enamored of the saints. I knelt in church (and sat and stood and sat and kneeled and stood and sat and kneeled) and stood and saw spots or tiny lights and then I'd blink, sweat would bead, roll down the nape of my neck, the priest's voice a drone, I think I'm going to faint, I'd think and blink, my hands smooth and brown on the pew in front of me. Helen who carried the cross will be my name, I said when I was twelve. Twelve! I'd kneel then and think of the saints. Yesterday afternoon, I was drifting, I was angry, I was drifting and angry about the day, the day after the show about weed and seizures, the day that began, again, with seizures. I was angry about my cousin, my age, dying of cancer far away, a cousin who I loved in my childhood, who loved to read like me, who wrote me letters sealed with a kiss. Her name is Maria. I drove my car to the bank in the little village just down from the church where I used to go (to stand, to kneel, to sit, to stand, to kneel) and I was angry when I got out of the car and walked, a beautiful day, it's always, always a beautiful day, and four beautiful people sat in front of a restaurant and spoke what was that? Italian? Yes, Italian. Italian rolling off their tongues like saints. Jesus Christ, I thought, this town is impossible. I walked into the bank and then out and the Italians were getting up from their table and walking, walking in front of me, two women and two men, all beautiful, the Italian still rolling off their tongues like saints, one woman had a band of smooth brown skin, naked above her ass, and I was still drifting, angry, when I got into my car and drove back home. At a stoplight, I looked over into the car next to me, a woman in full Muslim garb, her head covered, sat at the wheel, her daughter in the back seat covered as well. The light was still red and I was still angry, and the daughter was young but not young enough to sit in a booster seat. She looked ridiculous in the booster seat, stupid in her veil. Take off your bullshit cloak of modesty, I might have hissed, your daughter is too big for that car seat. The light turned green, I looked away, I drove away. When I got home I sat with Sophie, I stood with Sophie, I stood and sat and kneeled. I blinked, a bead of sweat rolled down the nape of my neck and down my back, I was wearing a blue dress. I am not a saint.

Planting Rue

Ah, are you digging on my grave,

My loved one -- planting rue?

Thomas Hardy

I think my week of posting poetry in lieu of tongue lashings is finally coming to an end. I am reminded of my favorite joke:

What goes HA HA PLOP?
(answer below)

So, should I continue to post poetry that sustains me when I'm darkest or should I get out the scythe and sharpen my tongue?

Should I laugh my head off at the creeps in the Senate and the constituents they represent who wouldn't vote for the barest minimum in gun control laws, or should I sharpen my tongue and cry out against those who believe they have the right to protect their "liberty" and themselves from -- wait, exactly what? -- with a big ass gun, a collection of guns that they picked up at the local gun show in their godforsaken prairie town. I don't know about you, but I live in the second biggest city in the country, and I'm not particularly afraid. I don't foresee a need to protect my children with a big-ass gun from either a criminal or the government.

Should I laugh my head off at the fact that it'd be easier for me to go buy a big-ass gun and ammunition to protect me and mine from the government than it would be for me to purchase an affordable medication for my daughter with my private health insurance policy?

I just typed a comment on another blog about my own head this week, so heavy with the vile stuff that's happened, that I imagine it falling soundly off and not even bouncing.

Reader, is your head heavy and your tongue sharp?



































***A man laughing his head off.

Vesuvius and I

I thought that Skeeter was going to be my End of the World post, but this morning I woke up to howling, and for a split second, I thought it was here. The room was dark and for a few moments, I lay in bed and listened, carefully, as the howl began and stopped and then I realized that it was Sophie so I sat upright and then called out and The Husband, who was sleeping with Sophie, said it's all right, she's having a seizure, and by the time I walked the few short paces to her room, she'd stopped howling and just lay quietly. I left The Husband lying next to her and went back to bed, but about a half an hour later, it happened again, more howls, another seizure, a pale face, drawn turned sideways, her hands clammy, nearly wet, her limbs jerking, then loose, our hearts beating rapidly. That's it for today, I said quietly, willing it to be. It was time for the boys to get up, for the last day of school, and it wasn't the end of the world. I wasn't going to write anything this morning, but the writing calms me, the words out, the fear dispelled. Did you know that I fear my child's death each and every day and each and every day I dispel it through writing? Fear, confronted head on, acknowledgement, is a wisp then, a returning to earth, to dirt, to cloud and to sky.

I read Vesuvius this morning (no pressure, dear friend and fellow writer) and felt my fears dissipate into the cold blue sky Los Angeles morning.

May the long time sun shine upon you. 

All love surround you.

And the clear light within you

Guide your way on. Guide your way on. 

That's it for today. And it's not the end of the world.

 

 

 

Yosemite, 2009

I sat two times next to my friend Michelle as she lay dying in a hospital bed at my friend's house, my arm poked through the metal bars of the side rail so that I might better hold her smooth, cool hand that lay curled up near her shoulder. I have never sat near someone who was once so alive yet lay, with labored breathing, her mouth slack and eyelids closed, smooth, so near death. She was at once a gorgeous woman, yet strong for what she had endured, how she had loved, her face softened by time and a baby, watched over, each breath, my finger at her wrist, her pulse beating. We are all so alive I thought, bent over her, so incredibly alive. Michelle died yesterday morning with her family breathing around her, with the house containing all the love one could possibly imagine holding them all.

To live is so startling it leaves little time for anything else.

Emily Dickinson 

3:56, Monday afternoon

It's nearly ninety degrees outside today, and I'm waiting. I'm waiting for Sophie's bus to get here. I'm waiting for the weather to get cooler. I'm waiting for election day. I'm waiting for the doctor to call me back about medical marijuana for Sophie. I'm waiting for Oliver's existential dread to abate. I'm waiting for my friend's sister to die. I'm waiting for a break, for a ship, for a sign.

A Close Call

Dusk and the sea is thus and so. The cat
from two fields away crossing through the grapes.
It is so quiet I can hear the air
in the canebrake. The blond wheat darkens.
The glaze is gone from the bay and the heat lets go.
They have not lit the lamp at the other farm yet
and all at once I feel lonely. What a surprise.
But the air stills, the heat comes back 
and I think I am all right again.

-- Jack Gilbert, from Refusing Heaven

Fall, this year

November brings fall to Los Angeles, fall, finally. The air is much cooler, the skies are gray in the morning, the grass wet, the crows caw and red leaves, however spare, fall on my car. We do have seasons, I mutter, querulous. No matter the gray peels away by noon, a blue sky like a tight sheet, tucked around us, the sun yellow like crayon light. November is the month of gratitude and everywhere I look I see it. I am grateful, I mutter, querulous. I'm grateful for my sons' strapping health, for The Husband's steady job, for the two contracts I've signed to work, for Sophie's purple, pillowed room, her otherwise happy life. There is tyranny to gratitude, the slog of it, pressure like gray over blue that will shine through anyway. Last night, I spent a few hours with my friend whose sister is dying of cancer. We drank martinis with extra olives and laughed about Louis CK and David Sedaris. My friend's husband brought us pieces of bread smothered in tomatoes and olive oil. We ate chocolate cake. My friend is strong and beautiful. Her children, aged eleven and fourteen face their inevitable loss with uncommon grace, their soft faces creased in gentle care. Her sister exudes grace and patience and is very, very tired. Sitting on the couch next to her, I felt as if the house was breathing in and out, expanding and contracting, with love. When I left, the night was crisp and the air fall-damp. Later, I slipped into my house, everyone sleeping, and fell asleep.

"A friend to all...big and small"

When we walked into the church this morning to celebrate Gus' life, this was the card that some kind person placed into our hands, and the tears began to fall and continued to fall, off and on throughout the entire mass. Gus' graceful parents told the hundreds of bereft people in the church that even when they lost their composure around their son as he lay sick, he would always reassure them, Smile, I'm fine, he'd say.  I sat with Henry in the church for the first time in a few years, and despite my own disconnection to it, to that symbolic Catholic faith that so many present felt, I am sure, in the most authentic of ways, I felt the presence of Love. Through twinges of anger, of loneliness, of even boredom (the kind that comes when words are said over and over, years upon years, signifying nothing), I felt the presence of Love pushing up against me. My shoulders hunched against it, this Love, at first and then they dropped as love bent its way around and over and under, Love that guides and comforts and sustains despite everything.

May we feel grateful to have shared a bit of that Love through Gus. May beautiful Gus rest in peace. May his dear parents feel Love every day for the rest of their lives.