The Blue Poppy and the Mustard Seed - Selections

A Mother’s Story of Loss and Hope

Chapter 1: Still Moment of Mystery

There is only one truth, one law, in all the world
and the six realms of existence, too:
all things are impermanent.
—The Buddha, to Kisa Gotami

I was changing my son Liam’s diaper when I noticed his left hand and part of his arm had started to turn duskyplum blue.

“Liam,” tears came again, “you have to let go now, baby.” My knees sank to the floor. I folded over the bed where he was lying and pulled him to my side. He was so thin it hurt me to hold him.

“Liam, if you need to go, you should go.” I had been repeating that phrase for forty-five days when I could gather the strength. Every day, I knew it might be his last. I gave him permission to die. Hospice workers and Tibetan Buddhist tradition say to do that so the person can have a peaceful death. I was desperate to give back something to Liam even if it was only a peaceful death. Every night as I held Liam bundled up between his father and me in bed I thought, Please not tonight. Just let him live until the morning.

Every morning I didn’t move until I knew that he was still breathing. Then I’d kiss him, and I’d think, not today. I hope he doesn’t die today.

When I saw his hand was blue I knew it wouldn’t be long. “You can’t hold on any longer, Liam. It’s time for you to let go.” My father-in-law, who is a heart surgeon, had told Chris, my husband, and me that Liam’s limbs might discolor eventually because his heart didn’t circulate enough blood.

My voice was soft and shaky like a butterfly flying against the wind when I finally got Chris on the phone at work.

“Chris, you have to come home. His hand is blue. You have to come home.”

“I’ll be right there.”

Chris had only been at work for a few hours, and it was only his second day back. He didn’t want to go back to work, but we had no idea how long Liam would live—and we had to reach for some normalcy, now almost seven weeks after his birth. When we left the Neonatal Intensive Care Unit at Emmanuel Legacy Hospital, Liam’s cardiologist had said, “If he’s still here in a week, call me. I’ll want to see him again.”

When Liam had been home a week we decided not to call the doctors anymore.

“Will they be able to tell you anything that will make a difference in his condition?” my father-in-law had asked.

“No,” we’d answered, remembering the grim diagnosis that was documented in his medical records:

The child has sustained extensive bilateral cerebral hypoxia. This seems to be a more global change that would suggest more of a global perfusion problem, rather than emboli . . . The prognosis, which is very limited for this child, has been discussed with his family. His prognosis is of such severity, I think the family should be apprised of this in order to make decisions on his care.

I would support their decision either way, to avoid futile care (in view of his very serious neurological findings) . . .

Futile care. That was the phrase that hit me the hardest. How could it make sense that medical care for any child would be futile?
 

I finished changing Liam’s diaper and swaddled him in a blanket. I put a hat on his head even though it was June 27. He should have been fat and warm, bouncing and giggling on my knee. Instead, I took his temperature every couple of hours to make sure it had not slipped below ninety-two degrees. If it were really low, Chris would unbutton his shirt and undress Liam to his diapers. Then they would lay, bare chest to bare chest, under the comforter, with the light streaming in the bedroom window, until Liam was warm again.

Liam’s eyes were dulled and glassy. He was somewhere trapped inside a body that, at the time of his birth, had looked perfect in every way on the outside. His skin was downy like a white peach. He had our coloring. His hair was amber, a subtle blending of his father’s auburn-brown and my strawberry blonde. When he was born a plump 7 lbs. 8 oz. he resembled me. Then his cherub frame waned to probably less than 4 lbs. I had books on my shelf that were heavier than he was in the end, when he took on the sharp angles of his father’s face. Inside—his heart and his mind, his wisdom and his skill—he had reached his fullest potential at almost seven weeks old.

“He won’t walk. He won’t talk. He won’t be able to feed himself. You will be lucky if he recognizes you as his parents,” Liam’s neurologist had said at our initial meeting. With each sentence he spoke, the tide of my blood pulled back. I felt my face blanch, and my jaw and body slacken. “He might not even be aware of his surroundings. And I’m not sure he’ll even be able to think. Let me make this really clear. I’m not talking about mild damage. I’m not talking about medium damage. This is severe.” His eyes were unwavering.
 

Chris arrived home. But that was all we could do—just be with him. I didn’t want to put Liam down. I sat in the white chair by the bookshelf and held him. I picked up a thin copy of The Life of the Buddha by Venerable Dr. Hammalawa Saddhatissa, and I began reading it out loud to Liam. I sat, and read, and held my son all day because I couldn’t bear to let him go. I didn’t know anything else to do. I didn’t want to do anything else. I didn’t get up to eat or pee. I sat and held my son all day. Chris was across the room sitting on the couch for most of the day too. I didn’t fully notice what he was doing. I just felt the barely-there weight of my son in my arms as I read to him about an ordinary person who had found a way, a path, out of suffering.

That night, I lay next to Liam on the bed. I turned on the TV that was at the end of the bed. I didn’t really want to watch TV. I just didn’t want to watch my son die. The square room felt like a TV screen. I watched from outside myself. I saw Liam on the bed wrapped in his blankets: motionless, silent, still breathing. I sat next to him, propped up on the pillows, and stared at the happy everything-will-be-okay-in-a-half-hour world on TV. I was still on the surface like a calm ocean, but underneath I was dark and shifting restlessly. I felt I should be talking to Liam. I felt I should be doing something. I felt I should hold him and comfort him. I flicked off the TV and turned to him. Each breath could be his last. I didn’t want to miss it, but it was too hard to focus my attention on him. I tried to talk to him.

“Liam, Mommy’s here. Don’t be afraid.” Hysteria rose to the surface of my voice like a shark with obsidian eyes. I gasped and choked on my words. I couldn’t talk to him and stay calm at the same time. I didn’t want to disturb his dying. I didn’t want to distract him with my moans and cries that might hold him to this imperfect body and world. I turned the TV back on and watched every crisis resolve on the half-hour. I floated above my grief. Chris was upstairs meditating. My son lay dying beside me. Though I couldn’t look at him, I felt the rise and fall of his breath throughout that Thursday evening, and into the night when all three of us curled up under the covers and let the dark of the room enclose us.

That night I didn’t make my panicked plea for one more night. I just pulled Liam close and whispered with my lips touching his soft cool temple. “Mommy has you, Mommy has you.” I wasn’t sure he could hear me, but I hoped that he could feel my words.

The moment of Liam’s death came gently near dawn as he lay on the bed between his father and me.

I heard a little whine just as I was beginning to doze off. I was instantly wide-awake. “Chris, turn on the light.” I looked at the clock; it was 1:58 am. Liam whined again softly. He took a breath, and then did not. I moved the blankets away from his body so I could see it. Chris and I were vigilant for I don’t know how long. Liam was lying on his right side with his right arm bent and his palm beneath his head. His left arm was folded across his chest with his other palm down on the bed. By chance it was the same position the Buddha was in when he passed into parinirvana. Chris and I were propped up on our forearms lying on our stomachs beside him. Liam’s belly and chest did not rise again. We were still. The world was still. It was the moment we knew would come. That mysterious moment that connects this life with the next. The only moment that all of us can be sure will eventually come someday.
 

We rose slowly and sat on either side of the bed. Every bit of warmth left his body as I sat reciting, as best I could, the Tibetan Buddhist prayers prescribed for the moment of death. I closed my eyes. I heard my cries as if from a distance. I forced myself not to cry so that Liam could pass away undisturbed. We didn’t touch him. I didn’t want to hold Liam back.

In that mysterious moment, this is what I remember seeing in my mind: There was amber light. There was warmth. There was a person with long hair and a beige dress with her back to me who squatted down, opened her arms, and scooped up a plump, pink, laughing baby who kicked and waved his arms. I thought the baby must be Liam though I didn’t completely recognize him in a healthy body. The woman walked away, carrying the baby who was looking over her shoulder. I felt calm. I noticed I had stopped choking on my dammed-up tears and gasping for breath. As I slowly opened my eyes I heard a small voice say, “Mommy.” With my eyes then fully open, a thought popped into my head. It was Liam, and he knew I would want to hear him speak just once. It hadn’t occurred to me until just then that I would never hear my son call me Mommy. And yes, I would have wanted to hear it. Those were things—speaking, laughing, thriving—that he would never do, no matter how long he lived.

I turned to Chris and looked over his shoulder to the clock. It was 5:30 am. Three and a half hours had passed into nothing.

“We should clean him up before he gets too stiff,” I said. “Will you do it? I can’t.”

Chris had to do a lot of things I was not strong enough to do.
 

Pretending everything was okay was something I could do, had to do sometimes, and was something I got good at faking for short amounts of time.

When Liam was four weeks old we had to buy him preemie clothes because all his newborn clothes, hand-me-downs from my sisters-in-law and crisp new outfits from his baby shower, were all too big. We went to the same store where we had ordered Liam’s blue-and-white gingham stroller with a chrome chassis and whitewall tires. The saleswoman recognized us. We had spent a long time with her while placing our order for the stroller and had spoken to her several times on the phone. As we looked through the small selection of clothes for premature babies she was silent. She didn’t congratulate us. She didn’t come over to dote on Liam. I could feel her sad eyes on us. She looked away when I looked up to meet her gaze. I tried to pick the cutest onesie from the sad assortment on the rack for my son who was not born prematurely—just dying that way.

Chris and I loved to push Liam in his buggy up and down Hawthorne Street by our home and pretend we were a normal family.

“Oh, he’s perfect,” the man at the Ben & Jerry’s shop said. He put his arm around the pregnant woman standing next to him and gave her a gentle squeeze. What we couldn’t see behind my perfect son’s soft, dark eyes was the tremendous global brain damage that robbed my son of the most basic of human survival instincts: to nurse, to cry, and to respond to the world around him.

“Yes,” I said to the man. “He’s perfect.”

We encountered another couple on the street. “Oh, a redhead. We have a redhead too,” said a woman holding their two-year-old. “Just wait till he’s this age,” the man gushed to us. “They’re such a blast.”

“We can’t wait,” we beamed back.

Some people did notice that there was something a little different about Liam. “What a cutie,” the owner of the bar on the corner said screwing up her nose. “He’s got some snot on his cheek, though.”

“No, that’s his feeding tube. He’s very sick.”

“Oh.” She didn’t skip a beat. “Isn’t it amazing what they can do with science these days?”

“Yeah,” we both said. We just smiled. We didn’t tell her that it was more amazing that science could do nothing for us, or for Liam. “So, have you adjusted to the shock of being new parents yet?” she asked.

Chris and I stared at each other looking for an answer. “I guess that means no,” she said.

We were in shock but not because we were “new” parents. Parenting a terminally ill newborn, assessing all the information the doctors delivered to us, and deciding what was best for Liam, we felt like we had done a lifetime of parenting in just a week. We had never had time to feel new.

Chris did, however, take care of Liam with the adoring attention that any new father would, till the very end.

Chris went into the bathroom and ran hot water over a washcloth to clean Liam for the last time. He returned and pulled Liam, who was still lying on the bed, a little nearer to him so he could change his diaper. Chris turned Liam on his back. I winced and turned my head away. The right side of Liam’s face and the corner of his right eye were dark cherry-red with still blood that had begun to pool on the side of his body on which he was lying. His eyes were basalt, skin like lilies-of-the-valley, lips the color of gray-blue flannel.

As I stood up I saw Chris cleaning Liam’s bottom, wiping away the tar-like excrement released when his energy let go of his body. Chris held Liam’s cold feet and wiped him clean with slow, deliberate strokes, taking care to make sure he wiped away all the dirt, just like he did every day in the same gentle manner. He did not grimace. If he was too overwhelmed, like I was, to touch his son’s cold, dead body he didn’t show it.

“I’m sorry you have to do that, honey,” I said, “I just can’t.” “It’s okay. He’s my baby. I love him, and I want to clean him.”

His voice was a thin trickle.

“I’ll call Sharon,” I said leaving them alone in the room. Sharon was Liam’s hospice nurse who came over every other day. She didn’t sound as if I’d woken her when she answered the phone, though it was dawn.

“Sharon, it’s Katie.” My voice was flat.

She said, slowly raising her voice to make the one word into a question, “Hi?”

“Liam passed.”

Sharon exhaled. “Okay. Do you want me to come over now or do you want some time alone with Liam?” She knew some people were afraid to be alone with their dead children. We had talked about what would happen when the time came. She had to come over to officially pronounce Liam dead

“No, you don’t have to come now. He actually passed away at 1:58, but we didn’t want to call you then.”

“Okay, I’ll come over in a couple of hours. Did you call the funeral home?”

“Not yet.”

“Do you need me to call for you?”

“No.”

“Okay, I’ll see you in a couple of hours.”

Chris called the funeral home. The man who answered told Chris that they wouldn’t be open till 9 am.

We were grateful to have a few extra hours with Liam. We lay on the bed with Liam between us.

“Maybe we should read him Horton Hears a Who! one last time,” I suggested.

Chris’s voice undulated with tears held back as he read. It was the story we read to Liam every day when he was hooked up to all the monitors and IVs for the first week of his life that he spent in the NICU, the Neonatal Intensive Care Unit. Chris dissolved into tears half way through the story when he read, “I’ll just have to save him. Because, after all, a person’s a person, no matter how small.”

We reached over Liam to each other, and cried, and waited.

Chapter 2: A Mourning Walk Around the World

We travel, initially, to lose ourselves; and we travel, next, to find ourselves . . . I travel in large part in search of hardship—both my own, which I want to feel, and others’, which I need to see. Travel in that sense guides us toward a better balance of wisdom and compassion.
—Pico Iyer

Chris quit his job as a brewer. I quit my job at the bookstore. We booked a trip around the world. I told everyone we were running away and tried to sound sarcastic, or matter-of-fact, or something that didn’t belie the blackness I felt. I wanted to walk away forever going nowhere, and lie down and die at the same time.

Everyone we told said, “How awesome. I wish I could go on that trip.” I wished they were going instead of me too. The trip didn’t seem as much like the privilege everyone thought it was, but rather a consolation prize, a gift given to the ones who have lost. We were setting off to wander, to remember together, gather sense, make account of the days we lived—as well as we could—with Liam waiting for the moment we’d have to let him go ahead, and to wonder together what life we would live next, having now let go of the future we planned. We could not predict what that life would be. We couldn’t see it from where we stood in such a cold, dark place. We had, I felt, to walk there.

It would be a journey further than I knew I could go.

With the awkward steps of a diver beginning a shore dive, looking backward at the shifting sands and struggling to find sure footing, we left Portland, Oregon, on October 18, 1998.
 

The night air was moist and sweet with plumeria blossoms when Chris and I made our way from the Kauai airport terminal to the Hertz office across the street. We rented a car and planned to save money by camping on the beaches. My throat was raw and painful. I was exhausted by the time we found our car in the lot of identical brown Chryslers. I lacked even the strength to muster much excitement about being in Hawaii, a place I had always wanted to go.

Hawaii was the first stop on our trip. We would travel from the West Coast of the United States all the way around the globe. With any luck, we would find ourselves on the other side of the enormous sea of grief surrounding us.

After we threw our packs in the trunk, I ran to the front of the car, out of sight, and threw up in the bushes. I pressed my forearm across my abdomen in a reflex motion to stabilize my C-section scar that was still raw, and new, and now aching from the violent spasms that purged half-digested airplane food and grief. I remembered thinking after we were told about Liam’s prognosis that I would have my scar longer than I would have my son in my life.

We made our way to the Kauai youth hostel. Since it was late, we would spend the night there rather than trying to make camp in the dark. We were not really in the mood to make a lot of chitchat with the other guests, which we would have usually enjoyed. I felt like I just needed some peace and quiet, so we agreed to splurge a bit and get a private room where we could be together rather than in bunks in two different single-sex dorms.

I switched on the light once we got into the room. The cockroaches were so bold they didn’t even bother to scatter, though there was nothing in the room to give them cover except for the sagging bed with sheets and blankets so dingy and limp they seemed to sigh. The rank smell of the room suited my mood. I slid the window open in its aluminum frame and dropped my body, still bloated from pregnancy weight, onto the bed. I let out a guttural moan and began to cry. Chris stood in the doorway as my grief swelled over him.

“What’s wrong?” he asked. His shoulders dropped.

“What do you think is wrong? My son is dead. My throat hurts. I’m tired, and sick, and this place is disgusting.”

“But you said you wanted to go on this trip,” he said, dropping his pack to the floor, letting it hit the ground hard.

“I didn’t say I wanted to go on this trip. I just didn’t want to stay home. And I don’t want to be here. I don’t want to be anywhere. I just want Liam.” My loud voice made Chris cringe. He quietly crossed the room, sat on the bed, slowly took a book out of his pack, and headed for the door again. At the doorway he stopped. He took a deep breath and reached out to me with his eyes, hazel like a sea darkened by an impending storm. But he turned and left me alone in the bare, dark room.

When Liam was alive, and slowly dying, our perspective was different. We didn’t argue at all; time was too precious to spend any of it fighting. Since Liam passed, there was a tension between Chris and me that was growing. The tension was like a towline on a boat moored on a pitching sea. We strained against each other’s hold, but it was that tension that held us together too. Without it, we both would have gone under in the force of the storm. We pulled and pushed against each other because it was the only way to stay upright at all. We were angry at life and at death, so we ended up being angry at each other.

When Chris came back into the hostel room I stirred from a half-sleep. I felt my eyes relax behind their lids when he turned off the light and came to bed. It was hard to be with him because there wasn’t much room in my world that wasn’t consumed with a deep sadness, but it was harder to be alone. He got under the covers. I whispered that I was sorry. He pulled me to him urgently; we kissed gently and his touch anchored me. The distant sound of the waves from the nearby Pacific calmed me. I dreamed of swimming in the ocean.
 

Most of the ten days we spent in Kauai we spent on the beaches doing nothing, and it was exactly what I wanted to do. We hiked the Awaawapuhi Trail in the Waimea Canyon State Park.

We camped on Anini Beach for the first night. It was a lovely park on a white-sand cove. The waves were gentle. A young family had set up camp there too. From the looks of their site with its makeshift kitchen and palm-thatched living space it seemed like they planned to be there a while. The young mother often sat at the edge of the sea, with the warm water lapping at her toes, while her infant suckled, I imagined, wetly, with urgency at her breast. Often, holding Liam in my arms, I had felt time biting urgently at my heart. His life had been full with meaning, even though it was as short as a Hawaiian sunset.

I was soon overcome with an aching sickness, which had started brewing when we first landed. My sore throat turned into a flu that made sleeping on the thin inflatable mattress unbearable. Despite the beautiful view from our tent, I had to get away. We spent two nights at the Mohala Ke Ola Bed and Breakfast. I recouped quickly, and we returned to our tent and a different site, Salt Pond Beach, for the rest of our stay.

We hired an instructor to teach us how to scuba dive and spent a day in the Outrigger hotel’s pool before going out for two days into the open waters. Chris and I had just passed the written test required as part of the scuba certification process and finished practicing in the pool when we drove out of the hotel driveway and passed a woman walking toward the hotel.

“Chris!” I startled him, as much as I myself was startled to see what I thought might be a hallucination, “I think that was our midwife. Back up.”

As he steered the car in reverse I craned my neck to see if I was right. Had I just seen the registered nurse and certified midwife whom I had seen for my prenatal care? She was present at Liam’s birth and assisted in his emergency surgical delivery.

The last time I saw her, she was holding Liam in her arms in her office, where we’d gone just to visit her, a week before he died. In her office was a print of what I remember to be a baby curled like a pearl in a shell. Yes, I had thought, looking at Liam curled in her arms saying unspoken good-byes. Yes, a jewel.

I couldn’t believe she was standing in front of me on that very small island in the middle of the ocean, just after Chris and I had passed our test and were about to set out into the deep waters that lay all around us.

She seemed equally shocked to see us as we pulled alongside her and I called to her through the window. I didn’t know what our unlikely meeting could have meant for her given the surprise and unfortunate outcome of Liam’s birth; for me it felt like a sign that Liam would always be held in the space between me and anyone I would encounter. We all exchanged greetings and wished each other the best before we set out in different directions. Chris and I were headed to explore a depth we had never known.
           

Underwater we had to learn new ways to communicate. There were only a few vital hand signals, which the instructor taught us: going up, going down, I’m okay, help, danger, out of air, go that way, hold hands, get with your buddy, you lead and I’ll follow, slow down. It was a simple language. Minimal. Only the important things needed to be communicated. Grief was a lot like being under the ocean. Things didn’t sound the same. The world moved more slowly. Simple objects were magnified; they signified something more than themselves. They seemed to communicate that there was another way to look at the world. Colors were intensified, or changed altogether, but so was the darkness. If I weren’t careful the pressure around me would crush me.

Underwater we had to be aware of our breath and the fact that it might run out. Under the pressure of my son’s absence I thought often about breath—his first, his last, and my own which was often stifled by sadness that was invisible and weighted like the atmosphere and the pressure of the ocean around us; our lives were running out like the air in our tanks.

The first time we went under and “blew bubbles,” it was in a spot by an abandoned pier called Ahukini. A man coming out of the water said he saw a tiger shark. Our instructor shrugged him off and told us not to worry.

“You never have to outswim a shark,” he said. “You just have to outswim the slowest swimmer.”

We laughed more out of courtesy than genuine cheer as we geared up.

“Seriously,” he said. “That guy is a chicken. Sharks are afraid of divers because of all the bubbles and gear. If one does come at you, just hit it; they want an easy meal, not one that puts up a fight.” I wondered if I would be strong enough to fight off anything. Had the Buddha’s teachings geared me up for what I needed to swim through? I was laughing, but inside I was fighting back a shifting fear of that restless imagined predator.

We all did our buddy-check: buoyancy, regulator, weights, air, and final check. We climbed down the rocks and eased into the Pacific. The water was murky and dark. The posts of the piers were overgrown with long green algae that danced in the current, which pulled us out from the cove, carrying me away, past the pier and the rippled sand bar into the pale green water. When I checked my gauges, I was surprised to see we were already at thirty-five feet.

Okay?” signaled the instructor.

I’m okay,” Chris signaled.

I’m okay,” I signaled.

Neon purple and yellow fish swam by. I was suspended between the surface and the bottom where the water was as warm as a womb. The current rocked me, and as far as I could see there were rippling flats of sand and clear water. A small school swam under us; they were black with white polka-dots. The smallest one in the bunch had light-colored eyes. He seemed so curious but calm and as we swam and hovered over him he just looked at me as if, weirdly, he was checking us out as much as we were him. I could hear my breath sucking in deeply and gurgling out through the regulator. It sounded like the respirators in an NICU. Being underwater, under pressure, created a measurable awareness that at any given moment we could stop breathing. I checked my air gauge. It was half full. Below my feet an enormous conch shell rested on the ocean floor. Here on the ocean floor, as low as I could go, was a symbol of the truth of Dharma that spreads in all directions like the sound of a conch horn blaring.
 

The next day off a sandy shore we walked straight into the sea. The water was clear: cyan, azure, and sapphire, baby blue, sky blue, Blue Poppy blue. We went to forty-seven feet.

Look that way,” signaled the instructor.

A giant turtle was swimming toward Chris and me. I was transfixed for a minute until I realized the turtle was not going to stop. I looked at Chris; his eyes were as big as sand dollars.

I signaled, “Get with your buddy.”

Hold hands,” signaled Chris.

We got out of the way as the turtle, which must have been four feet in diameter, glided by. There was only a small space between us. He was old; I’m sure he had seen many people—all kinds of creatures—pass.

I could have stayed underwater forever. In some ways, over the next few months, and the years beyond our global sojourn, I did. Those diving lessons served us well in the next nearly three months while we were submerged in sadness and travel. Chris and I had little need for words. We signaled to each other in a world full of signs, looking—hoping—for a small amount, if only the size of a mustard seed, of comfort.
 

In the time of the Buddha, a young mother’s son became very ill and died. She was overcome with grief. She went to the Buddha and asked him to bring her son back to life. He said he would help her, but first she had to bring him a mustard seed from the home of a person who had never known anyone who died. She had hope and set off. She searched through many villages and for a long time no one could give her what she thought she needed. Finally she found what the Buddha had really sent her to find, the truth that he was trying to teach her: the truth that she wasn’t alone in her suffering, that death comes to everyone. She brought her son’s body to the charnel ground and let him go. She returned to the Buddha and told him that she had found the real cure that he was offering her and asked him to be her teacher.

As Chris and I set off for Southeast Asia and the land of the Buddha after our short campout on the shore of our past, I wondered what I would find. I wondered if I would be able to let go. I wondered if the truth that the Buddha taught would be enough to help me. I was in search not of the reason why, but of the reason why not. Why not give up if life is only suffering?

 

How to cite this document:
© Kathleen Willis Morton, The Blue Poppy and the Mustard Seed (Wisdom Publications, 2008)

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