Bruises

There’s a tension that exists around certain memories of Alvin. Tension between periodically seeking out those memories while at the same time pushing them away. Like fingers moving over a bruise, pressing firmly enough against the skin to remind yourself that you can still feel it, but lightly enough to avoid the sharpest edges of pain. These are some of those memories.

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The evening of January 3rd, Alvin seemed particularly restless. The past few days he had seemed unhappy, but we had noticed periods like this, without any drastic changes, at various intervals throughout his life. We learned to avoid over-analyzing them, particularly since there was little for us to do in response.

That night Alvin and I were alone in bed together. Cooper was sleeping on the couch in Henry’s room, as we had long ago come to the realization familiar to many parents that occasionally giving up staying in our room together and taking turns sleeping on the couch was better than both of us always stumbling through life on constantly interrupted sleep.

Alvin seldom slept for more than 3 hours at a time, but tonight was different. As the night went on he became increasingly unsettled. He cried out, over and over again, in a raspy voice until he was almost completely hoarse. We had never needed to call hospice before, except for coordinating our scheduled visits, but that is what I should have done that night. Instead, enveloped in the haze of months of lack of sleep, I comforted him as best I could, passing the night with the familiar sense of moving in and out of sleep and wakefulness, never fully inhabiting either. I don’t feel guilt about that night, but I would absolutely change it if I could. In quiet moments since then, I’ve whispered “I’m sorry” many times to him for those hours.

In the morning, Alvin seemed more calm, or at least he was exhausted enough that he was able to sleep a little more. I called his cardiologist’s office as soon as they opened and made a 10 am appointment for that morning. When I brought him in, the cardiologist looked sober. “My guess would be maybe about a week,” he said gently. I don’t remember if I cried or not. There were many times that I cried in those sorts of situations, but many more times when I felt like I should be crying but did not. I left the office and was soon able to get in touch with Ashley, our hospice nurse. All those months of biweekly hospice visits had seemed unnecessary at times, and now, for this one day, they all felt worth it. Ashley made plans to meet me at home to start a morphine dose for the first time and set up Alvin’s oxygen, from the oxygen canisters that had been sitting in our closet, untouched, from the first day that we brought Alvin home from the hospital. I called Cooper to update him. He asked if he should come home early from work, and texted me the same question throughout the day. I kept saying no, thinking that we were about to settle ourselves in for a long, slow week.

After Ashley helped me set up the oxygen and left, Alvin alternated between fighting the nasal cannula and relaxing into well-needed sleep.  Henry was away with Cooper’s mom, and I remember the sun through our bedroom window and the quiet sense of relief in the late afternoon as I lay next to Alvin on the bed. In that moment, and in so many others, my emotions were numbed by the fatigue that had soaked into the deepest parts of me. A small part of me wishes I could have felt everything more intensely, while a larger part of me is grateful that I was not able to. I wasn’t acutely aware of every sound of my son’s breathing, every fuzzy hair on his head, the soft skin on his cheeks, but I was there with him, and that has to be enough.

Cooper came home from work a little early, and Cooper’s mom dropped Henry off shortly after that. Alvin continued to sleep, with brief periods of wakefulness in between. I eventually went downstairs and Cooper, Henry, and I ate a quiet dinner together. One of the cruelest parts, for me, of caring for a terminally ill child is that although your heart fights for them always, your body can’t help but savor the peace that is found in moments when they are absent. And then your mind, unbidden, imagines what it would be like without them: a far less complicated life. While your heart knows that life can never be completely satisfying without them.

We put Henry to bed, bringing him into our room to say goodnight to his brother. As Cooper was settling Henry into bed, Alvin was starting to cry in his raspy voice again. Having promised myself to never let him go through another night like the one before, I called hospice right away and they sent out a nurse to assess him and eventually help me give him another morphine dose. The nurse left around 6:00, and Alvin seemed more relaxed after that. I sat and watched him sleep as Cooper joined me in our room.

Sitting on our bed together, we noticed that Alvin’s breathing was becoming more irregular. He would flutter his eyes, waking briefly, and alternating between shorter breaths and deep, intermittent ones. I looked at Cooper. “I don’t know if he’s going to make it through the night,” I said, not believing that I could be saying those words. Cooper didn’t say anything but moved closer to both of us.

Alvin’s breathing continued to change, and for brief periods of time it seemed like he had stopped breathing before he took another deep, ragged breath. I asked Cooper to play some music, and he chose the Pandora Hymns station that we had played in the hospital in the hours right after Alvin was born. Alvin wasn’t fully asleep, and his eyelids would occasionally flutter open, so I repeated quietly over and over “I love you,” hoping he could hear and understand, unsure of what else I could possibly say. I felt both calm and panicked. My son was truly “slipping away” and I could barely grasp the reality of each second before it had passed by me. And then, just a little after 8:00, Alvin took a breath and then did not take anymore. His small, perfect, dear little body was still with us, but we immediately felt that he had left. Cooper and my tears that night were the deepest, most agonized kind. We held Alvin only briefly before wrapping him in his muslin swaddle and putting his knit hat with the bear ears on his head. I loved what was left of him, but I didn’t want to know it without my sweet, shy, feisty boy’s spirit inside. We laid Alvin in the wooden cradle next to our bed. It was a cradle for a newborn, but Alvin stayed so small that it still fit him well as a 10 month old. One of the few things that made it easier for me to let him go was seeing how much he had outgrown that tiny body. It wasn’t enough for him anymore. There was so much Alvin in such a small container.

Then we slept, with the wooden cradle next to our bed. I don’t know how I was able to sleep so well that night. Partly, of course, I had been aching for sleep for months. But more than that, Alvin’s journey with us was finished. There was no more need to give him our absolute best, or at least what we prayed was our best. He was resting after his unforgettable 10 month adventure here on earth. I wish that I could say I had visions of Alvin running and laughing with Jesus. But the reality is that Alvin is so completely absent from anything that I can experience that it is difficult to imagine him fully present anywhere else. The best that I can do is remind myself that I can’t believe I got to be his mother. And that I got to be his mother for longer than anyone could have imagined. And that, despite all my questions and confusion, I do trust the God who said “let the little children come to me” to take care of a certain brown-eyed, fuzzy haired baby.

 

 

A multitude of kindnesses

This is a list of some of the acts of kindness I received after Alvin died. I am writing them down both to cultivate gratitude and as a reminder to myself for the next time grief inevitably strikes someone around me. If you or someone you know has experienced grief, I would love it if you would comment on actions that have been helpful to you or them. I’d also love to hear thoughts or questions you have had as you seek to reach out in practical ways towards those around you who are grieving. I will phrase this list in terms of how these actions relate to me specifically, but I have a hunch that they would relate to many others who have experienced loss as well.

  1. Talking about the person who died. Although I always appreciate someone asking me how I am doing, the absolute best comment is for someone to say that they miss Alvin, or to share even a small memory of Alvin. The very best thing anyone can do is talk about Alvin. The very worst thing anyone can do is to never mention him.
  2. Freedom from expectations. In the early days after Alvin’s death, I felt that many relationships were one sided, with people sending cards, texts, gifts, and prayers and me often feeling too overwhelmed to respond. I know that most of those people didn’t expect a response from me, but I loved the times when people made sure to emphasize that to me: that they didn’t expect to hear back from me, or receive a thank you from me, or use the gifts that they gave me if I didn’t find them helpful.
  3. Flowers. Beautiful flowers are always appreciated. I also received two separate gifts of flower bulbs, paper whites and tulips, to grow indoors. The bouquets of flowers made me a little sad, because I knew when I received them they were at their peak and were starting to die. But watching the bulbs grow and become more and more beautiful and alive made me so happy.
  4. Food. The ultimate practical gift. I particularly appreciated healthy food with fruits and vegetables, because it made me feel like my friends were helping me take care of my body when I didn’t have much energy to give to it.
  5. Scheduled time with friends. In the beginning, I only wanted to spend time with Henry and Cooper. This was natural and healthy, but I knew that if I isolated myself from other people for too long I would fall apart. One friend asked if she could come over, bringing lunch, two days a month. Having this time scheduled in advance meant that I could anticipate it, and kept me from saying no to a spontaneous offer. I was always so glad after each of our visits that we had been able to connect.
  6. Creative expressions. A friend brought paper lanterns to release into the sky during one of our memorial events for Alvin. Side note: I appreciated that she asked before bringing them to the event. My sister ordered a memory card game for Henry with adorable photos of Henry and Alvin together. Before Alvin died we received other gifts that are even more special now: a wooden box with an “A” on it, a necklace with his name and Henry’s name, a canvas with a meaningful verse, a little wooden train that spells out the letters of his name. Most meaningful: a photographer acquaintance (not even a close friend!) volunteered to take pictures of our family at two different points during Alvin’s life. With everything going on with Alvin’s illness, I had no energy to initiate arranging for photography. This person approached us, and all I had to say was yes and find a date. Now of course the pictures are priceless. Even if you are not a photographer, maybe you could set this up for a friend if appropriate. One last note on gifts: this sounds silly, but everyone likes to remember and honor in their own way, and I think it can be helpful when giving a gift to communicate that you will not be hurt if the person doesn’t keep or display your gift as you intended them to. I sometimes need to remind myself that my motivation for giving someone a gift should be to make them feel loved, and how they use my gift doesn’t necessarily have any reflection on our relationship.
  7. Pictures. We sent out photo cards with a picture of Alvin and a favorite verse after he died, and seeing those pictures on the fridge or bulletin board when we go to houses of friends is the sweetest, most comforting feeling. It is a way that we feel reminded, even though not by words, that you haven’t forgotten. Side note: we still have many of those pictures that I would love to send to you or to anyone you know who knew or prayed for Alvin!
  8. Dates. Birthdays, anniversary of death. I could never remember those on my own; I put the birth date of a friend’s family member who died in my phone calendar. Go ahead and put it on repeat for the next decade.
  9. Texts. So simple, so easy. A college friend, who I hadn’t kept up with regularly, sent me many texts during Alvin’s life and after his death. Even if I didn’t respond she would continue to text me periodically. I appreciated each one. Some friends didn’t know what to say in person, so they sent their thoughts in a text. For me, that is absolutely all I need. It doesn’t matter the mode of communication, as long as you communicate.
  10. Attending memorial services. Prior to Alvin’s memorial, I might have thought that you only go to memorial services to support family members or close friends. I suspect other people our age might think the same. If you are able to go, then go. It doesn’t matter if you aren’t that close to the person, or if they don’t see you at the service. This week I met one of my grandmother’s friends, and she mentioned that she had been at Alvin’s service. I was so grateful. Cooper didn’t say so, but I know that he would have been so hurt if his coworkers hadn’t attended the service. During the reception after the service, one of his coworkers made sure to point out a whole table of them sitting together.
  11. Children’s artwork. We received several cards and paintings by young children, usually addressed to Henry, but I appreciated them greatly. Some of them included words or pictures that were not quite in tune with proper etiquette for a sympathy card, and these I appreciated the most for the way they made me laugh in weeks that were full of tears. Children’s artwork reminded me that death is both a simple, harsh reality and a confusing, spiritually complicated experience at the same time. It reminded me that most of us aren’t very eloquent in talking about death, and that a simple “I’m sorry” is always an excellent choice.

There are many other ways that we experienced, and continue to experience, the kindness and generosity of others. The most significant aspect of all these actions is that many of them were done by people who desired to love us because of their love for Jesus, and who would say, as a friend did when I thanked her, “thanks be to God for any and all overflow of Him in my life.” In the times when God feels distant or even cruel, I look back at the love given to us by people who have the Spirit of God active in their lives and my faith is steadied, even strengthened.

 

 

 

OT visits

When Alvin was assessed by the local Early Intervention team and qualified for Occupational Therapy, I felt a shift in how we were approaching his care. Instead of only palliative care, we were introducing therapy. Up until this point, our goals were to keep Alvin comfortable and stabilize his health as best we could. Now, we were expecting him to gain skills, to actually see positive changes instead of simply delaying negative changes. I was both nervous and grateful for this new approach.

Wednesday afternoon at 2 o’clock was our weekly OT session. I would put Henry down for his nap after lunch, and the house would quiet and the afternoon seemed to slow. Alvin would usually be resting on a blanket on the floor, watching me as I put away the lunch dishes, swept the floor, and vacuumed the rugs. When the house was clean, I would settle down on the floor next to Alvin, to hold him or feed him his bottle as we waited for Erica to arrive. I would dim the living room lights, pull up the shades on the front two windows to let the afternoon sun warm the room.

Erica always spoke in a lowered voice when she arrived, sensing the quiet stillness that Alvin and I were enjoying. She was both warm and professional, friendly but calm, happy to speak and happy to be silent. Alvin adored her. He was quick to smile at anyone, and loved when the conversation was directed towards him. But with Erica, there was something else. He could be restless and fussy during the day, but when she arrived he would be all smiles. He chattered and squeaked and hummed more when she was around. At the end of the session, his eyes would often be fixed on her as she sat nearby, writing out a visit summary of our afternoon.

Erica and I sat, cross legged, on either side of Alvin on his blanket on the floor. I would support Alvin’s back as he sat in front of me, while Erica enticed him with a rattle or ball, holding it above his head, moving it from side to side, or placing it on the floor in front of him. Alvin was eager to reach for his toy, stretching his arms and twisting his fingers around the edges. Erica made note of and praised all his small improvements; moving a toy from his left hand to his right, shaking a rattle up and down, holding a block with both hands. She taught me to look beyond Alvin’s obvious physical weakness, to study each movement and gesture, to delight in his nimble fingers and flexible wrists.

I learned to guide Alvin to the floor, to cheer him on as he strained to roll over, to give him just enough support on his lower back to help him be successful without taking away his sense of accomplishment at the ability to move his own body. Alvin seemed to be getting stronger, and he was able to hold his head up for longer periods as he lay on his stomach. Then, in November, after a prolonged cough, his progress plateaued. He could still roll over, but he was reluctant to, and instead of straining for the toys outside of his reach he would squawk in frustration, and give up. I was disappointed, and Erica didn’t deny that he didn’t seem as strong as he used to. She shifted her focus to his fine motor skills, encouraging me to guide Alvin’s hands as he hit two blocks against each other, or slapped at a book as I read to him, learning about cause and effect and his own power to create sound. Erica assured me that all these developments were precursors to waving and clapping.

I started to tell Erica observations about what Alvin had done that week. His little croaky voice saying “mama” while I sat eating breakfast. The way he shook jingle bells in time with the guitar chords that the hospice music therapist played for him. How he seemed to be doing better with eating the pureed peas I fed him. And Erica was always interested and delighted. She called Alvin “sweetheart” and laughed at him for always chewing on the toys she was trying to get him to reach for.

Those Wednesday afternoons, I didn’t think about entertaining Henry or cleaning the house or what I was going to make for dinner. All I thought about was Alvin, and how good it was to sit with him and be in his company. I studied him more closely than simply assessing whether he was happy or hungry or cold or tired. I noticed every movement and gesture, I calibrated each challenge to just beyond his comfort level, I praised every success and comforted him when he became too frustrated. And Alvin loved it. Under Erica’s coaching, that hour each week was completely our time together. It is one of the experiences I will miss sharing with him the most.

 

 

Five months

The room is dark now, except for our bedside lamp, its paper shade sending streams of light through the cut outs of birds and flowers and leaves. My face is close to your small one as your eyelids lower and then open again, fighting against the sleep that is drawing you in. I too shut my eyes, ending the flow of images of the day, taking you in with my other senses. Your tiny hands paw at my face, your movements an inscrutable merging of involuntary and purposeful. Your breath, warm, always a little too rapid, meets my cheek. Your squeals and grunts and huffs and hums come from a place where language is only a small seed, waiting for its time. But I understand you. All day long I watch you, my eyes at times resting on you for minutes, other times a quick glance to make sure all is well. But now, at night, my eyes closed against all the activity of the day, I don’t see you as much as I experience you.

I think of the times in the doctor’s office that I laid you down on the table while they placed a cold probe on your chest and peered right into the depths of you. They looked into your heart and saw what was broken. With their mouths they spoke of you in clinical definitions, with their eyes they said “hopeless cause.” They saw right through you, and they didn’t see you at all.

I know you. No one but God himself knows you better than I know you. Our faces are close enough to feel each other’s breath, and yet between us lies hope and disappointment and life and death and guilt and joy and confusion. Our lives are no less intertwined now than they were when I carried you inside me, literally sustaining your life. So much hangs in the balance in these next months with you. What will never change is that you are mine, part of me, an 11 pound, 8.5 oz piece of my deepest longings, my most unutterable secrets, my firmest beliefs, and my most convoluted thoughts. You are part of me, and yet completely, utterly separate from me. As you finally succumb to sleep, I whisper what I know deeply to be true. I love you, forever. 

One month

Tomorrow will be one month that Alvin has been with us. One month of celebrating each time we run out of diapers, of smiling across the table at the sound of both boys crying at once, of little flutters of relief every time I lay my hand on his chest and see that yes, he is still breathing.

Everyone asks, their voices swelling with kindness and compassion, how I’m feeling. I truly and honestly don’t have the words. Joy and fear and amazement and frustration and sadness and exhaustion and humility and guilt are so intertwined and I don’t have the capacity or the desire right now to sort through them.

A few people have wondered, although acknowledging that we must be thankful for the time with him, “doesn’t this make things harder, now that you’re actually getting to know him?”

I don’t know whether it is harder or not. It feels like unexpectedly having a series of warm, mild spring days when you thought all that was ahead was a long, gray winter. When daffodils and hyacinths are starting to bloom and you stare at them with wonder and delight while at the same time worrying that the weather will change again and the frost will be too much for them. When you’re not sure if you should get used to wearing sandals and sundresses or keep your heavy sweaters close by. When you know how hard it will be if the temperature suddenly drops again, but the sun on your face and the warm grass under your feet feel so good you want to believe it will last forever.

I look at Al’s face as I hold him, his nose so much like his brother’s, his full head of dark hair so different from him. He is completely helpless. And, painfully, so am I. I want to protect, predict, and guarantee. But when I see his purple toenails and feel the irregularity of his breathing, I’m reminded how hard his little heart is working to pump oxygenated blood through his body, and wonder how long it can sustain him.

We pray for healing. We know our God is powerful. We have read the stories. Stories of waters parting, lions’ mouths closing, leprosy and blindness and lame limbs and chronic bleeding being healed. Stories of death itself being overwhelmed and conquered. But we don’t see this happening in our neighborhoods or our city. When we tell Alvin’s doctors we are praying for a miracle, their smiles are tender. I feel like I might as well have told them that I believe in fairies. Someone reminded me of the verse from 1 Corinthians 1:27: “Instead, God chose things the world considers foolish in order to shame those who think they are wise. And he chose things that are powerless to shame those who are powerful.” I’m pretty sure that in the minds of the fetal cardiologists at the Children’s Hospital of Philadelphia, there is nothing more foolish than gathering a group of people to pray for an infant with hypoplastic left heart syndrome and a highly restrictive atrial septal defect who is considered a poor candidate for the staged palliative surgeries and is at home with hospice care.

And yet we pray anyways. When I pray with others, begging for Alvin’s life, I realize that it is no longer only me who is vulnerable before God. Everyone who enters into this mix of joy and desperation with us is opening themselves up to great disappointment. It is far easier to keep an emotional distance than to come before God, knowing He is “good” (whatever that actually means, and I don’t mean that flippantly), yet knowing that He might not give us what we’re asking for. Am I prepared to still love and obey God even if I experience that level of devastation? How dreadful, yet at the same time, what an act of worship. It seems to me to be a tiny drop drawn from the same deep well of unconditional love that we experience from our Lord every day.

Hope is both beautiful and exhausting. Sometimes choosing hope feels like keeping your muscles flexed, like continuing to run instead of walking. Maybe there will be a time for tears and grief. But not now. I’m so grateful to the friends who say they can’t wait to meet Alvin next week, or babysit him next month, or take pictures of him when he’s one year old. Thanks for being hopeful with us. For willing to be foolish with us. If there comes a time to grieve, please grieve with us, and continue to love Jesus with us. But for now, please continue to ask.

Emmanuel

The wreath on our door is dying. The dark green edges are fading into pale browns and yellows, and little bits of pine fall to the ground each time I leave our house in the morning and return home in the evening.

I should throw it away, but I still remember how it looked the week before Christmas when I first hung it on our weathered front door, fragrant and bushy and festive. Every time I walked by the wreath, or the little lopsided fraser fir in the living room, or the cinnamon candles on the kitchen windowsill, I hummed the song: “unto us a son is given, unto us a child is born…” This year, those words reminded me of Jesus, Son of God, and also of my own son. I hoped that a promise given thousands of years ago to a people worn out and discouraged by oppression was also true for me, holding on to a slim hope that a baby boy with only half a functioning heart would be born to us, alive and well.

Christmas is over a month behind us now, and my wreath is deteriorating while my belly continues to grow. All there is to do now is wait. Unto us…God, let those words prove true.

need

I prayed a brief, distracted little prayer last Sunday at church. “Lord, I need to need You.”

Yesterday, driving home from the hospital, I wondered if I could take it back.

Tears are by no means uncommon for me, but with my first pregnancy, and now this second one, I sometimes wished I would be a touch more sentimental and emotional. The idea of an ultrasound wand gliding over your abdomen and seeing straight through skin and muscle and bone until the monitor flickers with images of a tiny, 8 ounce person floating around in a dark, watery world is as beautiful as it is strange. But instead of tears, I felt calm, happy, and content at my first glimpse of this new person, already one of the most important people in my life even though we have never looked one another in the eye. I laughed when the ultrasound tech tried to give directions to someone who might as well be in outer space. “Baby, can you please move your hands?” As if in irritation, the baby’s arm moved in a jerking motion across the little face, a move I recognized all too well from my toddler’s increasingly opinionated rejection of food at the dinner table.

When the tech finally finished, I waited on the table in the dark room for the doctor to come in and repeat a few images and discuss the results with me. The doctor was business-like, and the room felt quiet after the chatter back and forth between myself and the tech. I didn’t mind, though, since this appointment was running long and I needed to get back to my sister’s house to pick up my son.

The doctor abruptly set down the wand and looked at me. “The problem we’re seeing here is…” At those words my stomach clenched and I don’t think it has relaxed since. The left side of the baby’s heart was not contracting at all. Apparently this was ok in utero but would be a serious problem after delivery. I blinked over the phrases “multiple surgeries” and “heart transplant” but the tears didn’t start streaming down my cheeks until he talked about referring us to CHOP in Philadelphia. CHOP was where your child went when they had a serious problem. The idea that we would have to leave our little city, our home, where Henry was born, to drive even just an hour and a half to Philadelphia seemed so drastic to me. I looked down at my abdomen. Irrationally, I wondered how someone so small, not even fully formed, could have a problem of this degree. It felt like this little body wasn’t big enough to contain something that could cause worry and trouble of this magnitude.

I discussed more information with the doctor, called Cooper, made arrangements for additional appointments, and had my blood drawn to determine if the baby had any genetic defects that could be causing the heart problem. Through it all, I had a vague reel running through my mind of myself, finishing up the ultrasound with just a few brief words with the doctor, worrying about getting over to pick up Henry on time, calling Cooper after I got home to tell him about the baby waving their hand just like Henry and how I was pretty sure we were having a boy since the ultrasound tech kept telling me to close my eyes since the baby was “in a revealing position.”

It was on this drive to pick up Henry and the subsequent drive home that I remembered that brief prayer from church. Maybe I don’t actually want to need God. It would be nicer if life stayed kind of how it is now, challenging at times but not really anything I can’t handle. Or at least, nothing I can’t handle if I am content to stay the person that I am now.

As I write this morning, I realize that I’m a little angry with you, God. It’s one thing to give Cooper and I, mature (sort of) adults, a challenge like this to navigate. But to allow something like this to happen to a little baby who hasn’t even been pushed out into the real world yet seems harsh. Trying to put things in perspective by thinking of families we know whose children have also had health problems before birth, some devastating, doesn’t really help. Because even the mildest of problems, even a missing finger or toe, seems out of place and cruel in someone so small and delicate and new. Like forcing your guest to scrub the toilet as soon as they walk into your house. Let these little babies at least settle into this beautiful and turbulent world before saddling them with some problem too big for them to handle. Not to mention the ones who don’t even make it into this world, or who leave shortly after they arrive.

Psalm 139 says:

“For you created my inmost being, you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made: your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

Lord, how can you be knitting this body together inside me and allow it to not be perfect? Did your fingers slip when you made this little heart? Can you possibly bring enough good out of this situation that justifies the pain and the fear? What if you’re creating someone who is going to need you, desperately, from day one in a way that all of us need you but in a way that is clear even to my myopic eyes?

I think my definition of wonderful might be different than yours. I say that we should value and celebrate those who might not fit our shallow idea of perfection, and I mean that, but when it comes to my own baby of course I desperately want a healthy, happy child like Henry. Teach me to love this baby the way you do, when you see their unformed body as you weave them together. Please, please restore them to full health. But help me to see them as wonderfully made, not as a checklist of normal and disordered but as a person made in the image of the Holy God. Just as I surrender my own life to you, I surrender the life of this baby to you. I need to be guided by the truth of your word, to be made bold by your holy spirit, to see those around me with love and compassion the way you do, and to praise and trust you in all things. I need you.

The Home Visits

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I slipped off my dirty sandals and stepped onto the cool tile floor of the clinic. I chose my clothing to try to stand out as little as possible: a dark, solid colored shirt and a long blue skirt that falls, unfamiliarly, to my ankles. But when I met the Zambian health workers, my blonde hair and fair skin made this seem a laughably futile attempt.

“You will come with me today,” said one of the oldest women. Annie had a loud laugh, two missing front teeth, and perfect posture. She was wearing a black blazer with her dark purple shitangi, a 2-meter length cloth that functions as a skirt, baby sling, padding on the top of the head when carrying a bucket of water, and I’m sure multiple other uses that I have not yet seen.

“This morning we will visit 4 homes,” Annie told me as we leave the clinic and make our way down the dirt road. “The families are all part of the feeding program.”

I nodded. I observed the feeding program yesterday, a group of 19 children brought by their mothers, aunties, or grandmothers who gathered to be weighed, to hear a short bible lesson and basic education on malnutrition and healthy eating, and to receive their weekly allotment of eggs, peanuts, fortified rice, and milk powder. The image of the two year old who barely reached the 7 kilogram mark on the scale was still fresh in my mind.

Annie turned sharply off the main road and up a steep bank of sand. I hurried to keep up, legs churning. When I arrived in Zambia I had expected the country to be lush and green, but this was the dry season and all around me was bare sand punctuated by sparse dry grass and the occasional tree. I was entering my second week in Mongu, and had not seen a single cloud.

I noticed I had fallen a few steps behind Annie as we reached the top of the sand bank, and I quickened my pace. Annie smiled. “Maybe it is too much walking?” she asked. I shook my head no. Remembering that Annie was a kuku, a grandmother, I let my breath out slowly, trying not to pant as I replied, “Oh no, it is fine.”

Annie stopped in front of a small house. The walls and roof were bunches of reeds tied together. In the bus on our way to Mongu a little over a week ago we had passed many of these reed houses and I had been convinced they were only temporary shelters, maybe rest areas for the herders who traveled around with clusters of small, long-horned cattle. I now knew they were the permanent homes of the poorest Zambian families, the ones who could not afford concrete block or even mud and reed construction.

Annie called out a greeting in Lozi and three children emerged. Annie spoke to the oldest girl while the two younger boys stared at me. I smiled and waved and after a moment they grinned back at me. The youngest boy was carrying a brand new toothbrush, with bright white plastic that was jarring against the muted colors of the reed house, the sand, and the dusty black of the children’s bare feet.

Annie turned to me. “The kuku has gone to get water. So we will not be able to see her today.” We waved at the chilren and continued on our way, soon reaching the paved road that connected Mongu to the rest of the country. Relieved to be out of the sand, I matched Annie’s stride more easily now. It was still early, maybe a little after 8, and the sun had not yet been up for two hours. We passed women carrying loads of water or charcoal on their heads and babies in colorful shitangis on their backs. Men pedaled by on bicycles, and minibuses and trucks, both equally overloaded with passengers and freight, churned past us.

A few vendors dotted the roadside, small tables with a dozen or two tomatoes, little charcoal grates roasting cassava roots, and bowls full of fritters, glistening with oil. Many women recognized Annie and she stopped to greet them and chat briefly. The women gave me wide smiles when Annie introduced me and quickly exhausted their English vocabularies: “How are you?”, “I am fine,” and the occasional “You are welcome here.” English is Zambia’s national language but in the rural communities on the outskirts of Mongu the level of proficiency is markedly lower than in the cities. It seemed unfair, somehow, that as a foreigner I was more fluent in the Zambian national language than many of its own people.

I could see a crowd gathered on the side of the road ahead of us, and as we approached we saw a minibus sprawled on its side, windows smashed and a gaping hole in the roof. I wondered what kind of a driver could have an accident on this flat, straight road with no intersections. Annie lingered for a few minutes, asking questions of a few women who were on the fringe of people staring at the damaged vehicle as if it was a fallen elephant. She didn’t stay long, and once we were headed away from the crowd I asked her what had happened.

“There were two thieves who stole cows from a farmer,” she said. “They cut off the heads of the cows and put the cows on the minibus and were going into town.”

“How did the minibus crash?” I asked.

Annie paused. “The farmer, he put some… medicine… on the cows.”

I thought of the small museum we had visited near the palace of the Lozi king, who was the traditional leader of Mongu and the rest of the Western province. In a glass case were twisted, dark objects made of bone and hair and wood. Defensive objects meant to protect, and offensive objects meant to hurt. I thought of the small knife with the neatly typed placard next to it: “made from the arm bone of a child.” An ugly wooden cane with the carved faces of three women was used: “to cause miscarriage.” Even the memory of that cane made me shiver and touch my abdomen, slightly rounded in my 10th week of pregnancy, as if something from that object, simultaneously both preposterous and powerful, could seep out from behind the glass and attack.

I connected the dots of what Annie hadn’t quite told me. “So because those men stole the cows, something bad happened to them?”

Annie gave a short laugh. “You know how we are in Africa.”

I didn’t know, not really, but I nodded.

We reached our second house and once again Annie called out a greeting. This time the mother was home, and we ducked under the grass roof and stepped inside. The small house had a dirt floor and was divided by a sheet that hung as a partition. Annie and I sat on wooden chairs around a low wooden table. The mother sat with us, as did another woman who Annie told me later was the woman’s sister. The mother spoke quietly, looking down at her feet. Her toddler sat on the dirt floor behind her, playing with a sleeve of small blue pills. Annie snatched the pills from the toddler with an exasperated expression. She asked the mother a question, and the woman slowly got up, stepped behind the partition, and emerged with a plastic bag full of her allotted food from the program earlier this week. None of the containers had been opened. I knew part of Annie’s job was to ensure the food was being given to the children in the program, and I glanced at Annie to try to judge her reaction. Annie simply nodded, face unreadable, and made some comments to the auntie sitting across from her. A quiet settled over the house. I looked to the doorway to see three young roosters bobbing their heads inside to take a look, and eventually marching into the house to survey the dirt floor for crumbs.

Annie touched my arm and nodded that it was time to go. I said goodbye to the two women, the toddler staring up at me solemnly. After we had made our way back across the sand onto the road, Annie told me that the mother had been sick and had spent two nights in the hospital, returning home yesterday.

“Why was she sick?” I asked.

“She had a fever and her heart was beating fast. I don’t know what is wrong. They sent her home with some medicine. I told the auntie she needs to take care of feeding the little one while the mother is still sick.”

We reached our third house, which was a longer walk off the main road. As we approached, we saw a grass mat on the sand outside the house. A baby was laying on the mat, half covered by a blanket. No one else was in sight. I had a brief, horrible confused thought that maybe the baby was dead, but when we walked closer I could tell that she was sleeping. Annie called a greeting into the house, but no one answered. She called out in the direction of another house a few feet away, and several children tumbled out. Annie spoke with them briefly, then gestured to me to sit down on a fallen tree nearby. “Their mother has also gone for water. We will wait for her to come back.”

The children surrounded their sister on the mat, then, moving in unison like a small swarm of bees, surrounded us on the log. There were laughing, jumping off the tree, inching closer and closer to where I sat and sneaking glances at me. I smiled at them and they grew bolder. A little girl in a stained quilted parka sat right next to me with her back towards me, looking over her shoulder at me and then laughing and looking away when I looked back at her. None of them looked older than 7. I wondered how long their mother would be away, and what would happen if the baby woke up crying. In the US these children would without question be considered too young to be left home alone even for brief periods of time, but in Zambia they were not only left alone, but left in charge of their baby sister.

After maybe 10 more minutes had passed, Annie stood up. “We should keep moving,” she said to me, and turned and spoke to the children, who all nodded and chattered in response, their high pitched voices drowning each other out. They were still jumping off the log as we walked away.

We started heading back towards the clinic, since our fourth and final house was near where we had started. Annie flagged down a crowded minibus, and we climbed in, squeezing onto the narrow seat next to several other passengers. The rows behind us looked so full I wondered how anyone could breathe back there. At my feet was a large basket of dried fish. Flies swarmed over the basket, a host of free-loading passengers.

Everyone was speaking loudly and directing comments at the driver, including Annie. Not for the first time, I thought how easy it is to assume everyone is angry when they are using raised voices in a language you don’t understand. But before we got off at our stop, Annie was laughing and the woman next to us was smiling.

At the last house, a young, heavy woman was holding her toddler while an elementary aged girl held her youngest child, a baby maybe 6 months old. When the woman smiled at me, her eyes were warm, bright, almost teasing. I wondered what it would take to keep your heart light in this dry place where your children didn’t have enough to eat. Annie proudly pointed to the toddler. “Soon he will finish our program. When he started several months ago, he was kwashiorkor.” She puffed up her cheeks. I remembered the pictures on the wall of the clinic of children with faces, limbs, and abdomen swollen due to water retention caused by lack of protein in their diets.

Annie turned to the mother to confirm what she had said. The woman smiled and nodded. Annie began quizzing her on the information discussed about malnutrition in the most recent feeding program class. The woman listed off a few of the recommended foods and then faltered, covering her mouth and blushing as she looked at me and laughed, like a college girl caught by her professor reading a novel during lecture. I wondered if we were the same age. After Annie had reviewed more of the information with the mother, she turned to me. “Is there anything you want to ask her?” she said.

I hesitated, thinking of my daily routine in our little brick townhouse in Pennsylvania, with water running from the tap, indoor toilets, and a stove to boil water for tea and bake apple crisp or lasagna or carmelized brussel sprouts whenever I wanted. I thought of my almost one year old son and this just-barely forming new baby and how they would probably never sit on a dirt floor surrounded by chickens. But then I thought of how I felt in the months before and after Henry was born, how all the resources in the world couldn’t make me feel ready to be responsible for the life of a new, helpless person. How I worried when Henry had that ugly cough last winter. How I wasn’t sure if I’d be able to take care of both Henry and the new baby the way I wanted. And I wondered if this mother felt some of those same things.

“How…far apart are these two,” I asked as she held both the baby and the toddler in her lap. Annie translated. They were 13 months apart. “Mine will be 18 months apart,” I said. The mother laughed and nodded. I asked her if she saw a change in her son since he had started the feeding program. She nodded emphatically, saying that he hadn’t been able to walk just a few months ago, but that now he was growing strong. We exchanged a few more comments, our words passing through Annie, a portal between two alien worlds.

We said our goodbyes and walked the short distance that remained back to the clinic. At the bottom of the hill that led up to the clinic, I thanked Annie for letting me tag along, and she smiled and nodded before walking towards the small building. She would visit more mothers and more children later in the afternoon. I watched her before turning down the path that led to the house where I was staying with other expatriate workers. Over the past few hours, I felt as if I had stepped behind a partition like the ones in the reed houses on the home visits, and that now I was stepping back again. I wondered if someday that partition would ever fall down.