Aquatic Development

The first time you were immersed in water, your infant wail mimicked a fire alarm, alerting everyone on the hospital floor of imminent danger. The nurse came back, with a warm, red-faced bundle, happy to hand you over, sweat beading at her upper lip. Your first bath at home went much the same way, my face not beaded with sweat, but drenched in tears. I could never quite get used to your deafening cry. It made me feel helpless as a new mother, inadequate even at the basic task of bathing.

A decade passed and now, you are in different waters. The unpredictable, dangerous, stormy, and tumultuous waters of adolescence leave me again feeling despondent. Some days you come home teary eyed and red faced, much like that little baby I held in my arms. I can no longer wrap you in a blanket or offer you consolation at my chest. Your cries are still deafening, only it is no longer the volume of your cry, it is the gravity of your tears that shake my soul.

Stranded on the shore, I want to throw you a life raft, some device to save you from the treacherous waters you are now treading. Like the fishermen’s widow waiting for her husband to return on the widow’s peak, I anxiously stare at the horizon, hope you will survive this perilous voyage. And just when I think the seas of adolescence have swallowed you whole, I see your delicate head–the same soft, curly brown hair I kissed for the first time—pop out of the sea. Sometimes screaming, sometimes gasping for air, sometimes peacefully bobbing along, but always, always riding the ebb and flow of growing up.

 

 

The Body Remembers

When I was pregnant I got a kick out of the fanciful way the pregnancy books likened the size of the baby to various foods: a peppercorn at five weeks, a papaya at twenty-two weeks, a watermelon at forty weeks  (although, I do take issue with likening the baby to a watermelon, at any point.)

I lost my first pregnancy at seventeen weeks, lost a little pear. It was a missed miscarriage, that’s the term the nurse used. No clues to the loss, only the discovery of a silent heartbeat, where once, there had been a steady one.

A DNC was performed to remove the fetus. I lost too much blood during the procedure, and had to stay in the hospital for three days to receive a number of transfusions. The hospital was in Hollywood, and the rooms had views.  In my memory it was always dusk or twilight, I can’t recall any sunshine, only three dim and endless days. I remember staring out the windows at the deep lavender mountains, while a long river of blood flowed out of the bag and into my arm. Out-of-work-actor blood, I had joked. A thin joke, as I wondered if my body would ever carry anything but grief. But, then, four months later I was pregnant again.

It was a pregnancy filled with worry, as I waited for my body to deceive me. Even at 41 weeks, with a full watermelon in there, I worried. The last days of being pregnant, two weeks late, I wrote in my journal; I feel overwhelmed with the force and the heat of this baby, it’s too intense to carry inside me. I fell like my skin will split open and light will spill out the seams.

In the end, after fifty hours of labor I had a C-section, so my skin did split to bear him. Jack was born weighing in at 9.7 lbs. The first thing I noticed when they placed him on my chest were his pale red eyebrows, furrowed, over eyes the color of sea-glass.  Through my haze of love I heard the doctor say to the interns in the room, “Now, I am going to put her organs back in.” It was alarming–I hadn’t realized they were out. I imagined them lounging haphazardly around the room– my spleen on a chair in the corner, curled like a cat, my lower intestine hanging off a surgical light, a misshaped garland. The medical community needs to develop a good code for that, “The chickens are out of the coop, time to round them up!” I’m not sure what the interns learned that day, but I learned to hate hospitals.

My third pregnancy I tried to deliver at home, but after twenty-five hours I transferred to the hospital, to a doctor who worked with my midwives. Together, after six more hours of labor, my amazing team delivered Heathcliff. He came through parted bones, after two hours of pushing, a VBAC, at 9.14 lbs. As soon as he was born, they had to take him to the side to clean his lungs. I was sobbing and shaking, I felt untethered, as if my bones had pulled too far apart and I was no longer connected to the earth but revolving with the planets. It was only when they placed him on my chest that I felt returned to solid ground.

“Does he have red hair?” The nurse asked. I smiled as I kissed the newness of his tawny head. He has hair like his brother, but his eyes are his own. They are the rich brown of earth–things can grow there.

My doctor was a tiny, soft-spoken man in his eighties. When he checked in on me after the birth, he pressed his strong fingers into mine, “Your son is the biggest baby I that I’ve ever delivered by VBAC, and I just posted it on Facebook.” Then he smiled, “You are a warrior,” he said, “like Joan of Arc.”

The details of my pregnancies and births have become hazier with time– memories less vividly painted.  All three experiences are like jewels buried inside my bones, I don’t think about them everyday, but when they are unearthed they dazzle me with their strength and intensity. And no mater how much they fade, the body will always remember.

 

Image by Paolo Roversi

Mothering In the Space Between Life and Death

When she comes into the kitchen, hands and face covered in the last of the nearly five dollar organic strawberries, I don’t get angry. I’ve always let her eat her fill.  Today her eyes look like a ghosts.  I do a double take to make sure she is really there.  I think, what if today is it? 

In my last month of her pregnancy, I remember flipping through the channels one night when a documentary on CNN caught my attention. It was about a little girl who suffered hundreds of seizures a day, while her tired mother helplessly watched over her.  How terrible a life, I thought. I couldn’t bear to watch it. I turned the channel.  Nearly a year later, my third daughter Paloma, would be diagnosed with the same disorder as the little girl in the documentary. Dravet Syndrome, a rare, catastrophic form of epilepsy, for which there is no cure.  I couldn’t speak the name.  I feared if I said it out loud, it would be true.   

In the past couple of years since her diagnosis, I’ve lost count of the number of children with Dravet Syndrome that have died.  Through the wonder of Facebook, I’ve gotten to know many of these families and have scrolled daily past prayers for seizures to stop, for new meds to work, devastating posts about how their kid didn’t wake up; they call it SUDEP, sudden unexpected death in epilepsy.   I’ve stopped scrolling.

I don’t sleep much at night.   Instead I toss and turn and think about what song we’d play at her funeral.  Maybe, Sufjan Steven’s, “Fourth of July,” “Did you get enough love my little dove” Too sad I wonder?  Would we even have a funeral?  Would we cremate her?  I think about watching her being shoved into the fire.  Her little body consumed by the flames until it was a heap of ashes and nothing more. Do they even let you watch? I can’t bear the thought, but this time I can’t turn the channel.

People ask me how I do it. How I wake up every day knowing it might be her last. Last year, on the way to the hospital for yet another seizure that wouldn’t stop, they made me sit in the front of the ambulance. I tried to look in the little window, but the paramedics distracted me with small talk.  I knew it was bad.  I thought, how will I tell everyone she didn’t make it this time? Instead of crying I felt removed from the situation, which I now think to be some sort of self-preservation. A mother can only take so much.  I began to feel an overwhelming sense of peace as I watched them wheel her quickly in the E.R. I thought, if she dies I will be ok. I don’t know how, but I will be ok. 

In the mornings I make our oatmeal and place the cannabis oil in her mouth. A ritual for us now, she opens her mouth like a little bird waiting for the worm to drop.  The cannabis helps, but it’s no cure.  It gives her a week or two between seizures.  Sometimes I catch myself praying over her body to stop shaking before I remember I don’t believe in God anymore. There isn’t a magic man in the sky or a miracle for us.  Just me watching as her lips turn blue and waiting for that long gasp of air when I know it’s finally over, sometimes fifteen, twenty minutes later. 

Every day that she is here is good day. Every day that she is here, I will let her eat her fill from my overpriced fruit and let her get away with far more than her two older sisters.  I take a million pictures and videos of her, just in case. I tell her constantly that I love her and always make sure to tuck her in at night, just in case. On really hard days when I just want to run away, I remind myself that my days with her are numbered.   I’m not a Buddhist, but I probably should be.  Mindfulness is something I’m daily in search of.  All I have is the present moment with her. I must live in it. This is how I do it.

Thoughts on Mother’s Day

some of my most difficult memories involve my mama, although many of my very best as well. the older I get, the more I know she did absolutely everything in her power to get the raising of us right. I think about how she craved a certain kind of simple life and was forced out into the world with two people to feed and clothe and teach manners to even though she was barely over thirty when she became a single mom. then there were those wicked fights that made the bones in your arms and legs hurt from exhaustion – all that love in the marrow trying to make itself felt under everyones tired weight of fear. despite the hard years, the good ones outweigh them 10 million to 1.

this is a poem I write about a few things I remember from our drive out of washington state to missouri the summer before I turned 11.

although she’s not in my life, she is a giant here, always. love you, mama.

The Motel Pool Matched the Color of the Sky, 2002 – 2017
Don’t forget Wyoming, Utah, Kansas, Shoshone, Thunder Basin, Pawnee, the KOA’s with grass trimmed so neat and don’t forget the showers you can buy for a quarter, dusty spider webs clinging to the window screen. Don’t forget who taught you how to cool your skin in the breeze or that your mama dripped love into flour and water and yeast and don’t forget the tomatoes she left peeling in the garden that split in the heat. Don’t forget you prayed once to Our Lady of Rolling Rock and Tequila and a smile so wide she’d get away with stealing. Don’t forget the blackberries near your neighbor’s house, a U.S Army Vet, and don’t forget he gave your mama roses when you moved in.

 

Published on Maya’s personal blog, Wild Geese

Facing Mother’s Day After the Death of a Child

I don’t feel much like celebrating Mother’s Day this year. My 15-year-old daughter died 51 days ago, after being plagued by a rare, relentless form of cancer for five years. I’m not sure what the celebration is supposed to look like when I failed at my main task as a mother: Seeing my child safely to adulthood.

I realize that attributing the death of my child to my own failure is irrational. I understand that guilt and blame won’t bring her back, that we tried valiantly to cure her with treatments that ranged from a liver transplant to chemotherapy to radiation. I know cancer kills children every day. But she wasn’t a statistic. She was my child, and I couldn’t save her.

I couldn’t save her.

I know other mothers who’ve lost children, and they’ve tried to prepare me for how unbearable this Hallmark holiday can be, how your very identity as a mother is shaken and upended when your child dies. We’re a dismal, heartbroken club of kindred spirits. We share the pain of empty, quiet rooms that hold the remnants of our children’s lives — keepsakes that remain long after our dear ones have gone.

How can I celebrate this day? How can I celebrate myself? Every day I open the door to my daughter’s room, sit on her tidy bed and wonder how any of this is real. How is it possible that all I have left is her collection of albums, stones and crystals, and her closet full of untouched clothes? How long will they serve as proof that she was here on this Earth, that she was real?

As the days go by, my daughter’s proximity to me fades, the reality of her absence becomes more concrete. This would be okay if it were because she had graduated high school, gone off to college and started her life, but that’s not what happened. She stopped existing at 15. She stopped.

I don’t know how to celebrate Mother’s Day without the consolation prize given all mothers — that our babies are gone, but we have laughing toddlers in exchange, that our toddlers are gone, but we have curious, bright-eyed preschoolers in their place, that the messy, carefree days of preschool meld into the primary years, when interests and personalities emerge and blossom, giving us teenagers who are whole, unique people. The fact that our kids grow up into actual people distracts us from the pain of their fading childhood. Except, of course, if they don’t grow up.

I am two mothers now — the mother you see walking beside my remaining daughter in the all-too-real world of chores and homework and trivial things and the mother you don’t see — the mother bereft, imagining that my daughter is two steps behind me, just out of sight.

There are too many mothers like me, rushing here and there, pretending we’re fully in one world when, really, we’re in two.

I look whole and normal, but deep inside there’s an emptiness where my heart used to be. I can’t walk with my surviving daughter without imagining the shadow of her sister right beside us, rolling her eyes, glancing at her phone.

I wish I could go back to when my kids were 9 and 6, when Mother’s Day was about hand-drawn cards and breakfast in bed. I can almost smell the burned toast, taste the mint tea. Dwelling on the past is the only thing that allows me to feel something other than numbness and despair. The others who walk this path of intense grief tell me it gets better. Eventually, I’ll start feeling what I’m supposed to feel. I’ll move more fully into the world of living children. Until then, I’m as much a part of my dead daughter’s world as I am my living daughter’s.

But what if I don’t want that to happen? What if time erases the only thing I have left of my daughter, dulling the edges of her face in my mind’s eye like a faded photograph? Living this quiet pain is how I feel closest to her right now.

Two years ago each of my girls bought me a tree for Mother’s Day — a magnolia and a dogwood. It’s the only Mother’s Day gift I remember clearly. The trees are small but thriving. Each year they grow a little bigger, acting as living reminders that I had two daughters, not one.

I guess Mother’s Day is just a day, not unlike the day that came before it or the day that follows. Realizing this somehow makes it okay that I can’t celebrate this year. The holidays we cherish are as real as we make them, just like our lives, just like the titles we give ourselves. My daughter isn’t here anymore, but that doesn’t make me any less her mother. Since she’s died, I’ve been afraid of losing that, losing the last little bit of her that I’ve been clinging to.

There will be more painful days to come — her birthday, Father’s Day, Christmas, a first day of school she won’t get to attend and on and on. I’ll need to reconcile her absence on these days so I can be present for my remaining child. Somehow, I must figure out how to forge a new connection with my daughter now that she’s no longer here.

The mothers that walk with me in grief tell me it’s hard to face all of these milestones in the first year, but it’s even harder in the second. That’s when the reality of my child’s absence will finally feel real. I believe them because I can sense it’s coming. I dread the full weight of time and distance that will inevitably make her absence a solid thing, final and irreversible. Even so, I hope I can find my joy on Mother’s Day again, if not this year, then next.

 

 

Dooley blogs about her daughter at healingana.com.