After I’d been on the WELL for a few months, I visited the Archives Conference and left this message in the Topic called “Early Impressions of the Well”.
Topic 69: Early Impressions of the Well # 42: Jay Allison (jwa) Fri, Sep 15, '89 (09:16) 8 lines
My two-year-old daughter is caught up in a difficult health problem. I joined the Well to talk about Radio, but I found myself in the Parenting Conference late at night talking about Lillie. And little flashes of light came back-- other parents, other people-- responding. In my house bound state this felt like a lifeline. I am still struck by it. Moved. Changed.
Before this time, my computer screen had never been a place to go for solace. Far from it. But there it was. Those nights sitting up late with my daughter, I’d go to my computer, dial up the WELL, and ramble. I wrote about what was happening that night or that year. I didn’t know anyone I was “talking” to. I had never laid eyes on them. At 3:00am my “real” friends were asleep, so I turned to this foreign invisible community for support. The WELL was always awake. Any difficulty is harder to bear in isolation. There is nothing to measure against, lean against. In typing out my journal entries into the computer and over the phone lines, I found fellowship and comfort in this unlikely medium. The essay that follows is made from a collection of those postings on the WELL.
Woods Hole. Midnight. I am sitting in the dark of my daughter's room. Her monitor lights blink at me. The lights used to blink too brightly so I covered them with bits of bandage adhesive and now they flash faintly underneath, a persistent red and green, Lillie's heart and lungs.
Above the monitor is her portable suction unit. In the glow of the flashlight I'm writing by, it looks like the plastic guts of a science class human model, the tubes coiled around the power supply, the reservoir, the pump.
Tina is upstairs trying to get some sleep. I wonder if she can hear the rasp of this pen on the paper-- a baby monitor links our bedroom to Lillie's. It links our sleep to Lillie's too, and because our souls are linked to hers, we do not sleep well.
I am naked. My stomach is full of beer. The flashlight rests on it, and the beam rises and falls with my breath. My daughter breathes through a white plastic tube inserted into a hole in her throat. She's fourteen months old.
Lillie had croup– that haunting cough you never forget once it jerks you awake in the night. She’s our only child and we had never heard that sound before, the desperate barking intake, her tiny chest retracting with each gasp, sucking back toward her spine. We wrapped her up and went for help, and we didn’t come back home for a month.
Lillie’s croup was extraordinary, vicious, and almost killed her several times. After two days in our local hospital she was transported to Massachusetts General in Boston. They put a tube down her throat to her lungs and ventilated her– she was kept artificially paralyzed and sedated– but Lillie did not respond to the intubation. The croup would not loosen its hold on her airway and finally, after eight days, she had to be given a tracheostomy.
1:00 AM. I just suctioned sweet Lillie. I turned on the pump, dipped the catheter into her tracheostomy tube like a bee at a flower, and pulled the secretions out from her lungs. She's fiddling quietly now, lying on her back in the crib fingering her mother's undershirt that she sleeps with. I watch her by peeking over the bumpers and through the bars. Above her crib is a painting of a little Swedish girl sitting in a window watching the stars. My flashlight reflects off this page and illuminates the painting. Lillie watches the little girl in the dim light. I try to imagine what she is thinking.
At Mass General, in the Pediatric Intensive Care Unit, we joined a fellowship. The parents of sick children. You form bonds in the PICU, not that you ever say much to any of the other parents, but you bond nonetheless. The couple from Vermont with their one-lunged newborn, the parents of the burned boy, of the severely anemic infant, of the 12-year old with cancer. We ride the elevators together quietly, knowing that we know some of the same things. Once I felt a hand on my back.
We understand each other with our eyes. All our eyes are hollow and we are pale, because no one sleeps. There is no day or night in Intensive Care; the windows are blocked up, covered over. We curl up on blue chairs in the tiny parent’s lounge and lie still. An unwatched TV tilts down from the wall, shining. Newspapers are scattered on the floor and cigarette butts rest in coffee cups and half-finished cans of Coke.
We walk down the hallway, past the pay-phones and the elevators, past the nurse’s desk, and into the Unit to stand over our children in their nests of life support, and then back to the lounge. Just walking, back and forth, heads down, knowing we can do nothing, but doing it with a profound intensity. We do this day after day, week after week, wanting to be home.
In the hospital I do not think, “Why me?” or, “Why my daughter?” I think, “Why not? Why not my daughter?” I think about the virus, Lillie’s heedless virus, simply wandering into her to do its hot work. The other children here were found by viruses too, or flames, or holes in frozen lakes, or tumors, or open windows on second-stories. “Why children? Why anybody?”
Families come and go. Some of the parents go home alone. We watch them when their children die next to ours– ours unconscious, looking dead but not being so, precious life abiding. At moments during our ordeal, Lillie stopped getting air– she turned dusky, then blue– and at those moments when the doctors and nurses rushed around her, forcing us away from her side as they saved her, I glimpsed the terrain those other parents went into, but I know nothing of living in it.
4:35 AM. Lillie's having trouble sleeping tonight, like most nights. We've been dozing together off and on. She just coughed hard, a raspy wet cough, loud but voiceless, and the effort set off one of her alarms, a violent beeping like a smoke detector. I bent over to reset it and when I leaned back Lillie had her arm stretched through the crib bars toward me. Silently. I held her hand and we sat like that for a time. She started nursing again after the surgery; that's something Tina can do for her. I can sit with her.
In preparing to leave the hospital, the nurses train us in emergency procedures and trach maintenance skills. Tina and I fall to our tasks, never discussing the division of labor. I keep the pump cleaned and lubricated. Tina ties the trach ties. We both clean the stoma. We both suction. The other parents are learning their new skills at the same time. We are awkward at first, but soon we work around our children’s wounds like crafts people, offhand and expert.
Being home is different. We are alone, self-sufficient. You can tell the houses like ours, the houses where vigils are kept. Medical supply trucks pull up and leave the necessities. We don’t go out much. Our lights are on late.
4:45 AM. The flashlight makes its circle on the wall. The shadow of the pen twitches and crosses through the beam. The spiral binding of this notebook casts a shadow like a claw on my naked leg. Lillie frets. Her hands flap.
On the bureau is a Polaroid picture of Lillie lying unconscious in her hospital crib. We used to carry it with us when we were in Boston so we would have something to look at when we couldn't look at Lillie. Now it's lying on top of the bureau where it ended up; we don't know what to do with it.
“Please don’t put your Cheerios in there!” Breakfast. Lillie is trying to fill her lungs with Cheerios by carefully placing them one by one into her Swedish Nose, the little cylindrical vent that fits over her trach tube. It’s called a Swedish Nose because it was invented in Sweden and because it humidifies incoming air like her real nose that she’s not using. This cylinder makes Lillie look like a Saint Bernard. When we go for a walk, she sometimes takes it off and hands it to passers-by, or tosses it at them, depending upon her whim. And she likes to fill it with small things and put it back on; we didn’t get a Christmas tree this year for that reason. Pine needles. You have to watch carefully.
Lillie taught herself to vocalize with the trach. At the hospital they warned us she might not speak at all, but one evening as we were driving home from the grocery store, she squeaked and startled herself. In the front seat Tina and I cheered for her, and tried not to cry. Lillie began to practice. Now, in a rush, she gathers in her air and then expels it up past the tube in her trachea and out through her vocal chords. She is proud of her voice, which seems to come from both holes at once, a tiny human sound from her mouth and a mechanical one from the trach, together, in stereo, sweetly.
If all goes well, the tube will be removed in the Spring.
5:00 AM. I went upstairs to start the dishwasher, hoping it might help Lillie sleep. It's pulsating over our heads. Under us, the compressor we installed in the basement hisses wet air up through a hose to the mask over Lillie's tracheostomy. Now she coughs again. She's getting a cold. I drop saline solution into her trach to thin the mucous. I suction her again and sit back down to write.
This week, we had to perform an emergency trach change in the kitchen. It followed the curve that emergencies take when you’ve been expecting them and they finally come: A frozen moment of realizing, like a vacuum, and then the air comes back in faster and faster. Loud.
Lillie was wearing a shortened trach tube as an experiment to see if it would allow her to vocalize more. We had tied the strings extra tight around her neck so she couldn’t pull it out. But she did. She was yanking off her Swedish Nose to play catch, but it stuck and the whole trach came sliding out with it, disconnecting her lungs from the air. She looked surprised and confused. Tina and I stayed calm; our hands went to her throat to coax the tube back in, but we couldn’t get the right angle on it because of the tight strings. It jammed into the tissue around the hole, finding a false pocket. Blood bubbled and pooled in the stoma. In this moment, with the tube gone, Lillie’s real voice returned. She made one long cry. Loud. Then silence, as her air left her and a ball-valve of granulation tissue blocked off her trachea, keeping her breath from coming back in.
Tina ran for scissors and a long trach– we had them taped up on the bedroom wall waiting for something like this to happen. I held on to Lillie. She had enough air left in her lungs for a wrenching cough. Blood sprayed out of her neck.
The kitchen is a cold winter blue. Lillie is clenched, terrified, still. Blood is drying already. New blood spreads onto her undershirt and makes a red necklace. I am stiff calm, muscles tight, supporting Lillie’s quiet weight. My own blood rushes, loud. Lillie is turning blue. She begins to relax, an awful relaxation. Time rushes at a crawl.
Tina is back. She moves fast, cuts the ties, and the short trach falls away. She pushes the new tube in with determination, gently forcing it past the granulation tissue, and gets it through. Air pours toward the vacuum, and Lillie is breathing again. Her color comes back. We tie the ties, looser now. Lillie is in her mother’s arms, holding on. It gets quiet. The speed comes off the moment and time returns and moves at its pace again, slowly toward Spring.
Almost dawn. Lillie sits up, crying. Squeaking. Small sounds. Her cold is bothering her. I pat her over and over, and untangle her from her hoses and tubes and wires, and lay her on her back again. "Peek-a-boo," she says with her lips. I crank up her yellow music-box duck and sit back down in the rocking chair.
The flashlight shines on my naked stomach. It's cold tonight. Quiet and clear. Stars. I am thinking: We will live in the woods, just under the crest of a ridge. By some boulders. The floor of the forest will be free of undergrowth, a matting of pine needles. There is a level spot there. And a perfectly-formed cup in the earth, soft and out of the wind. My fire is there. My back rests on the gentle slope of the cup. The embers warm my feet. It is quiet. A spark lofts up to join the stars.
It's getting light outside. A faint gray light. Lillie is asleep.
[NOTE: Since this was written, Lillie’s tracheostomy tube has been removed and she’s doing just fine.]