Blog 9—May 8

At the writing of this blog entry (days ago), Ian and I had spent 4 nights in a rehab hospital. Ian has been recovering 9 weeks and 5 days.

This night, the nurse needs to help Ian. He needs privacy. I need to be elsewhere, but it’s 2 a.m., so I lean against the wall, studying the abstract painting across the hall. We haven’t been at this facility long enough for me to know where to hide, to know what I might do if I leave his room so suddenly that I don’t have a book to read or my computer so I can write or grade.

I begin padding in my grey socks, fidgeting with the zipper of my sweat top, past this room, now this one. I hear television programs, a woman’s voice.

• “I can’t read it. I don’t have my glasses.”

Should I offer? I’m just waiting on Ian. I could go to her room and find them. But what if they’re at her home? I hear saying that she asked that man next to her to “look at those kitties” on the adopt-a-pet section of a local television news section but he wouldn’t look.

Somehow we sleep. I wake to get some ice at the nurses’ station before getting ready to give Ian’s gravity peg feed. Patients sit at small tables looking over newspapers while aides take their orders for coffee.

•  “Coffee. Black.” The woman wearing a plum-colored sweater over a plum-colored tee-shirt, sat in her wheel chair clicking her nails on the table.

Wish I drank coffee. Wish I had a diet Coke. The vending machine wasn’t working.

But it was only 6:00 (a.m.). Maybe the vending man will come today.

Because Ian can sleep through his feedings so long as he is elevated to at least 30 degrees, I turn on the local news. It bleeds into the headlines of “Good Morning America.”

• “James Comey was a disgraced leaker.” –Sarah Huckabee; “Oh my God. My presidency is over.” –Donald Trump

Still? That’s still the news? The wall, the Mueller report, collusion. Ugh. Two months, still the same stuff. Maybe I need to listen to the weather. Maybe it will rain soon.

The therapist comes in at 9:00. I leave so he and Ian can make their way to the gym, sit at one of the small tables to grade papers but am flooded with nurses’ voices.

•  “We need to get that medication. I don’t know if we have it on site.”

Who is she talking about? It’s not Ian. He has been here several days. He doesn’t need anything new. But maybe it’s not new. Maybe it’s something he is taking. Maybe, . . . Maybe I just need to stop trying to be nurse Mom.

My phone–

• “Ask if they are going to push him as hard through the weekend  . . . . Also remind PT and OT he has a shunt and shouldn’t have his waist twisted too much and his head should not be . . . .” (The text was a 3 part text.)

(I jumped up and strode to find the physical therapist.) Oh, my word, do they know this? (I began my observation, “My husband was concerned that . . . .” To which the therapist began his reply with “Of course I know Ian has a shunt, and I . . . .) Oh my gosh. I should always remember to take a deep breath and not let someone else’s text prompt a panicked response on my part. (I thanked him for his information and patience and returned to sit in the dining area while Ian went to PT.)

Ian sleeps uneasily. The sounds make me want to wake him to offer him a puff on my rescue inhaler. He drags the next day. A nurse says she hears something rattling. He’ll have a chest x-ray. I can’t get ready to teach. Can’t manage my life while trying to let my daughter-in-law sit in the room alone by trying to sit in the main lobby. Can’t manage his life sleeping on a cot next to him, waking for every change in breathing as I would when he was an infant, waking to feed, unless I didn’t wake because now, I’m no longer mid-thirties, I’m early sixties. Now, I’m still a light sleeper, but the waking for aids getting vitals, Foley drains, blinking monitors, the disoriented man wailing, weeping down the hall sink me deeply into restless sleep. I miss Ian’s sounds. I wake as if staggering towards a shore I’ve waded too far from, through a changing tide, stumble into the bathroom to dress, whispering to myself.

• “Deb, you are such an idiot. You likely have let your son aspirate because you tried so hard not to call the nurses every 7 minutes to pull him up in the bed. You likely have caused him to have some sort of lung infection because of how you have been not doing his peg tube gravity feeding that the doctor wants you to learn well enough, right enough. You missed two meetings at school, didn’t finish the feedback on your grad student’s thesis chapter and had to reschedule her meeting, didn’t leave Ian’s room soon enough—even though your husband was already there to help Ian—to wash and DRY your jeans so wore a pair of linen pants backwards to teach. You haven’t . . . (here the litany begins: names of people whose names and requests I’ve forgotten, family and school tasks, like the major University committee meeting I’ve forgotten, I didn’t do, was too aggressive about, to0 closed-minded about, etc.). Ian doesn’t want you here anyway. He is SICK of your hovering, your voice, the sound of your feet padding on the floor, your yes/no questions . . . . (This, the strongest of all my inner critic voices, prompts all my nervous, hovering, fearful, controlling speech and actions while also blanking parts of my memory so it can continue to address me.)

I’ve brought myself to tears and duck my head against the nurse approaching me to see my phone screen light up. Who is texting now? What have I screwed up now?

This text is from K—:

“I will praise the LORD, who counsels me: even at night my heart instructs me.’ Psalm 16:7 Praying for peace, courage, comfort, and calm.”

The screen lights again. This time, lyrics from a praise song from J—:

            “I raise a hallelujah

In the presence of my enemies.

I raise a hallelujah.

Heaven comes to fight for me!

I press four numbers and a symbol, open the door of the tiny kitchen-like room in which patient foods are stored, grab Styrofoam cups, straws, and spoons that I’ll need to mix the meds an nutrients for Ian’s gravity peg feed.

I enter his dark room, looking at his sleeping form silhouetted by the light of the open bathroom door, carefully place the items on the tray table and sit in the dark, waiting for the nurse, praying my texts.

The hardest thing is

When I think of

Understanding the rhythms of hospitals

Why did I commit to writing 2-3 blogs a week on my FB page when “advertising” this stupid blog? Was that a sneeze? Oh my word, he sneezed.

Ian’s room is dark except for my backlit face grinning from hearing a sneeze. That almost gave me a heart attack. That’s fair. I ‘bout gave him one.

This was Ian’s first night in rehab. It was also his first overnight capping trial—his first time sleeping with his trach capped. Capping and eventually trach removal had become the center of our world, as financial help for rehab and even being placed in a neuro rehab depended on breathing without the trach.

The past nine weeks had been spent in Hendrick’s ICU, an LTAC (technically not part of Hendrick, but located in Hendrick), the ICU, and the neuro floor. Early evening of Monday, the start of week ten, he was moved to the Encompass rehab across town. Ashley followed him there while the rest of the family transported the sacks and sacks that we had accrued over two months. I would stay the night.

Although in my mind, everything happening after 10:00 p.m. happens between 2:00 and 3:00 a.m., I really don’t know when I woke to the monitor for heart rate and oxygen level beeping—a sound I had been hearing off and on since 10:40 (the minute the nurse walked out the door). I had ducked into the bathroom to put on sweats; Ian was biting the monitor off. The beeping continued on:

• The finger monitor was loose.
• The finger monitor was off, lying under his elbow (I looked at him, “Iii-aa-nn,” modulating from a low pitch to a higher one with my mother voice from his childhood—I know you did this, and if you do it again . . . .)
• The wall unit had simply stopped tracking. (Can’t even entertain the reasons for this one.)
• The finger monitor was loose.

 

Finally, he went to sleep and we drifted into another beeping pattern—his low heart rate. He slipped from 70 to 68—it beeped, then accepted. To 66—beeped, then accepted. (Maybe it actually beeped at 67, but the monitor in the rehab room faced the door, and by the time I came to from sleeping in 90-minute increments, wrestled covers to the floor, found my glasses that I’d tucked under the edge of my pillow but had somehow wiggled to the middle, and crossed the floor, 66 was what I saw.)

Ian’s heart rate monitor and I began that teasing dance again and again. The monitor read 54 when I finally cracked the bedroom door and turned on the bathroom light so I could double-check that he had been sleeping through the noise. Seeing his open eyes, I leaned over into his line of sight and asked the Mom Question: “Honey, you okay?”

His eyes became wide. Fearful. His eyebrows shot up. I leaned over further, “Honey, it’s just me, just Mom,” slipping my hood back. His expression relaxed. (Seeing my appearance in the bathroom mirror the next night in which my high, lumpy curly-hair pony tail was likely to have made my silhouette look like a cross between a medieval executioner and that crazy person in a horror movie who carries a cleaver.) He began closing his eyes.

Returning to my bed—a chair that could extend a few inches past my feet, I careened into sleep, restrained in dreams by beeping machines and plastic tubes.

I’m not sure when I finally decided to stay awake and write.  Maybe when someone had come in to measure the circumference of Ian’s thighs, a part of intake that had been overlooked. Maybe when he finally dipped to 49, initiating a different, longer beeping (or maybe I’d just dreamed that). Maybe it was actually the peg tube flush at 4:00. Not that any of those things mattered.

I stared at my blank screen, lacking words—words that I was ready to write, anyway.

Listen to him breathe. Dr. Hutchens had finally said what I had known she thought—what I think the ICU nurses had thought—that for the first three days, she hadn’t known whether Ian would live.

Listen to him breathe. To his heart rate setting off a machine. He has a heart rate. He gets extra protein in his feeding. His left leg—the leg about which movement was unsure—was bent.

Seeing a miracle

Writing

Writing is stupid. Why am I trying to do this anyway, except it’s cheaper than therapy and my mom and sister read it. I need to call my Mom today. I said that yesterday. What did I do yesterday?

Ian pierced my thoughts with cough.

Listen to him breathe.

And suddenly, a week has gone by.

Each day, I ask what day it is—not the date—the day of the week. I stand in an elevator wondering why it isn’t moving when I haven’t pushed a button.

I can’t even tell you how long it has been since the accident—61 days, which means 3 months, yet it happened the 11^th of February, and it’s now the 12^th of April, so I guess it’s 60 days or 2 months (or almost 10 weeks), whichever is less depressing (or less confusing).

Over this time period, I have

• Gotten a new debit card 4 times (three are likely hiding under the driver’s seat in my car while the 4^th actually was taken from my unlocked-in-the-hospital-parking-lot car),
• Cut the tips off every pair of gloves I own so I could think and work in Ian’s ICU room,
• Worn a coat every day to the ICU, regardless of the temperature outside,
• Walked barefoot in Ian’s LTAC and neuro rooms every day (ICU was just too cold, and who can wear shoes all day?),
• Slept with my hood up every night that I’ve stayed with Ian because my ears are cold,
• Eaten 3 boxes of meal bars,
• Increased my caffeine intake to 4 diet cokes per day,
• Written what feels like 452 ½ posts for Facebook and 37 uncompleted drafts for this blog, AND
• Wrestled with Ian to keep him at a 30-degree angle for 1 ½ hours four times every day I’m with him to ensure that he didn’t aspirate while having a tube feeding.

I know all the places to hide and cry in the hospital, the vending machines that won’t be sold out of Coke zero, water, and peanut butter crackers, and how to help the Aide use a draw sheet to pull Ian up in the bed.

I know where I’m likely to get a parking place at various times of day. I’ve learned about spicy ranch dressing on taco salad made by the man at the “fresh grill” station who my mom taught in kindergarten.

I can’t give good explanations for anything, but I know what the different beeps mean, even in my sleep and can locate, replace, and reset the sensor for heartbeat and oxygen before the nurses’ station catches it. I know how to suction Ian’s mouth, and I can set and disarm the bed alarm to leave his room.

I mostly wear clean clothes to teach my graduate students who gently frown when a question I’ve tried to frame has too many moving parts and not enough clarity. I haven’t killed the fern in my office yet, but my poinsettia at home has been dead for weeks.

In sum, it’s all about moving parts—finding them, juggling them, figuring out how to hold them or where to put them, and mostly having faith that if one element falls or fails, and even if everything falls or fails.

Oddly enough, while I’m encouraged every day by someone to “let go and let God,” I’m finding that accepting gifts rightly to be crucial for coping.

Christian ethicist Samuel Wells argues that Christians should do better to  “accept gifts rightly,” meaning that we should “regard the world not as a given but as truly a gift from God.”  The “world” for Wells includes whatever we take for granted. That sounds logical and even lovely, but it stinks.

First, a caveat: it doesn’t mean accepting all things that all people think Ian and I need. I

What it does mean, though, at least for me,

• is not rejecting offers of help just because they come from those who I fear wouldn’t do things the way I would or from those who don’t necessarily have the body of knowledge I think I have.
• Is allowing another to help without judging their offering against my expectations and past experiences.
• is not worrying while the offering is being made, then responding with an uncritical “thank you,” and avoiding re-doing or criticizing when the offering has been given.

All of this is hard for me to do for different reasons.

Sometimes it’s because with fatigue, I can’t always articulate what I need or judge the validity and degree of arrogance of my perception. Sometimes, it’s because I fear giving up a duty or a task simply because it makes me feel powerless and unneeded.

Yes, I need to be accepting and gracious. And, after prayerfully living in the space of “accepting gifts rightly,” I still am able to say no.

Wells’ category is huge, yet it is also small in that it is focused exclusively on gratitude about the overlooked and taken for granted.

Today, I’m thankful for a particularly cross and difficult aide who made sure that I had a box of mouth care supplies for Ian. For having access to a clean up-to-date hospital facility for my son instead of a field med hospital in Afghanistan. For mown grass in my yard so that the couple who will bring food to my house won’t think they’d pulled up in front of a house no one lived in—a foolish, prideful thing to be grateful for, but one I’m glad for nonetheless. For a family friend who popped in to see Ian and stayed long enough so that I didn’t have to cancel or reschedule a work meeting.

So many things clamor to be on a list of missteps, including gifts I didn’t accept or didn’t accept “rightly.” As I fight the pull of sleep that creeps around me, I accept the screw-ups of tomorrow, offset by the gifts of the day.

I’ve never been a germaphobe. Even so, a possible bacterial spore infection, a sleep deprived old mom, and a diseased backpack almost, as Eliza Doolittle (My Fair Lady) would’ve said, “done me in.”

Ian had surgery to replace his bone flap (piece of skull taken out to reduce brain swelling after the accident) on a Friday, by Saturday, the possibility of his having C. Diff (clostridium difficile) was flagged on his computerized records. The nurse explained to me that the illness was serious for those who had been in the hospital for an extended period, for children, and for the elderly. By Sunday, we were waiting results.

In a text to family sent on Monday, Jillian my middle daughter, a nurse educator who is a month away from completing a master’s degree in nursing, explained that “C. diff is a diarrhea that people who have been hospitalized for long term are at risk for.” She echoed Ian’s nurse that it was dangerous in babies and that we needed to gown and glove, followed by washing hands with soap and water, as soap and bleach are the only means for killing the bacteria. But Ian’s nurse spoke in terms of contamination.

On Sunday, after telling me that we were awaiting results, the nurse cautioned, “For now, we should consider the room as contaminated. Gown up and glove up every time you go in.”

Saturday, she had donned a gown over her scrubs. Sunday morning, she gowned. I gowned. Sunday afternoon, though, she didn’t. The night nurse didn’t.  Monday, she didn’t. Nurses who came to help her with any of Ian’s needs didn’t.

Respiratory techs and housekeeping did. I did.

“So, you don’t really think he has C. diff?” I asked both the day and night shift nurses. While they never explained why they had stopped gowning up, they continued to explain why I should.

“Listen,” the day nurse assumed a stern tone. “We assume he does. Everything in this room is contaminated. Every surface. Why once, I worked with this crabby doctor and leaned against the wall. ‘Your ass is covered in C. diff. Stand up when you work with me.’” She had lowered her voice to mimic his. We swapped a couple of “men doctors can be such jerks” stories, but she continued. “You’ll need to watch your stuff—your book—” She pointed to the text I was planning to teach in two days that peeked from the top of my backpack. “Your computer and phone, your backpack—you’ll need to wipe things down with bleach wipes.”

Sometime after that conversation, I noticed a plastic container of the wipes by the door.

Every time I left the room—someone calls, a case worker stops by looking for Ashley, I finally have to eat or drink, someone else calls—I grabbed the gown at the shoulders and rip. It would catch in my hair, and I’d have to rip a little more. Then I peeled off, gloves last, and stuffed the blue wad into a trashcan. I washed and dried hands and left the room. I’d return to do everything in reverse.

I sat in the corner of Ian’s room, the plastic gown covering my tee shirt, sweat jacket, and coat; the large purple-blue latex gloves over my black cotton fingerless gloves. His room was so cold that I finally teased the edges of my black neck scarf above the plastic, even with the threat of contamination and unclipped my long crazy-frizzy hair was clipped to warm my ears. (Yes, if you’re wondering, I clipped my hair to minimize contamination. Once again, I tried again to focus on processing the text I’d try to teach my graduate class.

I stared at the print with visions of deathly-ill grandchildren, a grad student or two in the ICU, sick from having picked up the textbook I was holding that I’d likely drop from being sleep deprived but not have wiped down well enough. That night, my dreams were wound in plastic tubing, smelly, yellow bodily secretions, and beeping boxes.

Though the nurse’s concerns were of all things sanitary, mine were simply of sanity. I began counting gown ups and symptoms. Each day, we continued to wait for results. Each day, I was less careful.

During this time, I learned that I could text with gloved fingers and that my phone would survive a bleach wipe.  Sunday evening, when I couldn’t tell if Ian needed to be covered with a sheet because of the gloves, I tore off a fingertip of the glove to touch his skin. Stuffing the tip into the wrist of the glove as if the nurse would make me wiggle my gloved hands so she could check for subterfuge, I returned to sit and stare at page 120 of my book.

That night, I left without wiping down my backpack.

That afternoon, after I had left to go home, Jillian texted the family that the C. diff test was negative.  Ian would leave ICU that night for the neuro floor which meant that I would wouldn’t have to gown up when I returned.

I had a sort of weird pleasure in having used almost two boxes of those blue plastic gowns and frankly, had a sense of relief in having taught my grad class, albeit badly, without causing the physical death of any of my grad students.

Note: This happened the week of March 25 in the LTAC.

“’Scuse my hand, Ian.” Long pause. “Ian, ‘scuse my hand.” Pause. “Ian, press my fingers.”  The petite night nurse was beginning her shift, checking Ian’s neurological responses. “Ian—” she began.

I interrupted, leaning into his line of vision. “Hey, Buddy, squeeeeze her fingers. This is your nurse. Squeeze her fingers.”

The nurse looked across Ian, addressing me. “Now, you understand that his brain has to switch to an entirely new thought process when you give what he will think is a different command.”

Ian was in a long-term acute care facility (LTAC). Too healthy for the ICU, unable to breathe without a ventilator to qualify for the neuro floor, he was moved to this part of the hospital, even though his brain injury and bone flap (missing skull piece) made him an unusual patient. I’d been staying nights with Ian to monitor his care while Ashley was balancing care for one-year-old James and returning to teaching.

The nurse was quiet, looking at me for a response. I studied her in return. She was younger than I, her accent crisp against my drawl. Her enunciation had features of British English, except for “squeeze.” I thought she might be from Pakistan but was too aggravated to ask.

Every part of my addled brain bounced “’scuse my hand” like so much hysterical laughter. I hoped I had as blank-eyed an expression as I struggled for. “Thank you for helping me understand,” I replied softly.

She nodded briskly and began again. “Scuse my hand–”

I fingered the edge of a pillow case to the pillow Ian’s hand was propped on, musing: she sounds like Lacey’s friends from Pakistan. Actually, I while I’d heard Pakistanis speak, I never heard any of Lacey’s friends. She met them in 1999-2000 when we lived in Oxford, England while attending an all-girls school in lieu of her freshman year of high school. That year, I learned about henna (Lacey was a quick study and was sought out for her skills), what her friends missed about Pakistan, that England was not the racially tolerant place I had thought, and that Lacey hated curry.

Recalling me from my reverie, the nurse announced, “Ian is unresponsive. I will try again.” She checked his feeding machine, ventilator, and his prickly mom, asking if I needed anything before leaving the room.

Need anything? I need you to let me help. I need you to let me deliver the command to my son who has been asked too many times to perform for too many people, friends and family included. I need you to listen to me. I need . . .

“No Thanks, though.” We smiled at each other, and I was left alone with the prattle of ESPN and the whir of the ventilator.

What if she’s right? What if Ian thinks “Oh my gosh, Mom. Just STOP!” when he hears my voice.

Startled by a flash of memory of Ian’s silent eye-rolling, an expression I had seen only days before his accident when I had made one of those “now-honey-you-know-that” comments, I pulled a chair up to his bed. Sat. Made eye contact.

What do you see when you see me? What version of Mom am I to you? Are you logging stories you’ll drown me with at some family dinner a year, or two, or so, from now? Will I want to run from the room crying, “I was doing the best I could to pray, to watch, to teach, to be a good mother-in-law, to—” I paused the unending list. Ian’s gaze had wandered. It returned to mine as if he knew my own thoughts had wandered.

I placed my hand on his, leaned further into his line of vision. “Sorry, Bud. I know I’m just Mom. I love you.”

He raised his eyebrows.

“Thanks, Bud.”

It’s 4:00 a.m.

The glow of my computer screen backlights my son’s sleeping frame, positioned in a way I’ve seen so many years. Except for the tube draping from his neck. And the leads to the monitor, suspended above his head. And orange tip of his “peg”—the feeding tube into his stomach.

Ian himself is backlit from the open blinds on a large window, inviting everyone who walks by to look into our darkness. The IV and feeding tube poles stand watch, ready for use, and I?

I finally decided to stop jerking up every few hours, breathless, coursing with Ian, you alright?—words I only whisper to the Lord. So, I stealthily folded the cot. Stacked pillows and blankets. Now, I sit in a chair watching Ian breathe.

In a few hours, he goes to what is technically a third surgery—his craniotomy the day of the wreck being the first, followed by the removal of the internal and external ventricle drains, and now, the replacement of the bone in his skull and the placement of an internal shunt.

The need for this final surgery sounds normal, logical, list-check-off-y. The surgery is relatively short. It has been done on many people. Ian doesn’t go into the surgery in danger of dying. Actually, this surgery marks his progress recovering, in that enough healing has occurred to warrant this next step.

I thought I was okay with this. I’m not. I can’t give you any decent, significant, logical reason why. Instead, I sit in the glow of my computer battling demons with key strokes.

On the day of the wreck, Ian was bringing James, his baby son, to me to care for, as James had a double ear infection. Ian was, is, punctual. He grew up with parents who hated to be late. He was military. He was, is, a morning person.

When local news changed at 7:00 to “Good Morning America,” I turned off the television and began watching, instead, for Ian and James. By 7:15, I stepped out on the side walk to grab James as soon as Ian pulled up. At 7:25, I was so cold that I stood inside the storm door watching, and became aware that I’d begun praying.

At some point between 7:25 and 7:50, I shocked myself, hearing my voice say aloud, “Lord, let him live. Let them live.”

Oh, good grief, Deb. What a macabre idiot you are. I scolded myself. Grabbing my phone, I texted phrases about meeting at Cooper High School to get the baby.

At 8:00, I called his wife Ashley at her school. At 8:10, she called me. Ian and James had been in a wreck.

Forty-six days later (last night), I attended a Thursday-night-instead-of (or in addition to)-Sunday  church service with my daughter Jillian and her family. Missing musical notes to sight read the contemporary song a band had begun singing, I simply read words on a screen. Surrender your deepest fears. I heard myself whispering “Don’t let him die, Lord,” as the sting of tears began.

Church continued. I was comforted enough to hide tears from grandgirls.

Yet, afterward, even the profound joy of holding an open container of catsup for three-year-old William to dip a chicken nugget into, of listening to twelve-year-old Christiane and nine-year-old Josilyn bicker and laugh as sisters do, and even the silly joy of whisper-cheering the Purdue men’s basketball team into the elite eight bracket of the March Madness tournament while Ian dozed couldn’t side-track my angst about the surgery.

Instead of praying myself, I posted a second call to prayer on the IANstrong Facebook site in addition to the first update. Kind people who had already offered icons of prayer hands or comments like “praying” did so again. Still, I felt like I was turning inside out all over again so tried, instead, to sleep. Except that I couldn’t.

So here I sit in the glow of my computer.

It’s 6:30 now.

Ian still sleeps. I’ve paced the floor by his bed, my prayers slogging around my ankles, still leaving me unable to catalogue, to marshal, to process my feelings, all over again. Tap tap tap tap . . . tap tap tap. I backspace a line over and over, not sure I believe what I’ve written. Ian’s right knee bends.

It’s almost 7:00, time for shift change.

Save him, Lord. Save him, Lord. Heal him, Lord. Save me, Lord.

Please.

“Mr. Williams? Mr. Williams? I need you to wake up. Ian, I need you to wake up!”

The female nurse’s strong voice filtered through the hood from my sweat jacket. Sometime during the night, I’d drawn it up over my freezing neck and ears as I pretended to be my son’s advocate at night, while twisting on a creaky cot.

That’s not his night nurse. Is it shift change already? I tell myself and sit up so fast that I hear my glasses tink on the floor. Crud. Can’t even see to find them.

“You helping me rouse him?” The nurse’s voice was directed, this time, at me. “The doctor said to let her know if he’s lethargic.”

Ian had had a “tap and wrap procedure” the previous afternoon, meaning that his neurosurgeon had aspirated fluid from the area of his head from which she had taken a bone piece—something she called a “flap.” Afterwards, his head had been tightly wrapped in a turban-like fashion, all to determine whether he had become hydrocephalic and needed a shunt to drain the fluid.

The urgency of the nurse’s voice twined with my realization that the night nurse was a man were scary enough that I jerked up, wrestling blankets back to the cot. Stumbling to Ian’s bed, I assured her,  “Yes. Yes, I am.”

Recognizing the blonde charge nurse from the night shift affirmed my fears. She was lovely in a blowsy way, like the heroine in a Wagner opera. Corralling my thoughts about Wagner and why the charge nurse was standing over my child, I leaned toward Ian. “Honey, it’s time to wake up.” His eyes opened slightly.

That slight opening could’ve marked so many school mornings as Ian had grown up. An easy child to wake, Ian usually only needed the creak of an opening door to prompt a response: “’kay. Gettin’ up.”

This morning, I called. Minimal response. What do I say? Will a school reference trigger a wakening? Opting for that frame, I continue addressing Ian a second time. “Hon, you’ve got to get ready for school.” His eyes opened, wider. Eyebrows rose slightly. But then eyes shut, and the nurse left to report lethargy to the neurologist.

I finally pieced together what had happened

• The neurologist asked for any report of lethargy in the night—something I hadn’t been told.
• Ian’s cradle cap had gotten bad since his hair wasn’t being washed in the LTAC (Long-term Acute Care) unit. He had scratched his head the previous night, aggressively over the flap area. I had alternated between a comb and a cradle cap brush for an hour and a half to help him be able to sleep. At 11:00, I asked his nurse for Tylenol to help “take the edge off” so he could sleep.
• The nurse cleared Benadryl through the charge nurse and either a hospitalist or the doctor on all for Ian’s overall health, and yes, Ian was lethargic at 6 that morning.
• But he and I had slept.

Struggling to negotiate for information, especially when I don’t even know what questions to ask brings an indescribable layer of fatigue. Even when I realize that someone is launching yet another way to explain something, though, it’s as if the words roll off me like those sticky toys my kids would throw at the wall. Words stick a minute, then begin to drop, then stick ten minutes, then slide more. Ultimately, I can hardly remember who I spoke with, much less what was said.

The other piece of this fatigue is a choking kind of hope. Was that really a nod? Did he squeeze the nurse’s hand like he squeezed mine this morning (or was that two days ago)? And on and on. The fragility of this hope keeps it from bearing, buoying, supporting, or any other useful survival-type verb you’d want to add.

So what happened next in the lethargy saga? Ian’s neuro surgeon exonerated nurses. But still I had politely, dramatically—with quiet free-flowing tears—verbally accosted them: “I never would’ve asked for him to have Benadryl had I knowledge of the doctor’s concern with lethardy. I would’ve sat by Ian’s bed, combing his hair all night!”

Yes, as you’re guessing, more stuff had led up to and played into this scenario than I can tease apart. So, frightened and sleep deprived, I made pronouncements. I was beyond being soothed, and after making pronouncements, left the hospital and sat in my car, crying until I had neither energy or tears. When I returned, I helped to work on Ian’s hair. The night nurse was reassigned (fortunately, he wouldn’t have to deal with “one of those family members!”). The doctor affirmed that Benadryl or no, Ian needed a shunt, and we passed our day together with reading, physical therapy, occupational therapy, speech therapy, prayers, pink mouth swabs, and lots and lots of combing.

As I sit writing, I can hardly remember anything specific about the day. I just know that my head hurts, my eyes burn, the night nurse has popped in again to see if I need anything, and Ian has just closed his eyes. Another day ends with my not really knowing what happened today except that I can watch him breathe, his hands are relaxed, and I can almost remember him sleeping on my couch during a football game, his wife absently-mindedly fluffing his hair as she reads.

I crawl once more onto the cot, my every move punctuated by a creak. Fortunately, tomorrow brings renewed mercies—a good thing, as Ian really needs me to be filled with, regarded with, and framed with lots and lots of mercy.

“Give him up to God.”

I cannot count the preachers, ministers, pastors—pick your term—who have used this phrase during Ian’s recovery. I cannot count, in part, because at least five times every day I’m not sure what day it is; in part, because the term also comes from family and friends—each of whom is gently re-orienting me. But I don’t want to be re-oriented. I don’t want to give Ian up.

The day of the accident, Ian’s general surgeon had mercy on a frantic mom, letting my husband, daughter-in-law, and me stand in a hallway of the emergency room and watch him being moved from his trauma room to surgery. I stood rooted to my dark tile, unable to see his face for the resuscitator bag being squeezed by a person walking next to him. I heard myself whisper praying, “Lord, I give him to you.”

Actually, the thing with giving Ian up—with giving everyone I care for up—is that I’ve been doing it over and over. In Ian’s case, I gave him up each morning for an academic year in Oxford, England, leaving him in a third-grade classroom when he was only a second grader (the school was too small to have a second-grade class). When I watched his every Pop Warner football practices and games with fears of concussions for my ten-year-old. When I watched my eighteen-year-old be driven to a Navy boot camp instead of moving into a college dorm.

And so many times in between and after.

The thing with giving up is that I still feel like it’s a one-time activity. I know, though, it’s an on-going ritual that I don’t pay much attention to when things are “normal.” Yes, I worried in the previous circumstances, but I didn’t pray for Ian to live.

With Ian’s recovery, maybe a day, maybe a week later—I’m honestly not sure—when my daughter-in-law was giving his paperwork to sign, I had to remember I’d given him to her. Every day, several times each day, I give him to someone new, whether to the care of a different nurse, a respiratory tech, the on-call doctor, the family member who sits with him when I finally have to go home (because intensive care units don’t let Moms pitch tents in a back hallway. Sigh).

Some days I can sincerely, calmly pray, “I give him up, Lord, to you and those to whom it falls to tend to my son. My child.”

Most days, I still reach for the pen to sign papers. I find myself on my feet as if to help the nurse. I offer to stay for another who loves Ian when they come to be with him. This list is long. I’ll spare us both. It usually doesn’t include prayer, or at least not enough.

As I write this, I struggle to end. I don’t have actions and words to prepare myself today for giving a blessing that was never mine to grip so tightly in the first place.

The act of giving, Mother Teresa said, “cleans the heart and helps you get closer to God. You get so much back in return.”

I guess today, I’ll just use what I have and trust God’s grace for heart-cleansing–

“I give him up, Lord. My child. I give him up.”

(“Interview with Mother Teresa.” Hello, Issue 324, 1 October 1994.)

Under “usual” circumstances, I’ll absent minded. I’ll put a book in the fridge and bar-be-que sauce on my dresser. I’ll lose my phone at least three times each evening while grading papers or creating lessons.

These days?

Actually, these days, I think I’m doing pretty well. While I lose my phone about every four minutes, I’ve only lost my debit card once (yes, as in had to get a new one), lost two text books (one of which my son-in-law found in Ian’s room today under a pink hospital basin), and I lost the keys to my office at school (they were in the truck). I found gum (unchewed, thankfully) under my pillow. Today, I found three pairs of socks in my backpack and realized that I no longer have any gloves with fingertips, as I keep losing them and cutting off the fingertips to type and write in Ian’s frigid hospital room (especially when he was in the ICU).

What I found?

I found a lovely greeting in Ian’s room when I returned from teaching today. I sat beside Ian’s bed, “Hey, Hon. It’s Mom.”

Ian looked at me and raised his right leg to tap me gently on the head with his foot as if to say, “Hey there, Mom.”

My blessings aren’t ever what I think they’ll be. They don’t come in ways I expect. They’re perfect and precious, just the same.

“Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning.” –James 1:17

This has been a week filled with blessings. James is finally pulling up again and standing flat-footed after having his casts removed. Ian has had his “C” collar removed from his neck (for a fractured vertebrae) and is breathing each day for hours on the CPAP. Today, he nodded assent to a nurse who asked a yes/no question, and he pleased his neurologist with his responses to her “commands.”

Of course, we’re delighted. However, we still must wait and keep ourselves and each other from constantly asking Ian for reactions, as he needs all his energy for physical therapy and for breathing with the CPAP.

Individuals who have traumatic brain injuries have one third of the brain energy that the rest of us have. That’s so very difficult to remember, especially when we get excited and want to see one of Ian’s responses that another family member saw or when we’d like to see if he what he’s comprehending and whether he can do something new.

So far, I’ve missed one tongue sticking out (on command of course!), two smiles, two thumbs up poses, time on the tilt board, and affirmative nods to questions, among other responses. While I’ve seen examples of purposeful movement, these “didn’t count,” as no one official—no nurse, technician, doctor, or even other family member–saw the movements to corroborate.

For me as Ian’s mother, waiting to see, wanting to see, to experience what I think others have experienced tempts me to feel fearful and even angry: what if the progress really wasn’t real because I didn’t see it?

As I thought today about my desperate wishing to have seen one of the “tiny miracles” today, someone’s mention of doubting reminded me of Thomas, forever branded as “doubting”—a story that has always resonated with me. Thomas’ wanting to have irrefutable evidence prompted him to question the Lord for a second validation, beyond that of his own sight. Though accommodating, as you know, Jesus’ response was a blessing for those who have faith without seeing (John 20:24-29).

My story of doubt seems foolish when compared to Thomas, yet our stories share an emphasis on self instead of God and others.

Yes, these past few days, the Williams and Beard families have praises and joys, but we also continue waiting, focusing and re-focusing on our goal of helping Ian. For myself, I end up helping Ian more when I simply continue to orient and re-orient away from self, towards my Creator:

“Trust in the LORD with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.” –Proverbs 3:5-6