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4/13/00
From the window of my daughters' room in Step-Down
I see the night skyline of the city.
Harshly squared buildings loom into the darkness
Cold red lights blinking their eyes atop each roof.
One skyscrapers' brilliant white neon lie proclaims
"Equitable".
There is nothing equitable about any of this.
There is nothing equitable about handicapping a 25 yr old Mother and beloved daughter.
I keep thinking we will awaken from this hazy bad dream
Like a nap during a summer storm
And find ourselves free of this evil place.
I cannot will it to happen.
I checked out of the hotel when she came to step-down
And I now live in the room with her.
I wash her, feed her, change her diapers, change her linens
Struggle to keep her from crawling out of bed
And re-fracturing her many injuries.
Because her short-term memory is badly damaged
She has what is euphemistically called
Decreased Safety Awareness.
She has no idea what her injuries are,
And cannot remember that her arm is broken, her pelvis fractured in three places,
Her face fractured, Third Cranial nerve damage
Much less severe axonal injury with bleeding into the Anterior horn of her ventricle.
I fight with her to keep her in the bed.
She shrieks in pain as she struggles to clamber out , no idea why everything hurts so bad.
I put the light on for the nurses to bring her morphine
Which usually takes at least an hour to arrive.
A very long hour.
She cries and moans "Mommy, Mommy" over and over and over,
Each intonation more agony-rich than the last.
I think I am going mad.
I have spent my life ameliorating the pain of strangers.
My child is suffering
My child hurts
And I cannot fix it for her.
I get in the bed with her, hold her in my arms and rock her gently, slowly,
Carefully.
I stroke her face tenderly and murmur to her
As when she was small, praying it will comfort her.
I fight to keep my tears in check
But her cries are so piteous, so animal-like,
And my tears weigh so much these days.
An hour and fifteen minutes later, morphine arrives.
I fight not to snatch it from the worthless hag who carries it.
I struggle with the need burning in me
To ask her how she'd like to sit and watch her injured child suffer
As I have mine.
I watch her inject the IV
And I start to count.
The minutes drag by.
Kelli starts to relax her grip on my shoulders.
Her head falls onto my collar, pumpkin-heavy.
Thank God...its' working.
She's' not hurting for a while.
I can breathe again.
_____________________
4/16/00
I try to find things to buoy myself with.
I am weary of being so damned angry all the time.
I consider two of the floors' CNA's,
Middle-aged, soft round Black women.
They help me wash Kelli
As if she were their own;
They baby her, try to comb her snarled and matted hair, tenderly braid the pieces they get unsnarled...
...They rub lotion onto her feet and cluck their tongues over all her bruises and lumps and bumps, murmuring "Mmmmmmmm-Hmmmmm" , as they help me get her shiny and clean again.
I love them genuinely for their humanity, and they are part of an elite few that sustain me in
This Place.
I consider the Case Manager whose soft voice makes me want to lay my head on her shoulder, thinking it a good place to deposit my weariness...the Speech Pathologist who talks to Kelli so softly, patiently, her understanding of my daughter evident in the gentleness of her approach. I feel love for her, too.....the Social Worker with her honey-sweet African accent, speaking to me of how she knows Kelli will recover completely, her mahogany skin radiating a light shining from deep within...a light that gives credence to what she says...I love her, as well.
These women cannot know how they stand out, like hot-house flowers in a black-and-white landscape, brilliant and precious. They cannot know the jolt of hope they give me, or how they lift my despairing heart in this dark time. I attempt to assess what common factor binds them, what differentiates them from the rest of this purgatory...perhaps it is just that they have hearts.
______________________
4/18/00
The nights are the worst
Because she thrashes wildly every couple of hours.
Kelli is physically bigger than I, even after her trauma,
So I must lay over her, literally, to keep her in bed.
After many nights of wrestling, sore and exhausted,
Losing track of time and perspective
And bone-weary from sleep deprivation
I am wits' end to keep her safe from herself.
I ask for restraints.
I am terrified I will fall asleep and she will finally climb out of bed
And undo what has healed
Or worse yet, injure herself further.
She is non-weight-bearing, and has no concept of what that means.
She does not know where she is or why she is here,
Despite my telling her approximately 18 times an hour. ( I counted)
They bring me the posey vest and wrist restraints.
I regard them, lying there on the window sill, thinking perhaps I won't need them after all.
I consider how cruel it would be, and how safe it would keep her.
I consider I won't be able to take care of her if I don't start sleeping for longer than
An hour at a time.
She has confused nights and days, the gift that keeps on giving from ICU.
By 10:17 p.m., it is clear the restraints are needed.
I explain to her what they are, and that Mommy will put them on for her.
I tell her they are like seatbelts, only to keep her safe in bed.
She accepts what I say with a look of puzzlement.
Gingerly, I drape the posey around her.
My guts knot up.
I adjust it to fit snugly, and slide two fingers between the vest and her chest, to make sure it accommodates her excursion. It does.
I secure it behind the bed, and I see my tears drop onto the ties.
I can feel this thing welling up in my middle
And I am afraid to even speak
Because the sobs are right there.
I stand up, take a breath and let it out,
Forcing the hysterics down.
I walk to the front of the bed,
And I ready the wrist restraints.
Trusting me, she holds out her arm as I reach for her wrist.
She watches me slide the restraint on, check a fingers' breadth,
And tries to lean over to watch me secure it to the bed frame.
I see that my hands are shaking, and I will it to stop.
I am acutely aware of a numbing fatigue making my limbs and mind heavy.
My eyes feel like sand has been thrown into them.
My daughter gazes at me, curious, as I continue securing and tying.
She sits stupefied, trying to wriggle out of the restraints.
My heart is about to burst.
I reach across the bed and hug her to me
Telling her I need her to be safe,
That I need to protect her.
In her slurred, slowed speech, she asks me
"Safe from what, Mommy ??"
I cannot answer.
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4/19/00
Watching my daughter sleep, counting her respirations
I consider my arrogance....
...the fierce sense of pride I have always had in having borne
Six "normal" children.
I consider how I'd see handicapped children with their Mothers
And feel deep compassion, but a secret sense of immunity
From what they suffered and endured.
Now I know.
Now I know what it is to have a "not-normal" child.
I know what it is to hate strangers for staring.
I know how it feels to be on the receiving end of those well-meant
Sympathetic
Furtive glances.
I want to scream at them
"She wasn't born this way!"
As if it matters,
Now.
Bitter lessons in Life.
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4/20/00
I am taking Kelli home tomorrow
To a Rehab hospital back home specializing in brain-injured adults.
Tomorrow,
Kelli and I leave this place.
I consider her progress
And I am gratified
But wonder if I am being greedy by hoping for more.
I am burnt to a crisp from exhaustion and tension,
Having memory lapses myself from too much input, I think...
Trying to sleep in a recliner by her bed
Disgusted with the nursing staff
But humbly grateful for those who've helped.
Delta Airlines, whose compassion in assisting me to arrange Kellis' trip
Surprised and warmed me, all at the same time.
I fought often, every step of the way,
And it has left me scarred and bitter.
No one thought I could do it.
They wanted to let her go to a hospital here,
Felt it would be too complicated to get her home.
I did my daughters' discharge planning.
I called nurses at home, did the research, talked to the Rehab facilities
Found the one that matched her needs
Did the paperwork ( 6 hours' worth)
And got her admitted.
I arranged her admission and her ground transport via ambulance, and did it all from Kellis' bedside.
No one thought I could.
They underestimated what a Nurse would do for her child,
Really not so different from what we do every day for our patients
Making certain they get
What they need.
I consider the young Resident who refused to sign the airlines' form to clear Kelli to fly commercially because she might "disturb the other passengers". I had contained my rage up to that point, no small feat, given the parameters. Trembling, I stood very close to his young face and spoke to him in something that resembled a growl: " You are worried about covering your ass, and I am trying to take my daughter home, where she belongs. You can either sign this form, and live your life knowing you did the right thing, or you can continue putting your career before her well-being and chances for optimum recovery....and I don't care which you choose, 'cause I'll find another Doc to sign, believe me I will... she deserves this chance, and you will not deprive her of it. I see young pups like you come and go, all blown up with their self-importance...I teach you how to put in an arterial line when you're peeing your pants scared; I tell you what drugs to use and what diagnostics to get when your patient is crashing and burning, when you're terrified you'll get a poor eval from your Chief and can't employ critical thinking or find your ass with both hands. I make sure you get your lab tests and that all your bases are covered. I contribute to your becoming a good Doc because I believe the patients deserve that, that I have a responsibility to do my part toward that end. Your Senior resident isn't there holding your hand, walking you through your ICU rotation...nurses are , and you had this chance to even up the score...to do something to re-pay a nurse, a job that usually goes unacknowledged by most MD's". ...He looks at me, trying to muster indignation, shifting his weight from foot to foot, shuffling papers in his hands, and tells me he "just thinks" her agitation at times might upset the other passengers, and that it is his name he is signing, which makes him responsible for making the other passengers uncomfortable.
Hearing him say that does it for me, makes me snap like dried out kindling in a campfire. The frustration and hatred for this place that has built over the weeks is boiling inside me, twisting my very soul, and this spineless wonder is going to get a blast of the unedited version that I just cannot restrain even one second longer.
" My daughter is handicapped, through no fault of her own, and if some anonymous flier gets upset at the sight of my brain-injured daughter, then let them look the other damned way. How dare you suggest that if her infirmity might upset John Q. Average, she should not be allowed to fly home ??!! I'll be sitting next to her the whole time, holding her. and believe me, the glare anyone who stares at her will get will more than discourage them from staring again...and if anything, Kelli should remind them how fortunate they are to be whole, will remind them how fortunate they are that their loved ones are whole...so don't you DARE talk to me about "making people uncomfortable", because my family and I are "people" too, and we didn't ask for this, nor did Kelli, and we are all as "uncomfortable" as it is possible to get. Are you going to sign or not ?"
Young Doc Take-care-of-himself refuses to sign, and leaves the room with hot waves of my anger radiating after him.
I get another Doc to sign that day.
We are going home.
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4/21/00
The flight was an ordeal, not the welcome escape I had expected it would be.
At the hospital, the two NEMT's arrive with her stretcher, looking uncomfortable, ill-at-ease and much too young. I ask them, "So, have you guys had a lot of experience with this kind of transport?" (the "N" in NEMT stands for "non-emergent") They look at each other, and one gives me a hand signal which usually means "kind of", a sort of hand tilt/waggle kind of gesture. I evaluate them both, pausing for a moment. "You've never done this before, have you ?", I say to them, more a statement than a question. The heavier one, obviously the spokesman of the team, blushes scarlet, and sheepishly tells me "No M'am". I consider my options: there is not enough time to get another unit and crew; we would miss the flight. Besides, maybe I can teach them something they'll always use; something that will help the next family they transport.
I take a deep breath and pull up my best RN authoritative voice, and say " Well, we'll get through it. I'll show you how, okay?", and I smile, trying not to scare them both to death. They nod, and get about the task of transferring Kelli from bed to stretcher. I give them a down-and-dirty report on what has happened to Kelli, and what her injuries are. I try to pay attention to Kelli as I talk to them, not wanting her to feel left out.
At the airport, the two young NEMT's struggle to help me get Kelli through the huge facility. The escalators are a definite problem, and there is only one elevator, which we have already used to get to this level. I stood at the head of her chair, with one of the young men helping, and the other NEMT took the feet of the chair. I posied Kelli , in addition to her waist belt, to keep her from falling out or leaning too far forward , and we pulled her chair back at a 90 degree angle, with me reassuring her, telling her the ride would be fun. My heart was pounding, but we hung onto her, and we got her up the moving metal stairs. Somehow, we all managed to coordinate our lift and jump at the top so that we didn't throw her back down the scissor-like rotating stairs. We were on the concourse, headed toward our plane, me fighting the urge to run towards it. I couldn't believe this huge airport had not planned any better for WC access than that, and I realized that obstacle might've been one to keep other WC passengers (without a rabid Mother) from getting to their flight. The two kids ( that's' what they were) stayed with us for quite a while. I tipped them both twenty dollars each for working so hard at helping us. They both drew themselves up, and politely refused the money, until I told them to take it when someone wanted to thank them for doing something extraordinary, that in this line of work, thanks can be scarce. They were sweet boys, hard-workers, and we parted with hugs and wishes for the best. They offered to stay with Kelli & I till the flight came, but I sent them along.
It had to be just Kelli & me, now.
The flight was late, something I hadn't really allowed for in my "conditioning" of Kelli, getting her ready for the flight. She is still non-ambulatory, still non-wt bearing, and sitting up has been an incredible challenge. I think of all the hundreds of patients I have gotten OOB, to sit in a cardiac chair or WC, to hasten their recovery. I close my eyes for a second, tears filling them, thinking of Kellis' pitiful pleas to let her go back to bed, as I checked my watch every five minutes, determined to increase her endurance. She had to be able to sit upright for take-off and landing Delta had warned me, and for ten days prior to the flight, my son Adam and I struggled to keep her in that chair, sitting up as long as possible. She got angry with us, angry with me, viewed me as the origin of her discomfort, swore I was being mean to her. "I'm hurt, Mom" , she'd yell at me, her speech still heavily slurred and foreign-sounding. I would have preferred being slapped in the face, but knew in my heart we'd have to go through this, moment by moment. I had to do it, even if she ended up hating me for it. All I could hope is that she would forget it, as she has forgotten most everything in her life.
In the airport, I started to feel a sense of panic building in me. Kelli was complaining louder and louder about having to sit there. I watched the screen, trying to will the arrival numbers to change. I walk back and forth to the podium repeatedly, asking the agent how much longer the plane will be. He sees Kelli and makes an effort to be patient with me, but is clearly annoyed. Kelli is getting louder, insisting she cannot sit up much longer. The people sitting in the waiting area glance at her nervously, occasionally, and look away quickly when they realize I have "caught" them.
I am sick with worry, wondering if perhaps I was wrong to do this, to submit her to this discomfort. The morphine we gave her prior to leaving the hospital had to be dissipating by now, and I know it hurts her pelvic fxs to sit upright like this. A knot is churning in my stomach. We are rapidly approaching the point at which we will have to fish or cut bait. She can't take much more.
I suppose God did listen, and our plane slowly taxies up to the bay. The agent announces we would be boarding in about 20 minutes, and my resolve rushes back. I stroke her tenderly, try to comfort her, tell her we were on our way home. She nods her head in labored acquiescence, and I keep telling myself it will all be worth it.
It will all be worth it.
The agent nods to me, signaling it is time for us to board. Two large women in Delta vests come to assist me. The problem is, they have no clue how to lift Kelli. They have strength and bulk, but no technique. They do not know what non-weight bearing means. I ask God once again to help me through this. We transfer Kelli from the hospital wheelchair into a very narrow modified airline wheelchair, and we wheel her onto the plane. The agent informs me we have been given a First Class upgrade, and I can barely look at him to thank him. The tears are back, threatening to spill. I can't talk, and I can't afford to cry now. We get her by our seat, and now the test begins. The narrow aisle will not accommodate either of these substantial women, and it is clear to me I will have to lift her by myself. I get her under her arms, and she looks at me with such loving trust in her eyes. She trusts me not to drop her, not to hurt her. I tell God to do His part, here. The Delta women try to help, they try to assist me to lift her. My arms feel like they will rip out of their sockets, my thighs are screaming, knees burning. This is the last ordeal, I think to myself. I can do this. With my 5'3" frame as pumped as Motherhood can get it, I lift my 5'7" daughter in the cramped and confining space, and I tell the Delta women to hold her legs up off the floor. I do a partial pivot, and I land her in the seat. My back is wailing, feels like muscles have ripped out of their insertion points. But Kelli is in her seat, none the worse for the wear. One of the Delta women pats me on the back, and says " Good job, Mom !". I cannot look at her, because I am too filled with nearly out of control emotion, and I am much too fatigued to exert the energy necessary to keep it in check. I cannot explain to her that this seemingly small task of getting Kelli into her seat was huge business, and another consideration I had not factored in my planning. I took it for granted they would know how to help me, be able to help me. Its' okay, though, because we're on the plane. Finally, we are on the plane.
The passengers continue loading, and the door is shut. We taxi down the runway, and
and we poise for a moment. The plane engines rev, and we start shooting forward. I have a my daughters' hands in mine. The plane lifts off, and I am gulping hard, praying I don't lose it now.
I am blinded by tears for a minute, and certain they will spill if I don't get a grip. Kelli is chattering, some nonsense words, some intelligible, her slurred, thickened speech very dear to me now. I try to entertain her, keep her distracted. She begs to lay down. "Just a few more minutes, honey", I implore. I watch for the ascent to peak, for the plane to level out. Finally, the seatbelt light goes off, and I put her seat as far back as it will go. I consider how much more comfortable she is in First Class than she would have been in coach. The Flight Attendant comes to ask me if we need anything. It is obvious from the way she speaks to me that she has heard this story. Seeing that on her face makes it hard for me to speak. She squeezes my hand. " I have a daughter, too", she tells me. She asks if I would like a drink, and I realize it has been quite a while since I have indulged in any social amenities. " Yes", I reply....and I ask her if she has any champagne. I am taking my baby home, to get well, away from this Hell. It is cause to celebrate. The flight attendant returns with a small bottle wrapped in a cloth, in a tiny ice bucket. She has a glass for me. She nods to Kelli, and I shake my head "no". Kelli gets soda to drink, with Thicket in it I have packed in my purse for the trip. I ask her what the charge is for the champagne, and she tells me "Its' our pleasure...no charge", warmth radiating from her smile as she squeezes my hand again. I am battling the tears once more, and feeling a decreasing ability to keep them at bay. I need people to stop being so kind to me; I am ill-prepared for it, after what all of us have endured since The Wreck. Kelli chatters, asks me once again to tell her why everything hurts, why her hair is cut so short, and where we are going. I answer all her questions, working at keeping my answer sounding like it is the first time I have said these things, instead of the thousandth repetition it really is. She doesn't know that. She can't remember, minute to minute. I tell her 36 times during the flight what has happened to her and why we are on an airplane. ( I count , just to have something to do). A sense of tension is swimming in me. I thought I would feel an overwhelming flood of relief on this plane, and I am unsure why I don't.
The other passengers in First Class smile at Kelli and I. Not that ugly curiosity I have become so resentful of and familiar with, but genuine smiles. I can barely stand it. I give them fixed little grimaces that I endeavor to make resemble a smile, hoping they can grasp why smiling might be difficult for me right now....why I would be grateful for their kindness, but unable to respond fully to it.
Kelli is restless and her fractures, although largely healed, are hurting her. She has been up too long. I give her some Motrin I packed for the trip, praying it helps her a little. I tell her we will be home soon.. She nods her head, unsure why it is so important to me that we get home. I do some gentle passive ROM with her, hoping to alleviate some of the discomfort.
The 2 hours drag by, each minute weighted and suspense-filled. My daughter Summer, who has a baby and was unable to come to Atlanta to see her sister, will be at the airport, as will my son Tino, who has also not seen her. My son Adam is at home now, having left Atlanta a few days earlier, and he will be there. My boyfriend Jim and my friend Sandi will be there, too. Yasmin, Kellis' 4 and a half year old daughter, is not there. She is in Florida having visitation with her Dad. I considered arranging her being here, but there is no appreciable way to make her understand what has happened to her Mommy, so it is best left to another time...hopefully, when Kelli is better.
There will be quite a welcoming party awaiting my daughter, and I am concerned for how they will handle New Kelli.
My son Tino is very tender-hearted, and I fear for the impact this reality will have on him. My daughter Summer adores Kelli, and has not quite been able to grasp the things I have told her on the phone. I worry too about over stimulation for Kelli, something she definitely does not do well with. I worry for them all, but at least, Kelli and I are going to be home.
The pilot announces our approach to land, and the plane noses gently downward, toward home, toward family, toward safety and healing for my daughter. Those annoying powerful emotions are swirling again, like an agitator in a washing machine. I have the tiniest bit of a buzz from champagne on an empty stomach, and to offset it, I start planning how we'll get Kelli up...that I will have to do in reverse what it took to get her on the plane. The buzz dissipates with amazing rapidity.
We blur by the airport towers, and slowly, the blur becomes landmarks I am familiar with.
The hysteria is rising within me, and I am near the end of my capacity to contain it. The plane touches down, and I am deep-breathing, trying to get a grip. "Where are we, Mommy?", my daughter asks. "We are home, honey....we are home.", I answer.
They open the door, and the other passengers de-plane. I know they are out there, my family, Kellis' family, and I steel myself to see them. Jim, my boyfriend, comes aboard, and
together, we lift Kelli into the airline wheelchair, out onto the ramp, where the stretcher and paramedics await. I gratefully become a cruise director now instead of an active participant, as they lift my daughter from the chair onto the stretcher . I am becoming aware of a sharp pain in my lower back, but discount it. I just cannot pay attention to it now. There are lots of tears, lots of hugs. Kelli seems to know who people are, something I was unsure she could do, after having not been able to remember them since she woke up. I stay by her side, holding her hand. Jim is trying to hug me, and I escape his embrace, knowing it will certainly make me start sobbing out loud like a wounded hyena. The paramedics are guys I know from working in the ER, and I offer a silent prayer of thanks that it is them who've come to help me take my daughter to the Rehab hospital. I am fighting a terrible sense that something will go wrong, still, and we won't get there. It bewilders me, and I cannot will it away.
My family loads up in various vehicles, to follow us to Newport where the hospital is. I get in the ambulance with my daughter, who is exhausted and falling asleep. The paramedic, Bob, is adjusting the straps that hold her safe. The gentleness, the tenderness in his gesture is the last straw; the thing that makes me finally fall apart. I am so damned grateful to be home, so grateful she is here with me and safe, and that she will now have the chance to achieve as much recovery as it is possible for her to. These men, these paramedics, are my angels, because they are the final step in bringing my daughter home. The motion of the unit rocks her gently, as she is out like a light, worn out from all the excitement. Bob softly tells me " You're home now, Mom, so stop worrying". He is sitting next to me, and I bury my face in his collar and to my shock and amazement, I am sobbing and weeping, unable to keep the flood down even one second longer. The tears are hot and too heavy, and feel propelled from within, forced outward, like spray out of a can of starch. He holds me close, understanding all too well what has happened.
He just holds me like that, patting my shoulders, trying to comfort me. For about a half hour, I cry, feeling there can be no end to the tears. Kelli sleeps peacefully as we travel. I run out of the energy it takes to cry like that, and eventually taper off to snuffles and punctuated sobs.
We are home.
I had no reason to hope she would live, but she has, and now, we are home.
Continued (part 3)
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