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Déjà Vu Day Arrives

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The alarm rang at 4:15, shocking me awake from the four restless hours of sleep I’d managed to get prior to waking Gracen. Time to dress and leave for the hospital for her scheduled appointment to have her wisdom teeth removed.

The day went much as I’d anticipated.

It’s just a hospital I told myself when I first noticed the Mercy sign glowing in the predawn sky.

An inane conversation followed, “Maybe this time we will arrive early enough to get a handicap parking space.” (No such luck Monday when we arrived for her pre-op appointment.)

“Score! Right in front of the hospital entrance.” (Not many people out at 5:00 a.m.)

It’s not an emergency—nothing serious—just wisdom teeth—I told myself as I exited the car and unloaded the wheelchair from the trunk.

Deep breath in.

Exhale.

One foot in front of the other.

Whoosh! The pneumatic doors slide open. All’s quiet at the front desk: nary a volunteer in sight. Elevator ride. Registration. One more elevator ride to the third-floor surgery waiting room.

Thank God for social media and a smartphone! Facebook status updates and videos meet the currently limited duration of my attention span. Reading is simply not possible.

“Gracen Boxx”, the intake nurse calls and we are off. Double doors swing wide after a card key is scanned and we enter the surgical pre-op area which I silently note is eerily reminiscent of the ICU corridor at Freeman Hospital, just a slight bit narrower. I quietly suck in a deep breath as I follow the nurse who is pushing Gracen’s wheelchair to room 323.

Scrubs.

Tile floors.

Medical equipment.

A tech, Kim, enters the room, lowers the bed as far as it will go, and places a gown on the bed along with a plastic drawstring bag in which to store Gracen’s street clothes. The anticipated snick as the curtain is drawn follows as Kim exits the room and Gracen and I left alone in the small cordoned off space.

We gown her up, make a quick stop at the restroom next door then I maneuver the wheelchair into place, lock the wheels, move the foot pedals out of the way, lift Gracen to a standing position and perform an efficient quarter turn before seating Gracen on the edge of the hospital bed. It’s just a wee bit too tall requiring that I boost her up and back before elevating her legs and spinning her another quarter turn to lay prone.

I indulge in a deep breath before shifting the tray table and a chair down to make room for the wheelchair to sit in an out of the way corner.

Sit down!

In comes the pre-op nurse, Jennifer.

The blood pressure cuff velcroed in place.

Temperature taken.

Pulse and oxygenation recorded.

When did you eat and drink last?

When did you last take this medication and that medication individually until the list of her normal meds is thoroughly reviewed.

The dreaded IV is inserted and a steroid injected into the port in her left hand.

Breathe in.

Breathe out.

Doctor Baker enters the room in blue surgical scrubs. He greets us, asks if we have any questions and reassures us that all will go smoothly.

Next up the Anesthesiologist quickly followed by two operating room nurses. I hug and kiss my only surviving child and whisper, “It will be okay.”

hospitalbed2And then it happens. . . the moment I most dread . . . the wheel locks are released and Gracen is moving away from me. “I love you”, I call out to her retreating figure.

The first set of doors swing open, my eyes track the progress of her bed. A second set of doors swing wide . . .

and I pray.

It’s just a simple one line prayer that spontaneously whispers through my mind as the first set of doors begin to swing closed and she’s gone. . .

beyond the reach of my care.

I swallow hard.

Breathe in.

And begin pushing Gracen’s empty wheelchair back down the hall to the surgical waiting room. The fact that it’s empty is significantly sobering to me. It’s a stark reminder of what I fear most—a day when it [the wheelchair] becomes permanently empty.

I’m doing fine, I tell myself, and it’s true.

Then just before I enter the waiting room my mind flashes to another woman I know of whose husband years before was admitted for knee surgery, and something completely unexpected and terribly wrong happened and he never returned home to his wife and children. A painful, life-altering and devastatingly tragic loss of a godly husband, father, son, and beloved coach.

I swallow hard.

I know deep down in the places of my heart that I refuse to examine too closely, that this too could happen to me. Hasn’t it already happened three times before? An inconceivable cord death and the firstborn child we’d looked forward to with such anticipation never came home from the hospital. An unexpected motor vehicle accident and Bethany and Katie never even made it to the hospital. The incomprehensible diagnosis of an extremely rare and progressive disease. I know all too well that life is fragile. That it can be snatched from my feebly grasping hands oh, so quickly, so unexpectedly. I wish I could un-know it. How I wish I could return to my prior state of blissful ignorance!

Deep breath.

I find a seat, drop into it and retrieve my tablet.

I force myself to concentrate.

Ten minutes later David appears and I can breathe just a little easier. Just a little deeper.

I didn’t expect him.

Didn’t ask him to come.

But he read my blog post about this day and concluded that he was needed in spite of the seemingly innocuous nature of this surgery. The same procedure performed years ago by the same doctor in his office on my oldest daughter, Bethany. David was not present that day.

Life has changed in irrevocable ways.

I’m different.

My soul is bigger than it was before—filled with knowledge too wonderful for me—and my soul has shrunk in equal proportion by the invasion of personal experience with the fallen world—a world filled with sin and death. 

I’m very different.

Painfully different.

In no time at all, Dr. Baker stands before us. The surgery is over, it went well, no unanticipated surprises and Gracen is waking up.

Shortly thereafter we are called and escorted back to room 323 which we find empty.

We wait impatiently and then she appears, pale and groggy, but breathing. No neck brace, no breathing tube, no stitches in her face, no shards of glass shimmering in her hair. I stand and touch her cold forehead. Ask if she’s warm enough and request additional heated blankets for her feet and calves because her circulation is poor and they are often cold to the touch.

I take a seat.

Reply to a text or two.

Faint-WomanTen minutes or more pass waiting and watching Gracen’s sleepy eyelids open to half-mast then flutter closed again. And then, out of the blue, I begin to feel faint. I can feel perspiration begin to form on my upper lip and forehead. I feel like I’m going to hurl any second and I ask David if I’ve gone pale.

The tech coincidentally enters the room right after, takes one look at me and asks if I’m okay. She gets me a cold wet cloth with which I mop my face and the back of my neck. David begins to fan me then turns to Gracen as she mumbles a question around her gauze-filled mouth.

She wants to know if I’m okay.

The nurse enters the room. The tech sent her in. I tell Jennifer it’s just stress. I’m embarrassed to have such an out of proportion response to a simple and reportedly successful procedure. I feel the need to explain, but I remain mute. Does she really need to know what makes this simple surgery so stressful for me? Is my pride that important?

I begin to feel marginally better; try to find a comfortable way to sit with my head back or forward toward my knees. There’s no place to recline.

I’m shocked by my physical response. Shocked that I continue to feel faint and nauseous. Begin to wonder if it’s something I ate, but all I’ve had is coffee since four in the morning. David gets me some peanut butter filled crackers from the waiting room, which I slowly begin to eat hoping they will settle my stomach.

Every time I try to sit up I feel faint and increasingly nauseous once again.

Eventually, the nurse disconnects Gracen’s IV, heart rate monitor and blood pressure cuff. David heads out to get his laptop from his car then pull mine to the patient pickup area. (I’m not safe to drive. We will figure out how to retrieve his vehicle later.)

I’m not at all confident that I can get Gracen dressed and into her wheelchair without passing out, but I manage it weak knees and all.

I hate that I have become so weak before her very eyes. How much confidence can she have in my ability to care for her after this? I’ve managed multiple trips to clinics and hospitals and two trips to the ER one of which required a call to 911 and an ambulance ride without such a staggering reaction. Am I just getting worse instead of better two and a half years later?

I follow the volunteer pushing Gracen out to the pickup area hoping she won’t faint and tumble out of her wheelchair and that I won’t pass out in the hall.

And I breathe a sigh of relief as David pulls up just minutes after we exit the hospital. I load Gracen into the front seat and climb in the back leaving him to stow the wheelchair in the trunk.

As I lay my head back in the car, I notice I no longer feel nauseous, no longer feel faint and we haven’t even exited the parking lot. But I’m no longer in that place.

That building.

The facility David and I were transported to and treated with such care and kindness—Mercy Hospital in Rogers, Arkansas. The ER Doctor, nurses, and techs who treated us, cried for us, and prayed over me, for us, and for Gracen.

I am filled with gratitude, respect, and appreciation for the men and women who served us and serve this community day in and day out and yet it’s a reminder of dark and stress-filled days.

A reminder of what’s been lost.

A reminder of the high yet worthy price of love.

And I don’t need reminders.

Every waking breath I draw remains charged with the tension of love and loss and fear and faith. Every single breath is weighted with emotion sitting heavy on my heart.

A text message comes in just before we arrive home from the grief counselor, Ruth, both Gracen and I see. I tell her that Gracen did much better than I and am surprised by the response I receive to my recitation of my unexpected reaction a few hours later. “Yes, we [mental health care professionals] would anticipate a fairly significant trauma response as described in your piece last night.” (She received a pre-release copy of my blog post describing how I expected to feel at this time.)

Ruth’s response is as liberating as it is knowledgeable. Maybe it’s liberating because it’s knowledgeable. And as a result, my mind soaks in this truth . . . regardless of what others think; I’m not a freak, just a badly traumatized mother who manages to hold it together 99% of the time.

Now if I can just learn to extend myself a little grace, to reject feelings of embarrassment and humiliation the 1% of the time when my biochemical response is triggered by unavoidable sights, sounds, smells, words, and fears. Maybe that would represent more of a victory than trying to master my body’s biochemistry.

And Gracen—she is doing well.  When we first got home, I told her we needed that communication device we’ve been selecting and justifying to Medicaid right now.  I couldn’t understand a single word she was trying to speak.  But, the bleeding has stopped and she no longer has a mouth full of gauze.  She’s much more understandable although she sounds pretty croaky due to the tube the Anesthesiologist threaded through her nose and down her throat. We’re also managing pain well and she’s not terribly swollen, although we’ve been told that will get worse before it gets better. So Friday and Saturday may not be very pleasant. One day at a time is my mantra these days so we’ll just let tomorrow worry for itself to the best of our ability.

Many thanks to all who prayed for Gracen, David and me today.

“The insistent prayer of a righteous person is powerfully effective.” ~ James 5:16b (World English Bible)

 
6 Comments

Posted by on August 12, 2016 in Adversity, Faith, Muscular Dystrophy

 

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Déjà Vu

 

IMG_1304The alarm will sound around 4:15 a.m. so Gracen and I can get out the door by 4:55.

It’s just a hospital I’ll tell myself as we pull into the parking lot Thursday morning.

It’s not an emergency—just a planned procedure normally performed in an Oral Surgeon’s office—but better safe than sorry when your child’s health is already compromised.

Nothing serious—just wisdom teeth—I’ll tell myself as I exit the car and unload the wheelchair from the trunk.

Deep breath in.

Exhale.

Game face on.

One foot in front of the other.

One foot in front of the other.

5:15 a.m.

Carpeted floors. Upholstered chairs. Pre-procedure registration.

Bump as the wheelchair handles vibrate beneath my hands when the carpet ends and the sterile tile takes over. Another bump before the wheelchair glides smoothly over the floor as we pass oversized electronic powered doors.

Scrubs.

The smell of disinfectant.

The quiet buzz of nurses while keyboards click.

The blood pressure cuff.

Thermometer.

Pulse and oxygenation recorded.

When did you eat and drink last?

Take your medications?

The gown placed on the rolling bed and the snick as the curtain is drawn.

Gracen and I left alone in a small cordoned off space.

Breathe in.

Breathe out.

One step at a time.

Game face.

I’ll bend and lock the chair’s wheels in place so it won’t roll away from us then lift Gracen’s right foot off the foot pedal flipping the pedal up as I place her foot on the floor prior to up turning the pedal out and away from the wheelchair (tripping hazard). Then repeat the procedure with her left foot.

She’ll lean forward as I reach beneath her arms grasping her around the back and pulling her to her feet. Gracen’s arms will wrap around me clutching at my back as I help her disrobe before reseating her, readjusting the foot pedals and align the wheelchair perpendicular to the bed before moving the foot pedals out of the way again. I’ll place my right foot between her two feet before lifting her to her feet again and pivoting to perform a quarter turn to set her on the waiting bed. Hopefully, it will not be necessary to actually lift her up onto the bed. That’s just harder. She’s a tiny thing but it’s all dead weight. I’ll place my hand behind her neck and turn her head toward the pillow as I simultaneously lift her feet up swinging her body around and laying her onto the bed. Then I’ll figure out how to maneuver her body all the way up and onto the pillow at the top of the bed before unlocking the chair’s wheels once again, flipping the foot pedals back in place and then finding an out of the way place for it to sit in the small space.

I’ll hand Gracen her cell phone, pack her discarded clothes into the plastic bag provided before placing her clothing and my purse on the wheelchair’s seat. It might as well be made useful while it sits vigil with me in the surgery waiting room.

Gracen and I will wait as the nurse and Anesthesiologist prepare us for what comes next. Eventually, they will release the locks on the bed’s wheels and push Gracen away from me and behind the door leading to the operating theater. My eyes will follow her until the door closes and she can no longer be seen—no longer be reached.

Swallow hard.

Deep breath in.

Exhale.

Rise and push the wheelchair filled only with Gracen’s clothing before me into the waiting room. Find a place to park the chair out of the way of normal foot traffic. Drop into an upholstered seat.

Breathe in.

Breathe out.

Don’t think about what’s happening now.

Don’t think about what might happen.

Don’t pray. You’re not strong enough to shoulder any more deferred hope.

What benefit are my prayers if Gracen’s predetermined number of days have been reached?

Reach my trembling hand into my purse and withdraw my sanity protection device—a simple e-reader.

Distraction, distraction, distraction.

Praise God for fiction!

All I need is a sure fire way to engage my mind with anything beyond what might go wrong. To fill my mind with letters and words mashed together telling a story with a happy ending.

All I need is a distraction from the triggers inherent in my immediate environment reeling me back in time . . .

IMG_5553to the stretcher, I lay upon,

the rumble of the wheels bumping over the pavement,

the whoosh of the automatic doors sliding open,

voices talking above and around me,

the charge nurse’s greeting

and the echo of my desperate voice asking. . .  “Where is my daughter? Is she still alive?”

It’s only a hospital.

It’s not an emergency.

Gracen’s life is not at risk.

At least I think it’s not. . .

 
4 Comments

Posted by on August 11, 2016 in Adversity, Faith

 

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Move or Remodel?

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Why a glimpse behind the curtain to the deeply personal and hidden grief of a bereaved parent? Not to inspire your pity; of that, I can assure you.  Instead to inspire others to look beyond the surface of a grieving friend or family member. To consider how families are affected by a loss, emotionally, psychologically and spiritually, as well as the unique family dynamics that result; which might help you comfort, support and encourage them. The bereaved desperately want to be understood, to have their feelings validated, to break free of the isolation, to mourn unrushed, to have another share their sorrow (not attempt to fix it). This post was written months ago and is not reflective of my current state of mind.

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Move or Remodel?

Several months ago David and I wandered down the hall to the main bathroom in our home.  We stood inside and outside the doorway discussing if it was possible to widen the doorway (which sits on an angle) to enable Gracen’s wheelchair to fit through the door and other changes to make the bathroom accessible for her. It was a frustrating discussion because changes could be made that would work for now but maybe not down the road as Gracen needs a bigger wheelchair or moves into a power chair that has a wider base.  If we remodel to fit Gracen’s current wheelchair, the changes would make it harder to sell our home later.  What was the best choice for now?  For the unknown later?  How to decide?

At one point I sat down on the closed lid of the toilet, bowed my head and grasp the hair on either side of my head pulling it away and growled in frustration. David’s eyes rounded and fairly popped out of his head in alarm as he asked, “Are you OK?” To which I responded something along the lines of, “NO, I’M NOT OK!!   No, no, no, no, no, I am so very far from OK!  I’m completely overwhelmed and I’m so freaking tired of trying to find the positive in the negative, of getting up every day without Bethany and Katie, of watching Gracen’s body change, of living!”  A sob escaped and tears fell as David pulled me to my feet and wrapped me in his arms until the tears subsided.

I didn’t, I still don’t want to move away from my home.  Figuring out what we need in a new home is overwhelming; it’s costly, and how am I suppose to plan for the unknown future?  How do I leave this place where my children grew up without them?  How do I move into a new place without them around to make new memories?  This home bears witness to their existence.  To love and laughter and tears — to the last remnants of our intact family (as much as any place could in the absence of our stillborn son, Cole).

That young man stole my daughters and Gracen’s mobility and now here I am, sorting through Bethany and Katie’s things in fits and starts, parsing out their lives bit by bit. Give it away? Keep it?  Oh, God, throw it away?  Troy Robins, an unlicensed & reckless driver, took Bethany and Katie’s lives and now I’m systematically removing them from my home; from their home.  It feels so very wrong — as if I’m throwing my children away.

No, no, no, no, no, I am so not OK!



 

Helping the Bereaved Bear their Burdens

1.  Listen closely to what the bereaved say.  If they tell you they are struggling with something, try to think of practical ways to help. Pray for those specific concerns.  Keep your eyes open for needs they might not mention; yard work, snow removal, dishes that need to be washed, etc., then step in and take care of it.

validation-quote2.  Realize that you cannot fix their sorrow and they don’t want you to try. They want their pain acknowledged, not ignored, not rebuked, not corrected, and definitely not minimized. Validate their feelings and affirm their ability to carry on. Be aware that their faith may be strong but they are weak in so many ways.  They will likely feel as if their faith is not sufficient to see them through. Do NOT imply or state outright that God allowed their loss because their faith was strong enough to survive their loss!

3.  If they tell you they are having a hard time going through their loved one’s things, offer to come and help, or to simply sit with them as they do it.  Do NOT try to go through those things with a get ‘er done attitude.  Expect to listen to the bereaved reminisce.  Expect tears.  As uncomfortable as tears make us feel, they are a much-needed outlet for the grieving.  Venting their sorrow is healing, so don’t cut and run at the first sign of tears. Locate the tissues.  Offer hugs, if appropriate.  *Please note, an offer to help with a task such as this should generally be extended by a close personal friend or family member.

images (39)4a.  The grave site can be a place of comfort or distress.  Every bereaved individual is different (which I realize makes supporting the grief-stricken challenging and scary). Some spend a lot of time at the cemetery, others rarely go.  It’s generally a big deal when the headstone is finally placed.  The headstone often represents the only permanent legacy of the deceased. Offer to take the bereaved to the cemetery. Comment on the things you sincerely like about the marker they’ve chosen and the location selected. Never offer a negative opinion about either the burial site or the headstone!

images (40)4b.  Likewise when the deceased is cremated, the day the bereaved receive their loved one’s ashes is also a big deal. They’ve carefully chosen the urn—no negative comments! Some people display the urn, and others choose not to. Validate their choice as there will be people who are uncomfortable seeing an urn prominently displayed in a home and they will, unfortunately, let their feelings on the matter be known.  There will also be people who will not understand if the grief-stricken choose not to display the urn.  The bereaved often feel torn on such matters, and they need to do what feels best to them.  No good, but plenty of harm, can come from burdening the bereaved with other’s opinions and expectations.  If the bereaved choose to scatter their loved one’s ashes, honor their decision both in regards to how they wish to do it and who they wish to be present.

589232dd75cf172bd2447b660095985e5.  Extended family needs to honor with grace the way those in mourning choose to handle holidays, anniversaries and birthdays.  I’m well aware that extended family members also grieve and may be disappointed or even hurt when the bereaved choose to forego family gatherings.  But frankly; it’s not about you! The highest degree of consideration should be shown to those with the closest personal connection to the deceased. Piling guilt upon grief is insensitive and unkind. Expecting the bereaved to celebrate, to be surrounded by intact families, to shake off their sorrow for the sake of the rest of the family is unrealistic and frankly puts undo strain on the brokenhearted. Family togetherness may be beneficial to some, may lift their sorrow and make them feel supported, but not to others. Be considerate.  Love your bereaved family members enough to set aside your own desires in order to grant them the freedom to mourn without criticism and resentment for the choices they make.

**A word about bereaved parents of married children.  When a married son or daughter dies, a unique set of circumstances arise.  Depending upon the parent’s relationship with their in-law, things can go smoothly or be very difficult; especially when grandchildren are involved.  Please pray for these families.  Pray that the grieving parents and in-law can agree on funeral and burial arrangements, on seeing and spending time with the grandchildren, on holiday and anniversary plans.  Emotions run high, relationships can be destroyed, and heartbreak can be compounded.  Pray that both the parents and the in-law will be considerate of the other, that they will each be willing to compromise, and that the best interest of the grandchildren will be a priority on both sides.  As a friend of either the parent or the in-law, allow them to vent their frustrations and I can’t say this enough, validate their feelings!

IMG_93356.  Assume that everything the bereaved tells you about how they are feeling or challenges they are facing, is confidential. A solid friendship can be utterly destroyed if the bereaved feels they are being gossiped about.  Grief is hard.  It hurts.  Should someone inquire as to how the bereaved is doing, a safe response is, “She’s okay. She’s working through her grief.” Feel free to ask the bereaved how they would like you to respond to questions about their well-being and if there are prayer requests you can share. When in doubt, go with the safe response above.  An individual who is normally an open book may become uncharacteristically private when they feel most vulnerable.  Err on the side of discretion!

7.  Be aware that the death of a loved one often leads to further problems, such as our need to find a fully wheelchair accessible home.  Families are often left with staggering medical bills, traumatized children, loss of income, broken marriages and deep spiritual wounds. The bereaved are left emotionally overwrought, frightened and sadly, ashamed. Pay attention and look for practical ways to help.

 
3 Comments

Posted by on February 23, 2016 in Faith, Grief, Muscular Dystrophy

 

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