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Record my Misery

Record my Misery

Record my misery . . . List my tears on your scroll. Psalm 56:8

Today marks a year and a half since Bethany and Katie were killed by the reckless actions of an unlicensed driver (a three-time offender by the age 19).

I wonder if Troy Robins, and the parents who failed to teach him to respect and obey the law, feel any responsibility at all? If Troy Robins feels any remorse for the destruction he’s wrought in our lives? I certainly haven’t received even a cursory apology.

I wonder if he suffers flashbacks from that day? Are his dreams filled with the hysterical sound of my voice as I discovered my daughters? Is he haunted by the image of Bethany’s broken neck, of Katie’s slashed forehead of the sound of Gracen wheezing as she struggled for breath with a collapsed lung? Does the image of the yellow plastic sheeting quickly draped over Bethany’s body remind him, like it does me, of the oversized trash bags my mother-in-law buys from the Boy Scouts annually. Can he imagine the message that image communicates to a Mother?

Do the sounds of sirens and flashing lights make him want to curl up in a ball and cover his ears to block out the sounds and sights? Do they make his heart race?

Does he wake up every morning dreading the day ahead and stay up late every night trying to stave off the dawning of the next day?

Does he find menial tasks, cleaning house, making meals, paying bills overwhelming like I do?

Does he have to respond to polite inquiries as to how he is doing? Does he feel like a bug under a microscope with everyone personally judging his actions based upon their own preconceived ideas?

Does he feel smug because he escaped prosecution for two felonies and paid less than $1,000 in fines while we paid tens of thousands of dollars in medical bills?

Does he feel guilty for stealing Gracen’s last days of independent mobility or prideful for his own lack of personal injuries? Is he still driving illegally today putting other law abiding citizens at risk?

Did the events of December 26, 2013, change him in any way, shape or form? They changed me. They haunt me. They traumatized me. They changed David and Gracen in tangible and intangible ways.

The images flash through my mind – sights and sounds from the roadside. Police, firefighters, paramedics, a neck brace, a backboard, the inside of the ambulance as it pulls away separating me from my sole surviving daughter.

Blue sky, bumpy ride, greeting and condolences from the charge nurse. WHERE IS MY DAUGHTER? IS SHE STILL ALIVE? Nurses, CT scan, chaplain. WHERE IS MY DAUGHTER? IS SHE STILL ALIVE? WHERE IS DAVID? WHERE IS O’RANE? HOW DO I REACH HIS FAMILY? WHERE ARE BETHANY AND KATIE? Doctors, nurses, prayer, stitches. Oversized scrubs.

Hospital waiting room. Bethany’s best friend and family. Our pastor, his wife, church friends, my in-laws. OH, NO, GRACEN IS ALONE! OH, GOD, WILL SHE DIE ALONE? Relief, Gracen is not alone. Family has arrived in Joplin.

Informing in-laws, family, Bethany’s boyfriend overseas . . . and Gracen – twice.

Chauffeured to Joplin cloaked in darkness. Squeezing David’s hand and whispering, “They knew they were loved.” Talking to my Dad. Emailing my three closest friends.

Waiting, waiting, waiting. Gracen still in surgery. The hush of the ICU. Gracen covered in bruises, stitches, staples, a neck collar, attached to a ventilator, an external fixator protruding from her leg, IV pushing fluids, antibiotics, pain killers, blood pressure cuff puffing up, tightening, releasing, chest tube, broken pieces of glass glistening in her hair, her life still in the balance. Beeps and blips, whooshing sounds. Pale skin, cold hands, no movement. David in a wheelchair, dry heaving. Alone with Gracen.

Family and friends coming and going day after day, night after night.

Media reports, pictures on TV, in print, phone calls, text messages, Facebook posts. . .

Pastor, funeral home director, decisions, caskets, flowers, music, Bible verses, pictures.

Following the ambulance to UAMS New Years Eve and into the wee hours of New Years Day. A quick stop at home. Sorting through debris left by the roadside, shattered electronics, cherished stuffed animals hugged close to my chest, inhaling Katie’s individual scent, never used or worn Christmas gifts.

Leaving Gracen behind, family and friends standing in line, hugs and tears, funeral, cemetery, dinner, long, dark drive back to Gracen.

Doctors, nurses, low lights, bright lights, anger, fear, pain, hallucinations. Latex allergy, surgery, more surgery, x-rays, oxygen, chest tube out, chest tube in, lost weight, bedpans, stitches and staples removed, leg immobilizer, wrist splint. Traumatic Brain Injury?

Meals, motel rooms, sharing daylight hours, trading nights between hospital and motel.

Bright blue sky, ambulance tail lights. Home. Gutted doorways, exposed foundation, hospital bed, belly shots, sponge baths, care aides, home health nurses, OT/PT, pressure sores and debridement.

Gracen passed out, incoherent, 911, firefighter, paramedics, ambulance, ER again.

Attorney calls, no charges filed, accident report, reconstruction report. No charges filed. Prosecutor’s re-election campaign. Legal research, uncommunicative, ineffective prosecutor. No charges filed. Coroner’s Inquest. Misdemeanor charges filed.

Hospital bills, doctors bills, bills from the radiologist, the ambulance companies, the life flight service – oh my word, $35,000 for the helicopter. Bills, bills, bills. Late notices. Calls from creditors, collection threats. Collection letters, collection calls. What happened to our once stellar credit rating? I don’t even want to know – to try restore our good name.

Crosses on the roadside, markers on graves. Court room. There he is, the man-child who killed our daughters. He, and his mother, immediately turn away. Why am I not surprised? A shocking not guilty plea. We have to come back to court again. A defiant guilty plea. A slap on the wrist days after Christmas a full year after the collision.

Constantly churning thoughts, injustice, politics. Beliefs and faith challenged, relationships stretched, strained, damaged. Hard truths, platitudes, admonitions. Lack of forgiveness? Vengeance or justice demanded? Pity party? Choose joy. Praise God. It will be OK. God is in control. Was not God in control that day? Am I supposed to feel that what happened was OK? Is the measure of my faith dependent upon my ability to embrace my daughter’s deaths? Is worship and counting this trial joy for the spiritual maturity it will develop suppose to blunt or even erase the pain?

Tension, anxiety, restlessness, pharmaceuticals. Relief?

Round and round and round we go – fear and fatigue, shock and resignation. Sorrow. Lost hopes, lost dreams, unfulfilled expectations. No graduations, engagements or weddings for Bethany and Katie. Lost grandchildren. Lost identity. Lost purpose. Lost future.

How are you? Fine (Freakin’ Insane Needing Extraction). How are things? Good (Going On Only Downward). Oh, yes, I’m fine, things are good. We have new floors, new doorways, new paint – empty bedrooms. How could we be anything but grateful?

What has Troy Robins lost? We’ve paid the price for his sins. Did it cost him anything other than a few measly dollars pulled from his parents pockets?

On and on the questions race as the images flash. So very tired. So very disappointed. So very broken. So very lost. Head pounding, heart flayed open longing to be validated instead of feeling criticized and being placated. Simultaneously thankful for God’s provision, for eyes unveiled to see His care amidst the destruction. Does anyone realize sorrow and gratitude are not mutually exclusive?

When I long to flee His presence (because His will supersedes my dreams and plans), the Psalmist reminds me there is no place I can go where He is not – a highly frustrating consolation. When I feel forsaken, red letters remind me of the comforter who quietly resides within – forever present – never alone. When Satan taunts and condemns, I feebly try to strap on the full armor of God.

Faith built in the past is the foundation upon which I huddle in a fetal position as the storm continues to rage upon me. I may be beaten and battered, broken, lost and even despairing, but there is a firm foundation beneath. While I no longer believe I will not suffer more hurt and loss in this life, I remain fully confident of the only hope I am truly promised – my eternal future with the Savior who paid for my sins.

While some may accuse me of throwing a first class pity party, I choose to believe that in sharing Christ’s sufferings I am glorying in Him (see Romans 8:17).

Do we not rehearse Christ’s sufferings every spring? Do you think Christ’s spiritual and emotional sufferings paled in comparison to His physical sufferings? Do we downplay or elevate the fact that Christ endured betrayal and abandonment by His friends and disciples for the joy set before Him? That He took our sin and shame upon Himself for our eternal good? Does your heart not break as you picture Him crying out in desperation and despair from the cross, “My God, my God, why hast thou forsaken me?” Is not Good Friday about counting the cost? Is it wrong for this broken mother to do the same?

(Facebook Post 6/26/15)

 
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Posted by on October 22, 2015 in Faith, Grief

 

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Uncovering Unknown Issues of the Heart

(Facebook Post 7/26/15)
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I made a personal discovery today, or maybe God revealed it to me. It has left me feeling even more emotionally fragile than I was before. I discovered that I know a lot about God from an intellectual standpoint. I discovered that I know a lot of scripture, even if I can’t associate the Bible reference with most of them. But I also discovered that I don’t “feel” the most basic of Biblical truths; at least in regards to myself. What is this truth that has left me reeling? This truth I know in my head but not in my heart? This truth that staggered me to the very core of my being when I finally became aware of it? This is the truth that knock my feet out from under me: God loves you, Janet.

Now, I can’t count the number of times I’ve sat in sanctuaries and auditoriums and heard how “it’s not about emotional responses.” That we can’t always trust our feelings – which is why we rely on scripture. I certainly understand that argument on an intellectual level. I do. I get it and I’ve practiced it. When my heart’s been decimated, I’ve clung to the truth that my circumstances are not a reflection of God’s feelings toward me. I’ve held fast to the teaching that God is sovereign but that man has free will. I’ve believed that God doesn’t cause bad things to happen but that He does allow them to happen. I’ve trusted that He never leaves me, that He walks through the bad stuff with me, that He uses the bad stuff to refine my faith and conform me into the imagine of Christ and to somehow use that testimony to bring the lost to salvation; that I’m a tool in the Master’s hand used to bring Him glory.

But somewhere along the way my understanding has become warped. All the losses and the role disease has played in our family is all intertwined with my faith. I’m messed up. If the sole purpose of my life is to bring glory to God and enjoy him forever and if God allows me to be hurt over and over for the purpose of conforming me into Christ’s image and to bring Him glory, then we aren’t describing a God of love, we are describing a self-serving or an ego-maniacal God and that, of course, is in complete opposition to scripture.

So, I know I’ve gotten it wrong somewhere along the way. Maybe I simply accepted the easiest answer to explain God’s sovereignty because I needed an explanation, a purpose, when no real answer could be found. God rarely answers the why question, so I found one I could attribute to an overall grand design. But I can no longer cling to this idea that all this pain is for my good or that it’s justified for another’s salvation. I need to “feel” God’s love for me, not just know He loves me in my head. Otherwise, I’m left feeling as if I’m expendable for the benefit of others. That God loves others more than He loves me. That I’m little more than a means to an end and that the pain it all causes me is not of concern to God. If His purpose is simply to conform me or lead the lost to Christ, then I don’t feel individually cherished or worthy, or precious in His sight. I feel used – that I’m being conformed into a Christian Stepford Wife. I think that is why the idea that some ministry might rise from the ashes of Bethany and Katie’s deaths, from Gracen’s injuries and progressive disease, has been so repulsive to me.

The logical part of my being recognizes that God loves me but I can’t reconcile my theology and my reality. I can’t feel it in my heart – I need to experience His love for myself instead of simply reading about it in the Bible. And I don’t know how to go about it – I’m not even sure there is anything I can do about it. I need God to do it – to change my heart so that I can experience the depth, width and height of His love.

I can’t even describe how broken I am, how tired I feel. I’ve got no words to enable another to understand the prison that my brain has become. The ache, the hollowness left in my heart – the utter and complete devastation not just for what has already happened but for what is yet to come. I don’t know how many more blows I can take, because I’m not fending them off, I’m taking them on the chin.

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I am worried about sending Gracen off to college but I’ve come to realize it is something we both need. She needs to experience it and I want her to as well. I feel so selfish saying this, but I need a break. Not from Gracen – I need a break from the constant reminders of the accident. From the visceral response I have to seeing or hearing that wheelchair coming down the hall. From the things I now do for Gracen that she used to do for herself. It’s about the tasks and lost health resulting from her disease and the accident – not Gracen, herself. It’s about all the unpleasant changes that have happened to the child I love more than life itself endlessly assaulting my heart and mind.

It’s relentless. I just can’t escape it so that I can somehow work it out and live with it. Not just living without bitterness but actually continue to survive the emotional, spiritual and physical destruction. Oh to be able to escape, to flee from it all if not permanently then temporarily so that I can catch my breath and get my feet back under me. So that I can quiet the constantly striving voices in my minds. So I can find some peace. I’m so desperate for a little bit of peace!

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Posted by on October 22, 2015 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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Learning to Fly Solo Times Two

(Facebook Post 8/15/15)
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The start of college is an exciting time for Gracen, and a bittersweet time for me. A time for her to spread her wings and fly. I am profoundly thankful she has this opportunity at all as we were not quite sure it would be possible, at least in the way we hoped it would happen.

Earlier this year I read through the doctors notes from the ER December 26, 2013. When every effort had been made on her behalf, a final prognosis note was entered into record. It read something like this: Should the patient survive, she will likely reside in a long term care facility. When David and I were finally allowed to see her in the ICU, I asked the nurse outright if Gracen was expected to survive and received the standard non-response: All I can tell you is that the next forty-eight hours are critical.

It never crossed my mind to take pictures of Gracen in the hospital, in fact the only ones taken were taken by a friend of Gracen’s. But looking back, I wish I had, if only to remind myself of how far she’s come, how far she exceeded the expectations of the doctors who saved her life. There are days I need the encouragement – a visual reminder – that my warrior princess has conquered overwhelming odds in the past and can still push beyond the prognosis of her disease.

I’ve done everything I can possibly think to do to ensure a smooth transition for Gracen into college. We’ve toured the campus multiple times trying to address every accessibility issue she might encounter in the dorm, the classrooms, and on campus itself, from the cafeteria, library and laundry facilities to ADA (Americans with Disabilities Act) desks and priority seating arrangements. I’ve spoken with the Support Services Director and the Facilities Director, who, by the way, have treated this neurotic mother with great kindness and the utmost respect, and have addressed every concern promptly.

I have scoured the ads and stores to determine if there are products available for purchase that will make dorm life easier, more “normal” for her, and purchased what I can. Her dorm room has been measured and mapped out on graph paper so that we can determine how her room can be laid out for maneuverability and access to outlets to charge the battery for either her scooter or the power wheelchair we hope will be delivered before freshman orientation begins. We’ve assessed bathrooms and showers and storage space for her manual wheelchair, a walker, and shower chair. We located and spoken with the campus nurse and are working with Gracen’s therapy clinic to arrange a new, abbreviated schedule of therapy sessions.

Arkansas Rehabilitation Services helped us to identify and acquire assistive technology to help Gracen in the classroom and we have been practicing to use Dragon Dictate and a Smart Pen.

Most important of all, for this neurotic mother anyway, is the iwatch Gracen received as a graduation present. It’s a luxury item to most, a high-priced toy to others (and definitely a toy from Gracen’s perspective) but it’s sole purpose is to grant Gracen access to emergency assistance should she fall in the shower or anywhere else on campus when she is alone. As long as her cell phone is nearby, she will be able to call 911, campus security, the school nurse or a friend for help.

On Thursday, August 20th, we will move Gracen’s things into her dorm room and on Friday evening we will return and Walker Residence Hall on the campus of John Brown University will become Gracen’s new home. David and I will probably take a boatload of pictures, which she will allow with annoyed indulgence, hug her, and do our best not to shed any tears in her presence before turning our backs and driving away. We will be happy and sad and far more worried than the average parent as we exit campus. And while David may trust the Lord to protect Gracen by keeping her physically safe, I will trust Him to protect her heart, mind and soul until her numbered days expire, and I will hope and pray that her number of days will be far greater than Bethany’s and Katie’s proved to be because as Proverbs 19:21 says, “Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.”

My heart will hope that Gracen will fly and I will share the wisdom of others who have gone before and tell her to stay strong –

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that she is not a one in a million kind of girl, she is a once in a lifetime kind of woman.

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I will tell her life shrinks in proportion to one’s courage –

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And to keep on climbing, keep on reaching.  I’ll remind her that she’s come so far, that she need not be scared, because I am confident that she will fly! I’ll tell her to exercise discretion, use good judgment and then, and only then, take risks.

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And I will try to remind myself of those same things in the days and weeks to come as Gracen flies and I start looking for an identity beyond that of wife and mother and attempt to answer this question for myself, Who am I now?

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Welcome to Paranoia!

(Originally published on Facebook 11/17/14)

Please take a moment and read this blog post from themighty.com, entitled, “A Letter to the Me Who Was Terrified of Our Diagnosis”, before reading any further.

http://themighty.com/2014/11/a-letter-to-the-me-who-was-terrified-of-our-diagnosis/

Oh yeah! I wish I had read this in the early years, when I knew something was wrong but most people (medical professionals included) thought I was simply a paranoid, over-protective mother.

I never could have written this to myself. The many comments that minimized Gracen and Katie’s symptoms from real concerns to simple clumsiness left me second guessing myself. Having lost one child, I was hyper-sensitive to every fear, but also hyper-sensitive to over-reaction. I knew I needed to guard against my over-protective nature, yet that left me consumed with self-doubt. I was not able to see clearly. I needed someone with a more distant perspective than I could manage to encourage me to aggressively pursue answers. It took me quite awhile to find that person.

In the meantime, I developed an advance/retreat strategy. Push, push, push for answers. Gain a bit of knowledge, a fraction of ground. Push for more information. Get shot down and become disheartened. Retreat. Bury my head in the sand. Shake off concerns – ignore fears, ignore fears ignore fears! Arggggg, can’t ignore fears anymore – push, push, push! Repeat!

That describes the early years. Every once in a while God would send a glimpse of encouragement. I remember taking Gracen to soccer practice one afternoon, frustrated that a doctor had once again downplayed my concerns, leaving me questioning. Wondering if I was seeing something that didn’t exist. I sat down next to another mother I didn’t really know as practice began. A few minutes after practice started she turned to me and said, “What’s wrong with your daughter?” And while I cringe at the insensitive way in which the question was phrased, at that moment I was thankful because she validated what I knew to be true deep down inside and gave me the courage to push some more.

There came a point in time when, due to the progressive nature of the girls’ disease, I no longer had to fight to have doctors acknowledge a problem existed. However, at this point I encountered an unexpected attitude from medical professionals. There is a school of thought within the medical community that promotes the idea that the root of the problem is irrelevant. Treating the symptoms is sufficient. Weary of the battle, worried about the future and afraid to look too closely into the future, I acquiesced.
Then one day, having to find yet another neurologist, I stumbled upon Dr. Phillps, a new pediatric neurologist (actually, I think she was the only “pediatric” neurologist) arrived in NW Arkansas. She was a tiny sprite of a thing with a warrior’s heart. After several appointments she turned to me one day and said, “I think we need to search for a diagnosis. You need to know if a condition leads to other medical issues so that we can watch for those and not be surprised by them.” So the hunt was on – and it took years.

Dr. Phillips eventually married another neurologist, and so Dr. Phillps became Dr. Mrs. Balmakund when her husband began working at the same clinic.
Dr. Mrs. Balmakund is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others, medical or lay people. She loves her patients and their families and takes her knowledge and questions to monthly conference calls with a group of her peers and on the road to medical conferences where she questions other specialists, always seeking to find another patient presenting with similar symptoms or to find that one specialist who has knowledge of a condition she is unfamiliar with. She has no ego where kids are concerned. She willing sent us to other specialists and eventually one, who was unable to provide a diagnosis, did suggest two tests that might reveal a diagnosis. After jumping through a series of insurance hurdles, and fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.

Yippee, right? Wrong! David and I found ourselves less than prepared to hear the prognosis revealed one Spring morning at her clinic. However, Dr. Balmakund did not abandon us but set us up with a neuro-psychologist to help us work through the emotions and fears and guide us in the best ways to inform all three of our daughters.

Dr. B, as she is affectionately known to many of her patients, has been there for us every step of the way – has gone above and beyond with hospital visits and follow up phone calls. She has been our ordained gift from God and we could not be more grateful.

In fact, God has been doubly good to us as Amy Grant used to sing. Dr. Mrs. Balmakund works in a practice of like-minded professionals who have supported and encouraged us in our most difficult and darkest moments. They have shared hard truths with love and have pushed us to seek outside help we likely would have made do without. We have needed them and have often not had to ask because they’ve simply stepped up and in before we knew exactly what we needed.

Drs. Karkos, Scott and Balmakund have often played the role this woman played for herself in my life – recognizing needs within me that I was not always aware of myself. They have ministered to our entire family, not just their patient. In that, they are truly remarkable and have blessed us beyond measure! They are among those I think of when I hear or think of Philippians 1:3, “I thank my God upon every remembrance of you.”

These women are but a small sampling of the men and women God has surrounded and supported us with. So very many people, some who’ve played a very limited role, appearing at just the right moment and some who’ve stood in the gap for us for a season, and many who have walked along side us for years – serving as the hands and feet of Christ – with a word of encouragement, extending a simple kindness, or doing the heavy lifting by praying us through so many concerns and challenges and downright dilemmas. Oh yes, I am grateful to God for His faithful provision.

Now, I think I should go back and read paragraph one!

 

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Mitchell’s Journey – THE ROAD IS LONG

 
 

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Everyone Has a Different Normal

 

CTTheader

For TEAM Teen Gracen Boxx, “Everyone has a different normal”
Date: Saturday, April 25, 2015 at 6:03PM

ggirl When Gracen Boxx was 16 years old, her parents sat down with her for a serious talk. With a spirit of openness, she accepted the news her parents shared with seeming ease. They told her that she had been diagnosed with a degenerative genetic condition called Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS). Among other things, this meant that she would one day need a wheelchair and that her speech challenges would intensify. Learning of her diagnosis simply confirmed what Gracen already knew in her heart. Her physical challenges would not get any easier.

Gracen understands what it means to have a degenerative condition because she has courageously lived it throughout her entire childhood. Gracen’s mom, Janet Boxx, shares, “I imagine most kids with progressive diseases struggle to accept the way their bodies disappoint them and Gracen was and is no different.” In Gracen’s words, “Having a skill and then losing it is like losing a part of yourself.” The idea of losing independence because of diminished skills is a very distant horizon that most young people cannot fathom. For Gracen, this distant horizon has become an ever-present landscape in her daily life. Gracen’s vulnerability in this landscape became even clearer when Gracen and her family were in a tragic car accident in December 2013. Gracen sustained physical injuries, but far more devastating was the loss of her two sisters in the accident.

Even though Gracen knew that her ability to walk would diminish because of ARSACS, she never anticipated that a car accident would require her to use a wheelchair while still in high school. This reality intensified her commitment to working hard in therapy. Gracen’s immense compassion and understanding of the obstacles some children face make her visits to Children’s Therapy TEAM a highlight of her week. She feels a strong connection with children confronting significant daily challenges. For Gracen, “Everyone has a different normal.” Time has not dulled the ache of missing her sisters, but such feelings have become more normal. Her challenges with ARSACS have become normal. Even her experiences with the pain of frequent migraines have become normal. She carries on. Therapy has enabled Gracen “to maintain what I have for as long as possible.” With so much beyond her control, Gracen’s ability to choose to work hard provides hope, even when life’s challenges seem unsurmountable.

 
 

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A Mother’s Musings

(Written March 2014)
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Pictured left to right, back row Katie, David and Bethany, front row Janet & Gracen Boxx

Part 1 – And So, It Began . . .

December 26, 2013, my husband, David, and I, and our three daughters, Bethany (20), Gracen (18), and Katelyn (Katie) (16), and a college friend of Bethany’s, O’rane Williams (21), were returning to our home in Bentonville, Arkansas, having celebrated Christmas with extended family in the Kansas City area.  Just outside of Pineville, Missouri, on I-49, maybe 20 miles from home, a red pickup truck pulled in front of a silver pickup in the northbound lane in an attempt to make a left turn. That one action created a perfect storm of destruction for our family.  The driver of the red pickup was unlicensed, the turn he was attempting, extremely careless due to traffic conditions.  The driver of the silver truck was speeding.  The silver truck rear-ended the red pickup, which shot it across the highway into the southbound lanes of traffic, striking the front driver’s door of our family van.  The impact spun our vehicle 180 degrees, at which point it rolled over and landed on its wheels facing north on the southbound shoulder of the road.

Bethany and O’rane were both ejected from the vehicle.  Miraculously, O’rane, the only passenger not wearing a seatbelt, though injured, survived.  Bethany did not. Katie, who had been sitting in the third row seat on the driver’s side of the car suffered massive head trauma and died on impact.  Gracen, also in the third row seat, suffered multiple injuries, including a damaged spleen, bruised and collapsed lung, fractured left hip, fractured right wrist and knee and multiple contusions and lacerations.  She was airlifted to Freeman Hospital in Joplin.  David fractured his sternum and ribs, and broke a small bone in his back.  O’rane suffered a shoulder injury and a cut to his right knee.  He was also airlifted out but was sent to Springfield, Missouri, due to the high number of accident victims that had already been taken to Joplin earlier in the day.  I received multiple head contusions and a small cut to the pinky finger of my right hand.  David and I were transported by ambulance to Mercy Hospital in Rogers, Arkansas, where we were treated and released the same evening.

And thus a hurricane swept into the midst of an already severe thunderstorm in our lives.  You’d have to rewind the clock two years to find the beginning of the storm.  At that time, David and I received the diagnosis for a neuromuscular condition that our two youngest daughters had suffered with all their lives.  Prior to the diagnosis, we knew that Gracen and Katie’s condition was progressive.  It was evident in the way their bodies had changed over the years.  However, up until the diagnosis, we had no idea what the long-term prognosis was.  Receiving their diagnosis was devastating, to say the least.  We were faced with decisions regarding the best way to inform all three of our children and whom we should and should not share their diagnosis with, as well as dealing with the loss of hopes, dreams and the simple expectations all parents have for their children’s futures.  We worried over our fears for each of our daughters, how we would prepare our home to provide them with a safe environment and how to help Bethany, Gracen and Katie each deal with their own fears and frustrations.

One year later, David lost his job of ten years with Sam’s Club.  That resulted in a loss of health insurance, life insurance and an overall sense of security.  Shortly thereafter, Gracen fell when her knee dislocated due to weakened quads and hamstrings.  The fall resulted in a knee sprain that simply did not heal as expected.  Gracen’s summer months were spent receiving physical therapy and learning to walk with a cane for short distances, and practicing navigating in a motorized scooter that would enable her safe passage at the local high school.  Her disease seemed to be progressing faster than we expected.  We were devastated and desperately trying to project an encouraging outlook to her.

Honestly, unemployment was barely a blip on my radar.  Yes, I was concerned, but I believed that God would provide a job in His time.  I understood our lives could become very uncomfortable, but we would be okay.  I truly wasn’t worried, which surprised me.  I’ve been known to tell people that if I didn’t know better, I would say my spiritual gift is “worry.”  However, I can’t say the same for the situation with Gracen: I was terrified for her–for her physical safety, her self-esteem, how friends would treat her when she returned to school, and more.

I also discovered that I no longer expected good things from God’s hand this side of heaven.  Experience had taught me that everything is always harder than it looks or is purported to be.  I began to expect trouble.  Now, good Christians will likely cringe at that statement, but my Bible says, “These things I have spoken unto you, that in me ye might have peace.  In the world ye shall have tribulation: but be of good cheer; I have overcome the world” (John 16:33).  Keeping that in mind, it should come as no big surprise that in the months prior to our car accident, I shared with a close friend that I was waiting for the next shoe to drop. Bethany was experiencing some normal growing pains; Katie shared Gracen’s neuromuscular condition; and David, of course, was unemployed. So I told this friend it was my turn, and I was just waiting for my cancer diagnosis or some other disaster to be revealed, at which point I was sure I’d burst into hysterical laughter.  Cancer would just be par for the course.  Later, I told that same friend that, while hysterical, I was definitely not laughing that December afternoon.

Part 2 – Past Experience Impacts Present Circumstances

I am a woman of words.  Doesn’t that sound nicer than saying “I’m a talker”?  But truth be told, I am a talker.  I talk to people, to myself (in my head), to my family and to complete strangers.  Talking is the means by which I work out my issues – whatever they may be.  So, be warned.  What follows is not, by any stretch of the imagination, concise.

I discovered my love of words about fifteen years ago when I picked up my first Kay Arthur Inductive Bible study.  She makes a point in each booklet to instruct the reader to let the Word speak for itself, not to add anything to it or take anything away from it (which is, by the way, scriptural – see Deut. 4:2).  She admonishes the reader not to assume the Bible says one thing, but to pay attention to what it actually says.  And since the Bible was written in several languages, Hebrew, Aramaic and Greek, the words are of primary importance because they have different meanings (often fuller meanings) than a word might in the English language. From the day I began that study, words have held a greater significance for me.  I notice not only what is said, but also what isn’t.

So imagine how it must feel now to find myself at a loss for words.  It’s not just that I’m unable to express my thoughts and feelings to others; I actually can’t find words internally to process my own feelings of loss and grief.

I find myself searching Facebook and Pinterest to see if there is a post out there that in any way expresses that which eludes me.  And while I’ve found verses of Scripture that I believe with my whole heart, I’ve yet to discover anything that so much as touches the hem of the fabric of my heart, so to speak.

Maybe it’s just too painful to examine that closely, like a young person who has been horribly abused will block events from her mind in order to protect herself from the horrors to which she’s been exposed.  Unfortunately, I can remember with clarity the events, the sights and the sounds of the moments that changed our lives so profoundly.  I remember the words spoken and those that circled my mind that were simply too awful to utter.

Looking back to the death of our son, I realize that I was always able to talk about the events surrounding his birth and death without breaking down; but at some point, I became extremely selective with whom I shared the emotions those events inspired.  To this day, I can’t talk about the emotions without crying, and it’s been twenty-plus years since Cole was stillborn.  Obviously, my emotions are my greatest vulnerability, and I open that door only to close friends and to others who have experienced a similar loss.

However, following the car accident that took Bethany and Katie from us, and left Gracen broken and bruised, the emotions themselves are largely bottled up from my conscious mind.  There are moments when the tears fall and sobs burst forth; but even in those moments, I’m at a loss to put into words what I’m feeling.

What’s different this time around?  The deep, searing pain, and the hollowed-out feeling following Cole’s death, as painful as it was, somehow added value to the relationship.  This current emptiness somehow seems to devalue the importance of Bethany and Katie in my life.  Just that thought brings on tears.  My world has revolved around my daughters for years.  So where is the deep keening loss?   I’m numb.

I have chased these thoughts round and round in my head over the last two months.  I have wondered if I am normal. I have asked myself why I don’t appear to be stepping my way through the oft-reported “stages of grief.”  Initially, I simply thought I’d focused on Gracen and her physical needs.  I knew that I needed to be there for her––to walk her through her final days or into a new and complicated future.  I shifted my focus, to the best of my ability, from our losses to that which remained.  And yet, as Gracen improved and grew stronger, as fear was replaced with goals and objectives, I wondered why I was not falling apart and consumed with grief for my other two daughters?  I’ve wondered if I was sub- consciously pushing aside my grief in order to complete the daily tasks that are physically and emotionally draining all on their own.  But it didn’t “feel” that way.

So my mind has gone back in time to the days following Cole’s death, comparing my thoughts and feelings from then with now.  When Cole died, I was desperate to find the answer to two simple questions.  First and foremost, “Was Cole in Heaven?” and two, “Why?”  I searched the Scriptures because I could not simply trust the mere words of mortals who would say almost anything to comfort me.  I needed to see it in print, to know what God’s Word actually said.  It took a long time, and for some reason, I simply felt too vulnerable to ask my pastor for the reference,  but finally, I was able to place my faith in the words King David declared over his first child with Bathsheba in 2 Samuel 12:23: “But now he has died; why should I fast? Can I bring him back again? I will go to him, but he will not return to me.”  At this point, I gained a measure of peace; however, I continued to struggle with the question “Why?”  Only recently have I realized the desperate search for a purpose was little more than an attempt on my part to in some way justify myself before God – to be able to plead my case – to in some way prove that I carried no sin great enough to demand the price of my son’s life.

I’m not so different from Job.  You see, I’ve read and reread that book over the years.  I have a love/hate relationship with it.  Mostly hate, truth be told, primarily because until last spring, I was never, ever satisfied with the end of the story.  God never told Job why.  He didn’t coddle or comfort Job.  Instead, He put Job soundly in his place.  It never felt very compassionate or understanding to me.  And while God ended up restoring all to Job and provided him with a new family, I could never get over the loss of the first ten children.  I know firsthand that children are not replaceable.  A new baby doesn’t satisfy the longing for the one who is no longer there.

Last spring, I came away from my study of Job with an entirely new perspective.  Is it theologically correct?  I have no idea.  However, I have a new take on the book, on the man, and on God Himself.  This time, I found myself shocked to discover that Job was a whiner.  At least, that’s how he came across to his friends.

Job spends three quarters of the book seeking validation.  From a human perspective it appears to Job’s friends and relatives as little more than defensiveness.  The prevailing thought of the time was that an individual’s circumstances were directly reflective of his relationship with God.  Hence, prosperity was equivalent to a sin-free life, and destruction was a manifestation of hidden sin.

Job knew he was not harboring some illicit, secret sin.  He wanted a chance to argue his case before God.  He wanted to justify himself before the Almighty and receive validation from his friends.  Beside his grief and physical suffering, Job’s angst stemmed from an inability to justify his own lifestyle before men and God.  I love this about Job.  Why?  Because I’m just like him!  I have talked and talked and talked about life issues with others and chafed when the old standard Romans 8:28 (“And we know that all things work together for good to them that love God, to them who are the called according to his purpose”) was paraded out to soothe my ravaged heart.  Romans 8:28 is a great verse that is perpetually used in an attempt to comfort; yet, to the hurting, this verse feels more like bludgeoning or evisceration by biblical truth. It’s a verse, in my opinion, that should be proclaimed after time has passed and perspective has been gained, not when pain is fresh and raw.

The book of Job also provides an interesting glimpse of God, Himself.  Primarily, it declares His sovereignty.  But it also gives you a glimpse into His pride in His children (after all, He basically threw Job under the bus, using today’s vernacular, when He invited Satan to scrutinize Job’s life).  Here come the whys.  Why would God do that to Job (not once, but twice)?  Why do you think God wouldn’t explain Himself to Job?

We can only speculate as to why God would basically invite Satan to mess with Job.  It is plainly evident, however, that God was not concerned in the least with how Job would respond to the adversity that would shortly come his way.  As to why God wouldn’t explain Himself, again, we can only make an educated guess.

First, as Job realizes at the end of the book, God’s got it all under control and sees the big picture, while we can only see a small part of the whole.  Second, would any explanation really satisfy?  Many times I’ve tried to explain something to my teenage daughter only to give up because her level of maturity hasn’t caught up with her current circumstances.  Eventually, I end up telling her it is no longer up for discussion, amid her continued “but, but, buts,” wishing I’d never tried to explain myself in the first place.  God’s just smart enough not to engage in the conversation from the beginning.  His thoughts are higher than ours.  In our humanness, we simply lack eternal perspective.  The heart wants what the heart wants, and we are left sputtering our temporal “but, but, buts” before the One whose plans always bear eternal fruit.

So why am I babbling on about Job and my perspective on God from the book of Job?  I guess because at the end of the book, when Job is confronted by God, you see a shift in Job; you see an understanding of his place in relation to God, and it makes a profound impact on Job.  Still, the question that most begs a response is why Job was so desperate to argue his case before God.  What did Job hope to gain?  I wonder if he, like Abraham, understood that God could and just might choose to raise his children back up as Jesus did with Lazarus?  Job had that kind of confidence in God’s power. And when confronted with God’s power and the enormity of God’s interaction in the world as a whole, Job came to a place of acceptance for the losses he’d endured.

And that’s the point I’m trying to get to. I’m struggling, because I feel as if I immediately accepted the death of my daughters.  Is that even possible for a mother?  Have I lost so much, laid down so many hopes, dreams and expectations over the years that the lives of my daughters were just one more thing to lay at the foot of the cross?  Having lost Cole, having struggled through grief before, did I start this journey from a more mature position than when I last traveled this road?  Did that experience move me from the need for validation and justification to begin this journey from a position of acceptance and thereby an avoidance of the struggle that consumed me the last time around?

I can’t really answer that for myself.  But I do know that I immediately recognized the futility of asking why.  No answers will be forthcoming. While I believe that God is completely capable of raising my daughters back to life, we have the New Testament, and I know that isn’t His plan.  By the time I reached Bethany and Katie that day, the die had been cast. My daughters will not be returned to life here on earth.  Their days were numbered from the beginning of time.  They got every minute of life they were predestined to live.  Their lives on this earth were fully realized.

I have memories and pictures to cling to that were unavailable to me when Cole died.  One of the hardest things about losing Cole was the numerous things I didn’t know about him.  I didn’t know the color of his eyes, the sound of his voice or have any clue what his personality would grow to be.  All those unknowns created an enormous vacuum of pain within me.  There were no pictures and no memories to cling to.  Just loss, just unknowns.

Part 3 – Grief, Fear and Hope

Today, I’m thankful for pictures and memories.  I know that Bethany and Katie had blue eyes. I know the sound of their voices, their laughter and even how they behaved in anger, frustration and disappointment.  I know that Bethany was terribly smart, and she was generous and passionate.  I know that Katie was joyful always, that she loved deeply and reached out in compassion to others who were hurting.  I simply knew my daughters.

But there are things that are painful to remember as well.  Mistakes made, misunderstandings and hurtful words spoken in the heat of argument or from selfishness and a lack of maturity on both our parts.

Frankly, it is much easier for me to let Katie go.  Not that she was loved any less.  The difference between letting Katie go and letting Bethany go lies in one small yet significant detail.  You see, I’m confident of Katie’s salvation.  I know she is with her Savior.  She had not yet reached that point in development where she was pushing her parents aside and grabbing for greater and greater independence. She was on the cusp of that stage of life but hadn’t yet reached it.  Not so with Bethany.  She was fiercely independent, strong and smart, and we spent the years since she entered high school debating biblical teaching while she strained against parental controls, values and morals and political leanings.

Several years ago, I began fasting and praying one day a week for my daughters and their school.  Bethany was the impetus.  I saw her assimilating worldly ideas and rejecting biblical teaching.  I decided it wasn’t enough to pray for my daughters, I needed to cover the environment they were constantly exposed to in prayer.

Regardless, Bethany was enmeshed in the process of either rejecting the faith of her parents or making her faith her own. It was a painful process to participate in and watch at the same time.  Initially, my perspective was rather short term.  I’d pray, God would answer and it would be quickly resolved.  (At least, that was my hopeful plan).  Eventually, I recognized that, duh, this was all a part of the process of maturing.  I needed to dig in for the long run and prepare for things to get worse before they got better.  Which they did.  No she didn’t go crazy and start to drink and do drugs, but her thought processes became progressively more liberal.  In her freshman year of college she saw herself as a Christian and participated in a discipleship program on campus, although she selectively rejected passages of the Bible.  As a biology major, she was exposed to and eventually accepted the idea that everything must be scientifically provable.  We had the craziest conversations about gender (who knew there are many more than two?) and she became a feminist the first semester of her sophomore year at college.  She embraced gay rights and civil marriage and the legalization of marijuana. She eventually stopped referring to herself as a Christian and declared herself a secular humanist on Facebook.

I thought she had time.  What parent wouldn’t?  She was only 20 years of age.  And while I know that Proverbs 22:6, “Train up a child in the way he should go, and when he is old he will not depart from it,” is a proverb (a short saying that expresses a general truth – that nine times out of ten will prove to be true) and not a promise, I believed that Bethany might find her way back to the faith of her youth over time.

So that terrible day, as I knelt at the side of the road beside my oldest daughter, the words “Oh, God, Oh, God” poured from my lips and my heart shattered, not because she was no longer with me, but because her eternal future had already been decided.  There would be no more opportunities to discuss biblical truth with her.  No chance to see her work out her salvation.  No. More. Time.

I know there are faiths that believe you can pray a person into heaven; I think it stems from the belief in purgatory.  However, I find no such mention in the Bible.  No amount of begging on my daughter’s behalf will change her eternal destiny.  It is finished.

The front of my Bible is inscribed with these dates:  August 17, 1999; September 19, 2000; and October 3, 2002.  These are the dates each of my daughters accepted the Lord as their personal Savior.  I’m glad the dates are recorded.  They are my touchstones, my landmarks, as surely as the Israelites laid stones at the River Jordan on the day of their crossing into the Promised Land (Joshua 4:7-9).  This side of heaven, I cannot be confident of Bethany’s salvation, but I am not without hope.  The date is inscribed.  If Bethany was sincere in her desire to become a Christian on August 17, 1999, at just six years of age, then she was sealed with the Holy Spirit of promise that very minute (Eph. 1:13). John 10:28-29 further tells me, “I give them eternal life, and they shall never perish; no one can snatch them out of my hand.  My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand.” These words assure me that Bethany is, in fact, in heaven. And this is the hope I will cling to because it’s scriptural, and the alternative is too horrible to contemplate.

Maybe this best answers why I am a woman without words.  I need to cling to God’s promises, to the hope of Bethany’s salvation, far more than I need to articulate the fears that would certainly fill my heart and mind should I chose to question the sincerity of the prayer Bethany uttered that August afternoon. I will miss my daughters; I will grieve their absence; but I will not think too deeply about or continue to question Bethany’s eternal destiny.  I will, by faith, cling to the landmark date inscribed in my Bible and the promise of John 10:28-29.  I will not grieve as those without hope. Bethany may have wandered from the faith of her youth, but she was never, ever out of God’s reach.

Part 4 – Great Is Thy Faithfulness

Maybe you’ve seen this quote:  “Man says, “Show me and I’ll trust you.” God says, “Trust me and I’ll show you.”  I feel as if I’ve just lived that maxim. You see, those words above were penned a week ago.  Yesterday, I found myself going through some of Bethany’s things.  I uncovered several journals, most of which were either empty or had only a few entries. One such journal had several pages torn out of the front.  Only two entries remained. Here’s the first entry dated 4/10/11:

“Dear God,

I am in awe of you.  I am at the very beginning of my journey and I want to know you and love you more.  I want your desires to be my desires so that people can see you through me.  I don’t want to be lukewarm any longer, and I want to be free from the sin that so easily ensnares me.  I want to love more so that you can use me to further your kingdom.  Lead me not into temptation but deliver me from evil.  I ask for wisdom in my life and a stronger work ethic.  Please help me with my first day of work (Dairy Queen) tomorrow.  I’m so nervous.  Amen.”

This journal entry is a huge comfort to me. It addresses the two issues that challenged my confidence in Bethany’s salvation: the young age at which she became a Christian and her recent leanings toward secular humanism.  I know I’m not the first parent who has questioned the salvation of their child because their child’s profession of faith was made at such a young age.  We question the scope of understanding a child can have for such an important decision. We question the sincerity with which it was offered.  Bethany was 17 when this entry was written.  She had a complete and full understanding of the all-encompassing scope a decision to follow Christ entailed.

I believe this journal was God’s gift to a hurting and concerned mother, rewarding my trust in Him by uncovering Bethany’s heart for Christ through the words, once again inscribed, – a landmark left behind – a visual reminder of a significant moment in the life of a believer.  Though the prayer above is not reflective of the state of Bethany’s heart at the time of her death, the Bible tells us that at the point of salvation we are adopted into the family of God and sealed with the Holy Spirit of promise (Eph. 1:13).  While a person may reject or deny his or her relationship to an earthly father, a birth certificate serves as legal proof of paternity.  In the same manner, the seal of the Holy Spirit marks us for all time as children of the King.  Ephesians 1:14 actually tells us that believers are given the Holy Spirit as a pledge (or down payment) of our inheritance in heaven.  Bethany was sealed with the Holy Spirit long before she began grappling with the hot political issues of our day. Bethany may have turned her back on God, but He never rejected her.

Following Cole’s death, two Scripture passages meant much to me.  They are precious to me still. They come from Lamentations 3, and I prefer to read verses 32- 33 before verses 22-23.  They speak to me now in the midst of our sorrows:   “32 Though He causes grief, yet He will show compassion according to the multitude of His mercies. 33 For He does not afflict willingly, nor grieve the children of men.”  “22 Through the Lord’s mercies we are not consumed, because His compassions fail not. 23 They are new every morning; Great is Your faithfulness.”

While God allowed the accident that brought so much destruction to our family, we have experienced a multitude of His mercies at the hands of family, friends and even strangers.  We have been overwhelmed by the support we have received and the vast number of people who have reached out in love to us and covered us in prayer for healing, strength, comfort and peace.  God has answered those prayers, and we trust He will continue to show Himself faithful.

Part 5 – And the Story Goes On . . .

Tomorrow, it will be three months since the day our lives changed so drastically.  Three months.  It’s all so surreal.  But I learned something yesterday.  A psychologist told Gracen and me that often when people lose someone they love in a traumatic fashion, they suffer from shock. She said that the normal grieving process will be delayed until the person is capable of processing their feelings of loss and sadness, because they are busy coping with other, more pressing issues, such as their own physical healing.  I know her words were directed at Gracen, but they resounded within me.

I mentioned earlier how my grieving of Bethany and Katie has been vastly different than my experience of grieving my son, Cole.  I’ve been disturbed by my surprising lack of emotion.  Not that there haven’t been moments, but definitely not in proportion to the degree my daughters were loved.  However, I’ve also been aware that Gracen has real and immediate needs.  I can’t fall apart and fail to care for her.  The Father knows I can only cope with so much at one time.  Maybe He is allowing a postponement of the unveiling of my grief for Bethany and Katie until I can really embrace it without fear of failing to be the mother Gracen needs right now.

The psychologist’s words were a balm to my soul.  They’ve given me a measure of comfort because this numb blankness left me feeling like the worst kind of mother – the indifferent mother.  It’s caused me to doubt my love for my daughters. And those feelings (or lack thereof) are simply out of character.  I’ve always been the mother who experiences a great deal of angst over every hardship or disappointment my children suffer.  Why would I worry so deeply about Bethany’s spiritual condition and respond with anger and fear at the injustice of Katie and Gracen’s ARSACS diagnosis but not collapse in despair over Bethany and Katie’s deaths?  Why so much agitation over their daily lives and nothing over their deaths?

The psychologist promised me that one day I will experience the deep sadness and soul-rending sorrow of grief – and that’s a relief.  I’m normal.  But not only that; I loved my daughters deeply, and this lack of grief I’ve experienced is not reflective of the depth of my love for them.  It’s an enormous relief to know there is a logical explanation for how I’ve been coping since our accident.  The psychologist’s words have served to silence Satan’s subtle taunts.  Her words, her training and knowledge were God’s gift to me yesterday, and for that I am more than grateful.

 
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Posted by on October 1, 2015 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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