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Category Archives: Muscular Dystrophy

Pre-Move-in Day Challenges

move-in-dayAs the day dawned Friday morning it finally dawned on me how little time I had left with Gracen before the fall semester begins.

I sucked in a shallow breath.

Dread settled deep within.

The funny thing is, I’d been aware of this encroaching date all along. I just refused to think about it. I gave it an intellectual nod when the thought of her back to school date came up and quickly pushed it out of my mind.

But thoughts like those have a way of festering beneath the surface of one’s psyche. I’d noticed the signs—typical stress reactions for me. Nights spent reading that stretched into the wee hours of the morning or even until daybreak, the soreness at the tip of my tongue from rubbing it on the inside of my lower front teeth, the itchy feeling beneath my skin, a desire to write then frustration swelling when I was unable to put anything down on paper as my mind flit from one concern to the next. Creeping anxiety.

But it wasn’t until this morning that I counted the remaining days. Today, Saturday and Sunday. Move-in day—Monday afternoon. Then I will turn my back once again and hold my breath waiting and hoping.

Waiting for that phone call.

Hoping it doesn’t come.

You know, the one where a university official calls to tell me Gracen’s been hurt . . .

or worse.

Oh yes, worse is always on my mind.

Then again maybe you don’t know.

Maybe after you dropped your child off at college and piled back in the car your worries were vastly different from mine. Maybe you fret over poor judgment, too much freedom, a lack of academic commitment, or maybe you are more concerned about the echoing silence that will greet you when you once again cross the threshold of your home.

All those things bother me too, especially the silence, but mostly because I fear it could be permanent—that that last hug might really be the last hug—ever. That thought lurks.

The other lurking thoughts are regrets. Regrets for missed opportunities. Really for forfeited opportunities. Those I consciously chose to skip for reasons related to anxiety and depression . . . I’m ashamed to admit.

And that’s really it I think. Fear and shame constantly assail my heart and soul.

I should be handling this better.

I should be healing instead of falling apart more and more as time goes by.

I should be able to make decisions.

I should be less afraid of people; of social situations. What does it matter what anyone else thinks?

I should quit escaping into fiction.

I should, I should, I should, I should not. And every un-distracted minute is filled with shoulds, should nots, and fear—because anxiety is just a synonym for fear.

She’s sleeping late. Is she breathing?

Is she safe in the shower?

Will she be safe when she returns to school? Not safe from others. Not safe from impulsive decisions or risky behavior, but safe getting out of bed, getting in the shower, getting dressed in the morning. Safe doing all the simple tasks we routinely do without thought.

And fiction and sleep are the two activities that shut out the shoulds, should nots and fear.

But there are times when I can’t focus to read or write and sleep eludes me and that itchy, tingling feeling under my skin about drives me insane. I find myself frantic for some escape. Trapped inside this human shell while inwardly keening for release.

Now I understand why people drink to intoxication—the befuddled mind is their escape and they are pleasantly numb.

But there will be no escape for me. Just repeated hopping up to leave the security of my bedroom for some distraction only to find the available distractions (talk, TV & pets) annoying so I flee back to my bedroom. A shower maybe, but the pounding water doesn’t shut out my thoughts. A drive . . .

to the crosses . . .

only to feel frustration rise.

Oh to be able to rip the top off my head and let all the painful, toxic thoughts and emotions escape!

I don’t know how to do this, Lord! I don’t know what to do let alone how to do it. I spin in circles like the Tasmanian Devil and hear only silence from You. Unbearable silence. I’m defeated by the truth that there is no fixing this. There are no good answers. No paths without pain. No solutions whatsoever. I need You to speak, to step in, to do something—something I can see—something that won’t hurt. Something that reveals a purpose for this madness.

Something that carries me through Friday, Saturday, Sunday, and Monday. Something that prepares me for the silence I’ll return home to and wake up to Tuesday morning. Something other than the dread of that phone call coming; of the remaining pieces of my life-shattering at my feet.

I just need . . .

Something.

 
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Posted by on August 20, 2016 in Adversity, Faith, Muscular Dystrophy

 

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Déjà Vu Day Arrives

save-alarms
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)

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

 

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This Body of Death 

VR-JULY-7-24 - EditedI feel like I’m sinking—sadness weighing me down—regardless of the medications I’m taking. Why can’t I overcome this? Is it possible that trauma causes bipolar disorder?

I just want to escape this body of death. That phrase, “body of death”, had little impact on me before—before my world imploded. Now, well now, I have an entirely different view of—and response to—that phrase. Now it’s way too personal, way too descriptive!

Every day I am bombarded with the visual representation of that phrase. I perform acts of service that reinforce those images. I cannot escape this body of death and I desperately want to. I want to flee from the future and the daily reminder that things are just going to get worse—lots worse.

But there is nowhere to go, nowhere to hide and the only means of escape available is one which further injures those I love, who frankly, have already suffered enough—more than enough in my opinion.

Somehow I have to learn to live with the cumulative pain and losses of the past while surviving the emotional erosion of the soul caused by daily care requirements, simultaneously bracing for and absorbing the blows each new and upcoming setback includes.

I can continue to put one foot in front of the other (although I’ve noticed it getting harder and harder to do; which concerns me) but I have yet to discover an emotionally heathy way to cope with this life I’ve been left with.

Distraction, distancing, withdrawal and emotional numbing may be effective coping mechanisms to prevent a complete breakdown but they are not healthy. They are nothing short of a delaying tactic that builds barriers between an individual and the people they love and later serves to compound the pain in the long run.

Those coping mechanisms are a completely normal and common human response to emotionally deep wounds, I’m told, regardless of the cause. They are not unique to my situation. But when consistently exercised they heap guilt, shame and despair on the heart as the individual becomes aware that they’ve lost precious, unrecoverable opportunities to spend time and deepen relationships with those they love in a conscious or unconscious attempt to protect their hearts from further pain. And that awareness, when it can no longer be avoided, is nothing short of agony. Time lost cannot be redeemed in this earthly realm.

Some time ago I questioned my daughter’s physical therapist about the potential benefit of a medical procedure that had worked well for another child in the clinic Gracen receives services from. The procedure involves creating holes in the overly tight muscles of the legs so that the muscles will stretch and enable more freedom of movement.

The PTs response was that the tension–the tightness of Gracen’s leg muscles are the very thing that enable her to stand. Loosening those muscles would make her legs noodle-like; unable to support her slight weight.

IMG_1195I am very much aware of the painful emotions that accompany my past and current life circumstances. When I find myself confronted with “negative” emotions, I don’t allow myself the freedom to experience and work through them. No, instead I distract my mind from them primarily via fiction (emotional numbing) locking them to the far regions of my heart. I am constantly aware of the existence of this metaphorically locked box of emotions, but I refuse to open and cope with the contents. Shoot, I’m pretty sure the contents of that box are under so much pressure that the slightest move to open the box (maybe my next effort to shove new emotional turmoil into the box) will result in the contents being forcefully expelled like an erupting volcano — an apt description as rarely does a volcano erupt without prior warning and I’ve experienced years worth of prior warnings. Warnings that the pressure is escalating.

 

 

IMG_1200The tension required to push those emotional realities away, to pack them into my own personal Pandora’s Box, is the tension that my emotional health is standing, or maybe in my case a better word is “balanced” or “teetering” upon. Like a car precariously balanced upon a cliff, one shift in weight forward without substantial counterweight will send the vehicle plunging over the cliff.

Opening Pandora’s Box is the means to healing I’m told, but it is a terrifying prospect. It will push me over the emotional precipice and I fear what that will mean, what it will look like; what living with it, living through it, will cost and what, if anything, will be left of the woman I once was. And worst of all, my greatest fear, will I be left in a recoverable state?

images (45)On top of everything that implies, opening Pandora’s Box only allows past emotional trauma to be vented. How then, in this new weakened and vulnerable state, do I cope with the ongoing trauma progressive disease constantly thrusts upon me? Where is my shield of defense when the communication device or the stander is delivered? How will I cope with the installation and use of a tracking system in my home, let alone the day when it no longer makes daily life less physically taxing for both Gracen and I, but when it becomes a necessity I must use alone in order to properly care for her?

How will I cope in a healthy way with the complications that arise from a lack of mobility: pressure sores, stiffening and less moveable joints, decreasing core strength that results in the inability to sit up from a prone position and maintain an upright position once seated? How emotionally strong will I be when verbal communication is lost and I can no longer hear the sound of my daughter’s voice?

IMG_1201The boxer in round ten is less capable of withstanding a body blow that was thrown with far greater force in round one. The boxer’s split skin, bruises, and broken ribs don’t heal between rounds. He just rests, catches his breath, gets his cuts taped up and smeared with antibiotic ointment while receiving instruction and encouragement to continue the fight.

Is this not a picture, yet another metaphor, of the Christian life? God binds up our wounds between rounds, but the damage inflicted in the early rounds affects our ability to fend off and endure the blows taken in later rounds. Training, muscle memory and endurance developed prior to the fight are the believer’s  primary form of defense in the midst of the fight.

When the metaphorical boxer ignores the instructions, is unable to rest as adrenaline floods their system,  rejects the antibiotic balm and encouragement in the early rounds as young, brash believers are known to do, determined to “Do it My Way” as Sinatra sings, ineffective strategies are employed and more blows from the opponent successfully land escalating pain and weakening the cocky boxer.

Come the later rounds, desperate for the ministrations pridefully refused when the fight began, the beleaguered boxer attempts to tune his ear to those words of instruction. Humility has replaced pride and his brain, so distracted by pain and fatigue is far more inclined to seek and listen for the guidance of the Holy Spirit as we rest on the Cornerstone of our faith in dreaded anticipation of the sound of the bell that propels us back into the fray. And when the final bell rings we either find ourselves flat on our backs from a knockout blow or in the middle of the ring, beaten, bruised, and so fatigued that we can barely lift our arms in victory.

The bell has rung repeatedly in my life and I’ve been forcefully shoved back into the battle over and over and yet again. So weak, dreading the next blow that I know without a doubt is coming, trying to simply raise my arms to protect myself. Too tired to be effective, desperately attempting to put into action the instructions received in the corner, I huddle against the ropes frustrating my opponent and the audience who scream at me to step into the fight, defend myself, and destroy the enemy who contends for my faith.

IMG_1205What will be my fate when the fight ends? Will God step in and call the fight? Will I find myself stretched out on the mat breathing heavily but defeated all the same or will I be doing my best to hold my hands up in victory when the final bell rings?

Your guess is as good as mine!

 

IMG_1203I hope to be silently caught up in the air as God calls the fight or to hear the sound of the trumpet signaling the arrival of my Savior, rescuing me from this body of death and torment. But I fear I will continue to find myself stretched out on the mat breathing in the stale and bitter aroma of sweat and fear–yet another bout in my future, yet another beating to endure. Will I enter the ring the next time stronger and better equipped?

Will I ever find myself hands raised, a victor over the cares of this world?
 
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Posted by on July 6, 2016 in Adversity, Faith, Muscular Dystrophy

 

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Welcome to Paranoia!

(Originally published on Facebook 11/17/14)

letter-to-mePlease 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. (Link highlighted in red below)

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 my 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 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. Phillips, a new pediatric neurologist had arrived in NW Arkansas (actually, I think she was the only “pediatric” neurologist in the area at that time). 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 a fellow neurologist, and became Dr. Balmakund. When her husband began working at the same clinic, Dr. Balmakund became known as Dr. Mrs. Balmakund. She is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others; medical professional or not. She loves her patients and their families. She takes her undiagnosed cases to monthly conference calls with her peers and 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 willingly sent us to other specialists and eventually one, who himself, was unable to provide a diagnosis, did suggest two tests that might reveal one. After jumping through a series of insurance hoops, a full fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.

Yipee, 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 neuropsychologist to help us work through our fears and concerns and to guide us in the best way to inform all three of our daughters of the less than desirable diagnosis we’d received. 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 a 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 they’ve simply stepped up and in.

Drs. Karkos, Scott and Balmakund have done for me what the woman in this article did for herself. 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 limited roles, appearing at just the right moment, and some who’ve stood in the gap for a season, and many who have walked alongside us for years — serving as the hands and feet of Christ with a word of encouragement, extending simple kindness, or doing the heavy lifting by praying us through concerns, 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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Laughing at my Nightmare

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Stumbled across this book on my library’s digital books website. This young man has SMA, a rare form of Muscular Dystrophy (think Jerry Lewis telethon). It’s different than Gracen’s ARSACS, but both fall under the MD umbrella.

He writes with no small amount of humor and a liberal use of profanity (he particularly enjoys dropping the f-bomb) about growing up and living life with a progressive, terminal illness. (Not all forms of MD are terminal).

The chapters are short, you will laugh out loud, but you will also get a glimpse of how a disabled person views themselves, their fears, their courage, life’s hurdles, and hope amid increasing dependence and diminishing abilities.

It was an educational read for me. I know how I feel, the challenges I’ve faced as a mother of a disabled child, but I can’t crawl inside Gracen’s mind and really appreciate what it’s like for her. I can only imagine and that is hard enough.

Like Gracen, this young man’s disability does not affect his intellect. The book reveals the ways in which people of all disabilities are often grouped together. The author is blunt and not always kind, but his attitudes are reflective of the larger “healthy” community and of a young man’s thoughts and attitudes as he matures. So, a parent with an autistic child may find some of what he writes mean-spirited or otherwise offensive. I hope you will recognize Shane is a young man coming of age in challenging circumstances and is simply learning how to live with his own personal reality (nightmare) using humor as his primary coping mechanism.

It’s worth the read if you have any desire to more clearly recognize some of the unique challenges the disabled community encounters.

One more disclaimer: This young man does not shy away from uncomfortable topics including human body parts, urination, and sex – all normal parts of any healthy young man’s life. If that and foul language offends you, it’s probably not the book for you.

 

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Two Years Later . . .

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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 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.

 

Two Years Later . . . 

This morning, the 2nd anniversary of Bethany & Katie’s deaths, I woke up in my in-laws guest room and told the Lord,

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I miss my babies.  I miss the life I used to live.  I miss the sweet ignorance of not knowing what disease plagued Gracen and Katie’s bodies, the unappreciated bliss of an unknown prognosis.  I miss my failure to understand that You, Lord, promised to walk through this life of trials with me, never once leaving me, but not to protect me from the free will of others and not to make life pain free.

 

I miss waking up with purpose.  Waking to enjoy the the birds singing and the sun shining.

I miss hugs and smiles and laughter — the sounds of life in my home.  I miss making cookies just to hear Katie’s whoop of joy.  Watching David and Bethany laugh over movie lines that cause me to roll my eyes.  Seeing Katie sit at Bethany’s feet joyful that her big sister was home from college.

I miss arguments and bad attitudes and snark and sass.  I miss seeing Katie curled up in David’s lap to watch a movie, David teasing Bethany and listening to him negotiate with Katie for hugs and kisses.

10246606_730773960317860_6144985397676167154_nI miss sibling rivalry and laughter and two ganging up on one.  I miss hearing how Gracen stood up for Katie at school, how Bethany watched out for Gracen and coming home to find all three watching music videos loud enough for the neighbors on either side to enjoy (?) too.

I miss praying for Bethany and Katie.  I miss inviting You, Lord, close instead of desperately clinging to You.  I miss what was and will never be again.  I miss the life I’d planned to have.  I miss ignorance and curse knowledge and I hate the last images of Bethany and Katie seared upon my mind, taunting me with their stillness, eyes once full of life and love vacant and unseeing.

I miss the me I used to be; the me I wish I could be again.  I miss the me who did not live with the ever present ache of loss.  The me who did not have to fortify herself for a simple trip to church, the me who did not have to plan in advance answers to everyday questions to guard my heart, my privacy and to avoid making others uncomfortable.  I miss genuine smiles.  I miss the ease with which I faced a day and the dark of night; of restful sleep, a focused mind, and simple motivation.  I miss anticipation and excitement.

IMG_3507 (2)I miss having all the bar stools at my counter filled. . .  I just miss so much — it all haunts me while I’m simultaneously thankful for Gracen and David.    Joy and sorrow side by side — both aware of all I have and all I’ve lost in every moment of every day.  One word defines my life — bittersweet.

And as I rolled over and curled in upon myself, I asked the Lord to help me get up and get going, to be a good house guest, to ignore the onslaught of sorrow, deep and numbing. To be able to be present instead of withdrawing from everyday conversation in desperate need for time alone — for the distraction fiction provides.

I finally rose at 10:30, hours later than I usually rise when we visit Kansas City.  And when I entered living room Sunny greeted me with a warm, “Good morning sleepyhead”, and Donna quietly went about frying an egg for me, then sat down at the table to visit with me while I ate.  No frustration, just uncomplicated acceptance and the kindness they have always shown me over the last twenty-eight years.  I found my heart full to the brim with both gratitude and sorrow — both of which my wonderful in-laws share with me.  I am not alone in my loss, in my sorrow, and in gratitude for what remains.

Empathy (shared sorrow) is so much more comforting than the fellowship of sorrow and pity. Pity pops in to express sympathy and promptly exits. Pity is love without commitment. It lures and deceives the grief-stricken with a promise of support only to silently slip away. Shared sorrow blesses the grieving by claiming a seat at the table of sorrow and dining on the bitter taste of disappointment and despair; drinking from the cup of agony before pulling out the dessert plates and loading them up with the sweet savor of united hearts and minds.  Shared sorrow is committed love.

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Helping the Bereaved Bear their Burdens

1.  People outside the immediate circle of loss, tend to view the death of a loved one from a broad, general perspective.  The bereaved grieve in fine detail. Acknowledging specific losses, unfinished plans, a lost legacy and the empty seat at the dinner table communicates to the bereaved that you care about the depths of their loss.

e9ee9b4bef3f86fba3571ecd3f0cbe512.  Speak the loved one’s name.  When a baby is stillborn or dies shortly after birth the family is left with a void they are unable to fill with memories of their child.  Using their child’s name, asking about the infant’s birth weight, length and hair color affirm the child’s worth. Avoidance equals isolation.

3.  Speak the loved one’s name-regardless of their age at the time of death.  As time goes on, the name of a loved one is spoken less and less frequently.  The bereaved want their loved ones remembered.  Mentioning their name, telling a family member you thought of their loved one and you miss them is a great blessing.  Speak about their loved one in a positive way, don’t just say how sorry you are for their loss.

4.  Many bereaved parents feel as if others treat them as if they are cursed following the death of a child. Avoiding bereaved parents because you are unsure what to say or do can frequently be perceived in unintended ways.  So, avoidance is not the answer. Call or visit and simply say, “I have no words.” “I don’t know how to help, but I want to be there for you. Tell me what you need to hear from me.”, and if you love the bereaved person keep trying to reach out, but don’t make them responsible for making you feel comfortable in their presence.

5.  Don’t expect the bereaved to step back into ministry roles and other normal activities. Some will return quickly, some will take six months or a year. Some will never return to that specific ministry or activity. Be sensitive. Churches are often in need of members to serve, but be careful not to push.

cdd180cb45e020a4fd5a2efa4c6415dd6.  Never compare the loss of a loved one to the death of a pet (it’s more common than you think). The loss of a child and a spouse are the most devastating losses the bereaved endure. Don’t tell the grief-stricken that you understand how they feel because you lost a uncle, grandparent or parent. The level of intimacy in the severed relationship determines the depth of grief experienced.

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 7.  When a parent loses a child, never say, “Well at least you have two more.” or “Be thankful for the ones you still have.” The death of one child doesn’t negate the parent’s love for the rest of their children. Grief and gratitude can and do co-exist. And the birth of subsequent children do not replace the child that died.

8.  Don’t be offended if the bereaved don’t personally call you to notify you of the death. It is not at all unusual to for the bereaved to be too emotionally overwrought to call even their closest friends and family members. It’s is however, very common to contact one family member and ask them to contact the rest of the family. It’s not a slight. Some are busy at hospitals, others are in shock, and some just can’t speak.

9.  Don’t ask for details especially in the case of suicide, murder, or accidents. Those who need to will share that information with someone they are close to. Others do not want to remember their loved one that way and may have been traumatized by things they’ve seen and experienced. Rehearsing it is retraumatizing and sometimes leaves the bereaved feeling as if you care more about the gory details than you do about them.

10. If you have pictures of the deceased, email copies or get prints made and bring them to the family. Every picture is a coveted treasure.

 
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Posted by on February 28, 2016 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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Breakdown & The Calm After the Storm

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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 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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Breakdown

It’s time to get up, past time really.  Breakfast, shower, dressing . . . then my turn.  It all takes time, but I just do not want to get up and we’ll be late if I don’t get moving soon.

It’s raining.  Again.  I hate rain during the daytime.  Hair appointments at noon.  Still, I’d rather stay in bed.  Bury my head in my pillow — close my eyes — forget the world, it’s disappointments, my responsibilities — life and the fact that I’m still living it.  Breathe in, breathe out.  Breathe in, breathe out.  Over, and over, and over, and over, and over, and over again.  Why must I get up?  Why must I breathe in and out?  Why must I do it all over and over again?

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For the love of Gracen.

For the love of Gracen.

It’s all for the love of Gracen.

 

 

IMG_2964 (1)My heart is anchored here but I long to flee — from what happened — from what is yet to come — to fly far, far away.  To flee this unwelcome reality — oh, to be able to pretend it never happened!  To be able to board a time machine and travel back, back before the collision, back before diagnosis, back before Katie, before Gracen, before Bethany and Cole.  Back before marriage, back before love, back before David, back before my very existence, erasing every footprint, every memory of me.  Back before every bit of my existence tainted the lives of the people I love far more than life.  Just to have the opportunity to un-hurt others by erasing me.

It’s 10:34 a.m., I have to get up . .

I can’t.  I just can’t do it.

Tears falling.

Call David ask him to cancel our appointments.  Ring, ring.

Oh, no, she’s up! Hang up the phone.  Get it together before she sees you!

IMG_3518Ring, ring . . . Oh, crap, David’s calling back and Gracen’s right here!  I can’t talk in front of her.

Leaping off the bed, head down.

“Hey, Janet, Did you call me?”

Leave the room NOW!  Find a place where she can’t hear you!

“Janet, I can’t hear you . . .”  David’s voice comes over the phone line.

Sob.

“Janet?  Janet? What’s wrong?” David’s voice is Frantic now.

“David?”

“Janet?, What’s wrong?”

More crying.  I hear David’s breath hitch through the phone line.

IMG_3518“I’m sorry I had to leave the room.”

“Where’s Gracen?”

“She’s up.  She’s in the bathroom.”

“What’s wrong?”

Another sob slips out.

“I’ve just run out of the energy necessary to force myself to do this today.  I was just calling to ask you to cancel our hair appointments.”

“I’m coming home.”  Frantic.

“No, no, don’t come home.  I’ll be okay.  I’ll be okay.  I just can’t keep our appointments. Not enough time left now anyway.  I’m up.  I can take care of Gracen.  I just don’t want her to see me like this — to worry her.”

“Where are you?”

“Katie’s room.” The room next door to Gracen’s that now holds two twin beds without sheets and blankets, void of anything personal.  Katie’s empty room spins through my mind.

“I’m sorry for upsetting you.  Can you please just cancel our appointments?  I can’t talk to anyone right now.”

“Sure”

“Don’t come home, David.  I’ll get it together.  I’m sorry. I’m so sorry!”

Forty-three more days until Gracen heads to college.  I simply cannot unravel for forty-three more days.  I tell myself, take your meds —  get it together.  You can get up for forty-three more days.  You can.  You can.  You will.

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The Calm After the Storm

Wow! How did that get so out of control?

It was Gracen’s appearance at the same time David called back. The ring tone flooding my system with adrenaline, silent tears turned to sobs as I desperately tried to flee my room preventing Gracen from seeing me in such a state.

Oh, she’s seen me cry before, but only the controlled version.  Not ugly, wretched sobs.

But today I was not able to shelter Gracen from my grief.  I upset her although no words were spoken.  I know she is afraid she will lose another family member; she recently admitted as much.  I fear that too, but for her, all that’s left to lose are her parents — the people who have always represented safety and security to her.  I don’t want to inflame her fears.

And David — he’s seen discouragement and apathy, he’s held me through tear filled nights, he’s shouldered extra burdens when normal parts of life just seem to overwhelm me.  He’s been party to a meltdown or two or ten, but to receive a call at work — never before has he had to cope with a long distance breakdown even when I called to tell him an ambulance was transporting Gracen and I to the ER after a frantic 911 call. Today, I could hear the fear in his voice. It devastates me to know I did that to him!

Heaping fear upon grief — I shoulder my load — Gracen’s and David’s too, as they are forced to shoulder mine as well.  Grief felt far more individual when Cole died — or maybe time has just softened the memories, blurring the rough edges of grief, leaving some sharp and biting and others smooth and fading.

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Helping the Bereaved Bear their Burdens

1.  Understand that it is often a struggle for those who mourn to get out of bed, do everyday tasks, leave their homes, socialize. Others become hyper involved; anything to keep themselves moving, distract themselves from the constant pain. Those who mourn may bounce back and forth between the two extremes.

2.  Realize that the bereaved often perform a grieving cha, cha, cha of sorts.  They try to attack their grief, process and get through it, then overwhelmed, try to suppress it, hide from it, deny it’s existence and ignore it.  Be prepared to go with the flow.  Talk through their struggles with them if they bring them up, or grant them the freedom to talk about other things.

3.  Be aware that grieving families often continue to be hit with additional health problems, trips to doctors, hospitals and emergency rooms can trigger mild to dramatic IMG_3339traumatic responses. What may be a minor problem produces anxiety on steroids. Pray them through, sit with them, validate their fears.

4.  Wives seem to take responsibility for maintaining the emotional equilibrium in the home: husbands strive to protect and shelter.  Loss makes both feel anywhere from inadequate to utterly incompetent.  Grieving men need attention too. Most will never ask for it. Invite men to sporting events, movies, poker night, fishing or lunch. They may not talk about their grief, but your presence signals support and encouragement.

5.  Understand that deep grief often brings remorse for having been born at all.  Job felt this way.  Pay attention to suicidal comments — don’t discount them.  A desire to have never been born and suicidal intentions are not synonymous, however, comments to that effect should not be overlooked.  Pray for wisdom and discernment to hear exactly what the individual is communicating through veiled speech.

6.  Be aware that the sense of personal safety and security has been destroyed for every member of the family.  Fear of experiencing another loss  is both common and rational. While uncommon, many families have suffered separate and subsequent deaths of immediate family members. Please don’t discount or brush off a bereaved parent’s fears in this area. It is a legitimate fear and they need it acknowledged.

 
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Posted by on February 27, 2016 in Faith, Grief, Muscular Dystrophy

 

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