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Tag Archives: Sorrow

An Unconventional Father’s Day

I wrote this article a year ago. It takes a look back (almost 25 years now) to a time filled with great anticipation and excitement. David and I had been married five years when the events described took place – events that became defining moments in our lives in ways we never could have foreseen.

A silent shift occurs within as the last day of the calendar month of May is torn away. We are propelled into June, and weddings, which serve as a smoke screen of sorts for me as the countdown to Father’s Day begins. When May turns to June, the reel of memories begins running complete with the clacking sound of film spinning and flickering projector light. The film runs on repeat in my mind day after day as the calendar marches ever onward. Why don’t you come along for the ride?

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Posted by on June 14, 2017 in Adversity

 

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Down the Damascus Road, Again . . .

damascusroadI have found there are points in my life where I find myself completely unable to accept God’s obvious plan. Maybe you’ve found yourself in a similar situation? It’s what I refer to as my “Road to Damascus” experience. By that point in time I’m filled with frustration and anxiety and doing everything I can in my own power to change the circumstances I find myself in only to have God pull me up short and shine a painful, blindingly bright light of truth down, revealing that I am not just kicking against the pricks but actively working against His greater plan.

It’s hard to describe how it feels to know that the thing you least want to accept in your life is an irrefutable part of God’s plan. Oh, to be a two-year-old again so that the temper tantrum I want more than anything to throw, while not tolerated, is at least understood.

Harder still and completely beyond my human capabilities, is the ability to change the desperate desire of my heart, let alone make any attempt to surrender and embrace God’s unacceptable plan.

I firmly believe changing the heart and embracing God’s plan only happens at the point where a believer’s brokenness is met by the active work of the Holy Spirit in that believer’s life. Surrender definitely comes before embracing the plan.

In fact, embracing the plan may never actually happen and it may not even be something God expects from me — from any believer. Maybe all God really expects is for us to quit actively working against Him — not because we have the power to prevent His plan from unfolding but because the fight — the anger, fear, frustration, anxiety and bitterness exhausts and destroys us from within.

Maybe simple resignation, surrender to the inevitable, is a victory in and of itself. Maybe surrender, resigned or not, allows one the energy to take the next step, endure the next blow, and the next, until only the sorrow and quiet emptiness remain leaving room for the Savior to fill you from the cup of consolation and enabling the broken believer to receive the only remaining hope worth clinging to — an eternal future promised to stand in stark contrast to every aching moment the present reality reflects. Maybe that’s sufficient until the day we are made like Him.

 
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Posted by on October 1, 2016 in Adversity, Faith, Grief

 

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Questions I Ask & Thoughts I Ponder

The Apostle Paul said in Philippians 1:21,

“For me, to live is Christ and to die is gain.”

I can in no way claim to be anything like the Apostle Paul, but I can relate to his statement – if not in whole, then in part.

For me, to live is to care for Gracen, and I desperately want to be there for Gracen, but to die . . . to die is gain.

In our day and age, no one wants to hear that sentiment expressed. Maybe it makes people fearful that I might harm myself, but I wonder if maybe it is more about an individual’s fear that at some point in their life, they might find they desire death over life.

I have an eternal hope.

Death is not something I personally fear.

And neither did the Apostle Paul.

And if . . . if God’s purpose for the latter part of my life is to care for Gracen . . . if that is my ministry and service for Christ, then am I not, in effect saying just as the Apostle Paul did, “For me, to live is Christ and to die is gain”?

Is it spiritual to laud his statement and rebuke mine?

If we as Christians are to be Heavenly minded, is it wrong to long for our eternal home?

Is it wrong to desire Heaven more than we desire this temporary world we currently reside in?

Do we unconsciously believe Paul’s ministry, the ministry of evangelism, is the pursuit of Christ and His desires, whereas ministry to the members of our family or the sick really doesn’t equate to living for Christ?

img_1412-1Is that why my longing for my eternal home is met with admonitions that I must have hope? That it is wrong for me to desire the rapture in order to escape these earthly sorrows?

Is that really wrong?

Does my motivation somehow make my desire impure?

Does God care why I desire Heaven or just that I do?

Does not a longing for my eternal home reflect the deepest trust that I, in fact, have an eternal home waiting for me?

Does it not reflect true faith?

And should I lose it all—should I lose both David & Gracen—what, if anything, would be capable of anchoring my broken heart to this earthly prison?

I know what the answer to that last question should be. I certainly don’t need anyone to educate me with the “correct” response. But what “should be” and “what is” are often two different things. I know that my mind and my emotions will not agree if my worst fears are realized. I know they won’t. They don’t now.

These are questions I ask myself.

Maybe that last question is the reason people so adamantly attempt to cram the necessity of hope down my throat.

Maybe that’s their secret fear too.

Maybe no one knows what would hold enough sway in their individual lives to anchor their souls to this world if they lost everything they value most in this world.

Maybe—God help us all—maybe there is nothing strong enough to do that for any of us.

img_1416Maybe that’s where the Holy Spirit steps in and performs a supernatural work in our hearts that enables us to receive God’s all sufficient grace instead of rejecting it in our agony . . . instead of taking action outside of the will of God due to complete despair and utter desperation.

These are thoughts I ponder.

I’d love to know how you answer these questions—if you think these same thoughts.

 
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Posted by on September 10, 2016 in Faith

 

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Philosophical Thinking, Unicorns & Rainbows

8 Great Philosophical Questions That We’ll Never Solve - Does God existOn my more philosophical days, I have been known to think that I am far more blessed than those around me who seem to live lives devoid of tragic loss and health challenges. Truth be told, I’ve not found myself terribly philosophical in the two and a half years since Bethany and Katie’s lives were stolen by the selfish and reckless actions of an unlicensed driver. But I remember those moments in what feels like the distant past.

Life is hard. Circumstances have driven me to my knees literally and figuratively. In fact, circumstances have led me to a full body prostrate position, the nubby carpet of my bedroom floor, imprinting my cheek as I’ve petitioned the Lord for the hearts, souls, and health of my children.

And I’ve lost. I’ve lost too many of the things I love most in this life. No great spiritually inspiring story to be told. Just loads of heartache, anger, and questions for the One True God of love and justice.

Loss and heartache translate into vulnerability and weakness. And in this day and age both are intolerable to society at large. We are a nation of overcomers. We pull ourselves up by our bootstraps and keep going. We deceive ourselves into believing that through sheer force of will and dogged determination we can overcome every challenge, every trial in life.

I-have-the-strength-to-overcome-the-impossible.

We perceive ourselves as strong when we ignore negative feelings and refuse to be beaten by circumstances beyond our control. We pat ourselves on the back (as do others) for moving forward while we are really undermining our future health and happiness by ignoring or repressing emotional needs all in the effort to meet societal expectations and exercise control over the chaos that has somehow infiltrated our lives.

images (44)According to John Powell, author of Why Am I Afraid to Tell You Who I Am? the two major causes of anxiety are supercharged repressed emotions and unmet emotional needs. Emotional needs include the need to feel accepted, approved of, believed in, forgiven, listened to, needed, important, useful, respected, valued, supported, understood, in control, trusted, and worthy to name a few. The cultural demand to overcome, to turn every negative into a positive promotes and encourages the unhealthy practice of ignoring emotional needs and repressing negative emotions.

I fear this secular theology of overcoming against all odds, when boiled down reveals that we believe ourselves to be, or are bound and determined to make ourselves, God. And these efforts, are obviously in utter and complete opposition to the doctrine of the Bible.

The philosophy that enables me to believe that I am far more blessed than those whose lives appear to be filled with unicorns and rainbows, is grounded on the Biblical truth that I am NOT God. I am not capable of independently and self-sufficiently controlling and overcoming the chaos that surrounds and invades my life.

Tragedy, weakness, and suffering have driven me to work out my salvation. I’m constantly comparing my beliefs to the Word of God which reveals secular untruths I have absorbed, personal misconceptions or interpretations that don’t hold up under stress or simply an incomplete understanding of scripture.

I fear that the average Christian, myself included, doesn’t hold up the shield of faith in order to protect themselves from Satan’s fiery arrows but instead in an effort to hide their vulnerability and project an image of spiritual maturity to a watching and expectant audience of believers and non-believers alike.

Somehow we have interpreted the shield of faith as an impenetrable barrier of protection from pain instead of protection against Satan’s deceptions and lies than weaken and destroy the very foundation of our faith; trust in God Almighty.

Weakness and dependence are paradoxically the strength of the Christian faith. The beauty of weakness is the revelation of Christ’s power at work within us. A supernatural strength is inexplicably revealed through our weakness and humility that far exceeds the strength manufactured by force of will alone. Is this not why Paul said in 2 Corinthians 12:9b-10, “Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”? (ESV)

In my humanity, I desperately long for a life filled with unicorns and rainbows. I long for a life that is filled with nothing more than common everyday hardships; car repairs, defiant children, financial fears. Garden variety, everyday frustrations, and irritations.

Dark Clouds an Little Blue SkyGiven the opportunity, I would rewrite the story of my life. But in the recesses of my mind, the storm clouds of sorrow shift and briefly reveal the truth that hides behind; losses and sorrow have gifted me with things of great value. Empathy, compassion, and understanding poured out on others in an effort to help meet their emotional needs. The assurance of my salvation and an awareness of the solid foundation of my faith even as it is battered by the storm. The development of a more holy and heavenly perspective. And then the wind picks back up shifting the storm clouds once again obscuring those encouraging truths. And I am left frustrated and discouraged instead of philosophical; feeling more cursed than blessed, desperate to escape the suffering that plagues my daily existence and longing for unicorns and rainbows.

 
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Posted by on July 2, 2016 in Adversity, Books, Faith

 

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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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I Can’t Do This Anymore!

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

 

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I Can’t Do This Anymore!

deep-sorrowThere are days and moments and very long nights when I think, I can’t do this anymore. Come to find out, that simple thought is a trigger for tears.

Intellectually, I know I can.  Physically, I know I can.  Emotionally, well there’s where the breakdown happens.

I don’t know if my impending empty nest is permanent or temporary.  I know who I am for the next three months but not who I will be after that.  I’m really afraid of that answer.

Emotionally I am weak, very weak.  Within the borders of my emotions I fear failure — to prepare Gracen for what’s ahead for her physically — to be there for her in an effective way — to watch her experience the devastation wrecked by progressive disease — to experience it for myself alongside her — to watch David experiencing it alongside her, alongside me. To see the toll it takes on each one of us individually as we somehow images (42)continue to put on a brave face and hide the true depths of the pain and sorrow from each other so as not to increase their individual burden in this bizarrely intertwined protection dance we unconsciously perform.  And as all this plays out within our home and personal relationships, the current culture demands that we have a positive attitude and recognize our blessings. It’s exhausting. It’s overwhelming.  It’s frustrating. It’s impossible.

Moments such as this one, Progressive Disease – A Moment of Triumph, are rare and bittersweet.  (At the beginning of the clip, keep your eyes on the right side of the screen so you don’t miss Gracen’s appearance.)

“Don’t be afraid — trust God”, we are told in the midst of situations where there are very real things to fear.  Sorry, those commands, biblical or not, are not helpful.  I’m not saying they are wrong, just that they aren’t comforting and encouraging. It’s almost impossible to talk yourself out of fear — especially after your worst fear has already been realized. Those words, “Don’t be afraid — trust God”, heap indictment of failure on already emotionally overburdened believers who interpret those words as an accusation — “You aren’t trusting God”, instead of as the encouragement they are intended to be. At the same time, the searing pain within testifies to the truth that what we are trusting God for is eternal in nature. We are terrorized by the knowledge that our desires, for ourselves and those we hold dear in this temporary world, play second fiddle to God’s purposes.  This, of course, I can attest to from all too much personal experience. God’s will serves our ultimate eternal good but the rub is that we reside in the here and now. And while from an eternal perspective our lives are no longer than a blip on a radar screen, in the here and now that blip lasts ten, twenty even thirty years or more.  Our afflictions are light and momentary from an eternal perspective but they don’t feel that way in the day to day.

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Yes, I need to cultivate an eternal perspective, lay up eternal treasures, yadda, yadda, yadda.  But frankly, there are days, moments and very long nights during which I’m too emotionally frightened and exhausted to exercise my spiritual muscles.

 

 



 

Helping the Bereaved Bear their Burdens

1.  Pray that the bereaved will put on the full armor of God.  Their faith is under attack and they are exhausted and deeply vulnerable.

disenfranchised-grief-52.  Avoid the use of platitudes and trite phrases. They serve to frustrate and unconsciously communicate unintended messages.  (i.e., faith and trust in God mean things hurt less, our hope for eternity exchanges grief for joy, joy and happiness are the same thing, the salvation of the lost justifies the death of a loved one).

3.  Be extremely careful in the use of 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.” (KJV)  There are a time and place for every season under heaven.  There are a time and place for this verse. I personally think it’s more harmful than helpful in the face of raw grief and more appropriate a year or two down the road when the bereaved can look back and hopefully recognize the fulfillment of this promise.

4.  Be cognizant of the fact that believing God has filtered everything through His hands before allowing it to happen can lead a believer to blame God for the tragedies that befall them.  In truth, spiritual warfare, an individual’s exercise of free will or the fall of man that affected all of nature are responsible for the death of their loved one. The fact that God allows bad things to happen to His children is not the same as causing bad things to happen. For all we know, Satan was tempting while God was pleading when another’s actions lead to the death of a loved one. “For ours is not a conflict with mere flesh and blood, but with the despotisms, the empires, the forces that control and govern this dark world–the spiritual hosts of evil arrayed against us in the heavenly warfare.”  (Ephesians 6:12 ~ Weymouth New Testament).

0372730254f966f20889e1599ae7c79d5.  Validate feelings.  A grieving father who feels like beating the crap out of the person responsible for their child’s death is normal.  It’s okay; it’s helpful actually to say, “I’d feel the same way if I were you.” Validating feelings in no way condones sinful actions. Feel free to tack on, “You’re not planning to act on that, are you?”, if in doubt.

6.  Do NOT correct the emotions of the bereaved. Emotions are not right or wrong; they were designed by God and serve a purpose.  A fellow new-perspectives-in-borderline-personality-disorder-73-728mourning mother recently told me, “Emotions are for emoting.” How an individual responds to their emotions can be right or wrong but never simply expressing them.  Do NOT tell the grief-stricken that they can’t or shouldn’t feel any given way or that their feelings are sinful!

7.  Affirm the bereaved’s ability to continue on.  Be there for them through cards, text messages, phone calls and lunch or dinner dates.  Don’t take it personally if your call and invitations go unanswered. Simply try again another time.

download178.  Before you offer any advice, imagine yourself in that individual’s shoes; then personalize the advice.  You are now the parent whose child just committed suicide. Consider how you might feel should someone tell you to count it all joy, or that God is good all the time, etc., before you offer any advice to the bereaved. Perspective changes when things get personal.

9.  It is indeed rare for a bereaved person to continue in deep grief for an extended period of time (more than two years).  There are always a few who never recover, however, Christians need to trust that God will heal the hearts of the bereaved as His word promises, in His time. There is a time to mourn and a time to dance (Ecclesiastes 3:4b KJV). When you encourage a fellow believer to move on, choose joy and be thankful for what they still have, you are, in effect, expressing that you yourself don’t trust God to heal their grief, but instead believe that the grief-stricken Christian must work to heal themselves.

 
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Posted by on February 24, 2016 in Adversity, Faith, Grief

 

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Hard Times, Satan’s Devices & Faith

Hard Times, Satan’s Devices & Faith

The last quarter of 2015 was particularly hard for me.  Gracen had settled in well at JBU, David had changed responsibilities at work, which he was really excited about.  I on the other hand, encountered, a big gaping void.

Preparing to send Gracen to college and living independently after I had spent the last year and a half helping with her personal care needs, left me anxious on a level I’d never experienced before.  Her physical safety was my primary concern and following the deaths of three children, let’s just say I had little confidence that I would not lose Gracen too.

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In addition, in April or May of last year I began fielding a new and distinctly different set of questions.  With graduation on the horizon people began asking me what I intended to do with my time – with the upcoming “empty nest”.   Not one person acknowledged that I was not supposed to have an empty nest.  No one seemed to realize that fear for Gracen’s safety, a premature empty nest and an utter lack of purpose might be frightening and emotionally overwhelming.  Then again, maybe people did understand but felt ill-equipped to address it so avoidance was deemed the most comfortable solution for everyone; myself included.  Unfortunately, avoidance left me feeling alone, stranded in my grief, disappointment and fear.  It also left me feeling as if Katie was unimportant in the eyes of the world and as if my fears for Gracen’s safety were unreasonable in spite of the fact that I knew Gracen was at high risk for injury on campus.

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So, by the time graduation passed, I was a bit of a mess.  I began taking an anti-depressant early in 2015 and by June I was unquestioningly aware that I needed more help.  So an anti-anxiety medication was added to the mix and it made a significant difference.  I had not realized just how much anxiety I’d been living with until the miracle of modern pharmaceuticals provided some much needed chemical relief.

Still, I was weary, frightened and at loose ends so once Gracen settled into school and dorm life, I settled into my bed.  I found myself alone, overcome with the grief I had suppressed in Gracen’s presence, fighting to process it or push down to avoid the excruciating pain and rudderless. I also began sleeping later in the day which affected my medication schedule.  One day I realized that I couldn’t recall when I’d last taken my prescriptions.  Knowing I had an upcoming appointment with my PCP I decided to wait to see him so he could help me restart them safely.  Looking back, that was not a good decision.  A downward spiral took hold.

medication-tired

A typical day looked . . . okay, looks (present tense), because this is still a typical day in my world . . . something like this.  I wake up, get a cappuccino or chai latte, return to bed to read.  I read, write, browse Facebook and email and nap on and off throughout the day. David comes home, FOX news comes on and more often than not he makes dinner.  After dinner, I read, he watches Fox and plays on the computer and finally, lights out.  I toss and turn, mind whirling and when I can’t stand my thoughts and the inability to fall asleep any longer, I start reading again.

Unless I have an appointment with my grief counselor, my trauma counselor (for PTSD), or my PCP everyday is much like the day before.  I’m comfortable with that.  The silence and being alone is easier than being around people. People make me anxious – incredibly anxious.  How does one answer all the oh so simple questions without making others uncomfortable?  How do I answer them without feeling pitiful myself?  “What have you been up to?”, “Will you get a job?”, “Any new hobbies?” A simple, “I’ve missed you” leaves me paralyzed and frantically searching for an appropriate response.  “Me too” is what longs to escape but “Um, thank you” is generally what spills forth.  And as to the what have you been up to question, not much is my reply. No new hobbies, no plans for a part-time job.  The reasons for those brief responses go unspoken as the listener will either feel uncomfortable with my answer or will try to explain to me why a job or hobby would benefit me.  Regardless, a simple “no” is awkward enough as it doesn’t open the door for further conversation.

Is my current daily activity healthy?  Surprisingly, the answer is yes. . . and no.

All those churning thoughts and my writing are a means of working through my grief. The reading is also good for me.  I read suspense, mysteries, thrillers, and romance. They engage the mind.  If I was simply laying in bed, not working through my sorrow and not engaging my mind, that would be cause for concern.

Facebook and email allow me safe access to the outside world.

And the sleep; it’s good too.  I’m trying to take my PCPs advice and get some much needed rest.  He pointed out that should I fail to recharge spiritually, physically and emotionally, I will be running on empty when Gracen inevitably needs additional support. To say Gracen’s shift from walking to using a wheelchair was an enormous change is an understatement of vast proportions.  Wheelchair use involves a mirad of complications I had never considered.  Transfers into and out of the wheelchair, bathroom use with and without handicapped facilities, transporting the chair, finding safe and viable entrance and exit doors, dealing with weather – oh my, dealing with weather!, and a multitude of unforeseen considerations became the new norm.  No one can estimate the demands the next transition in her health will require.  Therefore, I need to be prepared, or be able to get up to speed quickly, in spite of the emotional impact those changes bring.

So I find myself withdrawing from the world around me, to rest, to grieve, to avoid assuming responsibility for making others comfortable with the realities of my life.  I don’t have the motivation or the energy to continue to push myself. Gracen was my motivation.  For her, I would, and still do, force myself forward, but in her absence . . . I lack the impetus to do much of anything.  I’ve struggled with the blues in the past, but never before have I found myself fitting the defined parameters of the clinically depressed.  Just hearing those words uttered by my grief counselor left me deeply ashamed and utterly humiliated.

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Why?  Why would a diagnosis of clinical depression leave me ashamed and humiliated?  I mean really, my counselors keep reiterating that I have suffered loss on a scale uncommon to the average individual, so depression is certainly not an uncommon or even an unexpected response.  I think I felt ashamed because depression is a mental illness and in our society a stigma is still attached to mental illness. Secondly, I had higher, albeit, unrealistic expectations for myself and for my faith.  Clinical depression represented, in my mind, both a personal failure to overcome and, far more painfully, a failure to avail myself of the power of God.  It stank of insufficient faith; not an insufficient God.

At some point along the way I drank the kool-aid and ascribed to the cultural expectation that I was capable of conquering every obstacle by sheer force of will and tenacity.  I should have realized, and in fact, from an intellectual perspective alone, I knew that was lie of epic proportions straight from the slithering serpent in garden of Eden.  That far too prevalent belief system is nothing more than the heart and mind’s rebellious desire to proclaim the soul god.  It’s the cunning and insidious whisper of the snake luring us into believing that with enough knowledge, with enough determination, with enough effort, we are in control.

347cd084-1316-4a6b-ae11-7351050ea284In truth, that idea is nothing but a craftily designed hologram. An idea without formative substance. It’s equivalent to the land of Oz and the impotent wizard hiding behind the castle doors and green drape.

How many times have you heard or used the analogy that if it walks like a duck and talks like a duck, it’s a duck?  Therefore, a Christian can easily conclude in the deeply buried regions of their heart and mind, that if they fail to conquer the human emotions grief generates, from guilt to fear, sadness to anger, and so forth, they are failing to walk by faith.  They are failing to apply the principles of their faith.  They are not the Christian they believed themselves to be and often worse, they have failed to live up to the perceptions and expectation of fellow Christians to inspire saints and sinners alike, to give God glory and praise in the midst of their despair and to minister to others.  In other words, God is not insufficient, their faith is insufficient.  They have failed God’s test of their faith.

But is that really true?  This duck analogy sounds good, but is it universally applicable? The truth is that in a paradoxical fashion, faith demands doubt.  The very essence of faith is to fall short of fact.  Jesus has always been the bridge that spans the gap between what we know to be fact and what we trust to be true.  When my faith, when your faith, falls short of expectation are we then dismal Christian failures?  I don’t think so.  We have simply lived up to the limits of our personal faith at that point of time – and lived up to the very essence of faith in general.

The longer I live the more aware I am of exactly how dependent I am upon the Lord God Almighty.  I am the instrument He forms at the potters wheel for His use.   I am made in His image but I was not, nor was any human, created with His perfect power and holiness. As a result, I am vulnerable to temptation and a failure to differentiate between truth and lies and good and evil on occasion.  And yes, I have fallen victim to Satan’s devices.  I’ve both allowed Satan to cunningly communicate a stark untruth about a simple diagnosis and to lead me to question God’s love and kindness by contemplating the idea that He may have withheld the desires of my heart in spite of the fact that I did my best to delight myself in Him.

What exactly does it mean to delight yourself in the Lord you might ask?   Gotquestions.org addressed that very question and their answer follows:

Psalm 37:4 says, “Take delight in the Lord, and he will give you the desires of your heart.” Taking delight in the Lord means that our hearts truly find peace and fulfillment in Him. If we truly find satisfaction and worth in Christ, Scripture says He will give us the longings of our hearts. Does that mean, if we go to church every Sunday, God will give us a new Rolls Royce? No. The idea behind this verse and others like it is that, when we truly rejoice or “delight” in the eternal things of God, our desires will begin to parallel His and we will never go unfulfilled. Matthew 6:33 says, “But seek first his kingdom and his righteousness, and all these things [the necessities of life] will be given to you as well.”

Did God withhold the desires of my heart?  No.  Children were my heart’s desire and I’ve been blessed with four.  I got to love and nurture each one for a finite amount of time.

Did God steal the desire of my heart from me?  The answer to that is no as well.  My children were on loan to me.  They were always His creation and David and I the chosen stewards.

Were they taken from us because we proved to be unworthy stewards?  I don’t believe that at all, in light of scripture.  God predetermined the number of my childrens’ days and in the case of my daughters he allowed man’s free will to intersect with Bethany and Katie’s number of days.  The Bible tells us that sin impacts all of creation and the cost of sin is death.  So be it accident or illness, intent or natural event, all death can ultimately be traced back to sin.

IMG_4284 (1)My grief recovery is complicated by the anticipation of more loss and the very real and reasonable fear of the destruction another loss will wreck within my heart.  Even grieving families that aren’t dealing with progressive disease often struggle with the anticipation and fear of more loss.  They’ve lost their naiveté – they know bad things can and will happen to them – not someone else – down the road.  But for most it is a vague Spector on the periphery of their minds.  For me it is a far more tangible presence and I must find a way to make peace with that and what it teaches me about the Lord.

Our family was living with progressive disease long before the collision that took Bethany and Katie’s lives. The difference between then and now is the loss of worldly hope.  There is a popular saying, “Where there is hope, there is life.”  I have lost the majority of my worldly hopes.  I know just saying that out loud will cause a great many people to reflexively remind me of all the worldly hopes that still lie before me.  What they don’t understand is that I no longer wish to have any worldly hope.  Worldly hope leads to expectations.  Expectations often lead to deferred hope and as we are told in Proverbs 13:12,  “Hope that is deferred afflicteth the soul: desire when it cometh is a tree of life.” – Douay-Rheims Bible.

I prefer to invest my expectation in eternal hope alone; that of eternal life with my savior and fellow saints, because that hope is the only one guaranteed to come to fruition.  I’m confident my hope of eternity will be fulfilled and not deferred.

However, I have yet to make peace with the role progressive disease will play in our lives, precisely because of all my prior losses.  It feels unfair.  It feels too much to ask of any one believer.  If this is what God’s love looks like, my more cynical perspective leads me to beg Him to share the love (with someone else)!  And yes, God can carry me through anything He allows to happen in my life, but before anyone reminds me of that truth (because I am well aware it’s true) put yourself in my shoes.  Google ARSACS (a rare form of Muscular Dystrophy) and read about what it does to an individual and then imagine walking that path with your child.  Imagine helping your child as their health declines.  Imagine standing by helpless to change it or improve their quality of life.  Imagine the things I’ve eluded to and left unspoken.  Making peace with God’s plans, with His will, with His sufficient grace is far harder when it’s personal, when you find yourself “feeling” as if His grace might not be quite be sufficient for you after all you have endured already.

PTSD-battle-PINI have reached the point of acknowledging that the best I may be able to hope for in regards to ARSACS, may consist of a cycle of repeated but temporary interludes of peace.

We live in a continuous grief cycle.  Gracen loses a previously mastered skill and we mourn and despair it’s loss and the daily ramifications that ripple out in waves from that loss. Eventually, we adapt to her new normal and settle into a wary peace until the cycle restarts with a new loss.  It’s just the way life works in our home.  Every time the cycle begins anew, we hurt.  Fear arises as does disappointment and sometimes even despair. I’m not sure if the Holy Spirit is actually doing a new work of trust and peace with each cycle or if each cycle simply forces me to acknowledge an as yet unconquered weakness (or doubt) in my faith.  Maybe I just keep spinning my wheels without making any forward progress.  Yet a person who is maturing rarely notices the subtle changes until enough growth has occurred and their pants are inch too short.  I imagine spiritual maturity is as subtle a process as manifest in physical maturity.  It’s only looking back far down the road that real progress is recognized.

Food-antidepressantToday, I am doing well to say without shame, my name is Janet Boxx.  I am clinically depressed.  I have anxiety issues.  I have PTSD.  I self medicate my anxiety with food.  (Ok, that I’m ashamed of – although I’m happy to report that while I may be a glutton, at least for now I’m not a suicidal, drug or alcohol addicted, glutton).  I lack the motivation to return phone calls, emails  and text messages; to clean my house, pay bills, shop for groceries, do laundry and sometimes even to shower.  It is what it is and my response to my life’s circumstances is not abnormal in the bereaved parents community, even two years down the road.

Having said all that; do not drop by unannounced!  I still have the capacity to feel great embarrassment and utter mortification.  Just because I’m comfortable in my current state of sloth doesn’t mean I’m equally comfortable having friends and family witness it.

Before speculation germinates, let me just say that David has demonstrated the utmost patience and support. He has taken on the tasks I normally do without complaint, anger or resentment.  He has a servants heart and demonstrates his love for Gracen and I in actions more than words.  He guards my privacy. David is better at compartmentalizing his grief than I am.  He has not, nor has ever, abandoned me to my grief and more importantly has never criticized or judged the way in which I am coping with the very same losses he, himself, is dealing with.  Our experiences with trauma are different because we were exposed to different things and took on different roles at the scene of the accident, at various hospitals, at home caring for Gracen during her recovery, with the medical community and the legal system and we simply deal with trauma differently.

This is what my life looks like when the Potter decides the pot He previously formed has served its intended purpose.  This is what my life looks like once I was fractured into minuscule pieces, returned to softened clay, and set to  spinning on the Potter’s wheel while He molds me into a new shape with a new or more complicated purpose in mind (after all, I am still a wife and mother).

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And you know what?  As ugly as this lump of clay currently is, as uncomfortable as it is for me to find myself in this state, it’s okay to be a lump of clay in the Creator’s hands. There is no safer place to be and while others, myself included, may worry about who and what I’m becoming, I’m confident God is not.  He sees beyond the here and now – past the dark tunnel I’m traveling through – clear to an eternal future where He will literally light my world.

 
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Posted by on January 29, 2016 in Adversity, Faith, Grief, Muscular Dystrophy

 

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