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Author Archives: Janet Boxx

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About Janet Boxx

My name is Janet Boxx. I earned a Bachelor's of Science degree from Northwest Missouri State University before working at Mark Twain Bank and then Sprint. Following the birth of my fourth child, I left the business world to focus my attention on raising my family. In my lifetime, I've been inducted into two communities no one wishes to gain membership in; the special needs community and the bereaved parents society. I'm a wife, a mother and a follower of Jesus Christ. Like many of you, my life has not been a walk in the park. It's been challenging in a number of ways and has caused me to examine my beliefs, almost everything I thought I knew about God, with what His word actually says about Him. I'm comfortable with my struggle, but well, I'm afraid that other believers may not be comfortable with my confrontational approach as I question and search for understanding. I am in desperate need of real answers, real truth, and am a big believer in authenticity. Therefore, I'm not known to "drink the kool-aid" so to speak. I hate platitudes and simplistic answers to complicated issues. I believe the Bible is the inspired, infallible word of God, and that every word is "profitable for teaching, for reproof, for correction, for training in righteousness" just as 2 Timothy 3:16 proclaims. Heaven knows I don't always get it right, and at times I concede that I cannot find an answer, and choose to trust that the Holy Spirit will reveal it in time or that He will enable me to find peace in spite of my questions. As a result, I'm open to others questioning my conclusions, I just ask that they aren't worded as an attack but instead by pointing me to another scripture and asking me to consider it in light of the conclusions I've drawn. A little background may help you understand my blog posts, so here is my life in a nutshell. I married my husband, David, in 1987. Our son, Cole, was stillborn on Father's Day, June 21, 1992. We went on to have three beautiful daughters. Bethany was born in November of 1993, Gracen in December of 1995, and Katie arrived in October of 1997. We noticed some developmental concerns when Gracen was about a year of age. Katie developed similar issues around her first birthday as well. Their physical issues were minor and the pediatrician was not concerned. But as Gracen and Katie grew, the physical issues became more pronounced, affecting both their fine and gross motor functions which impacted daily life and learning. Fifteen years and multiple and doctors and tests later, in the spring of 2012, we finally received a diagnosis. Gracen and Katie had been born with a rare form of Muscular Dystrophy. ARSACS is a progressive neuromuscular disease. The prognosis was not pretty and we were devastated. I had so hoped a diagnosis would lead to a cure - a medication or treatment that would give the girls a normal life. During that fifteen year time span, Gracen also developed chronic daily migraine headaches. Life was challenging to say the least. The day after Christmas 2013, life got harder. As we returned home from celebrating Christmas with family, our van was involved in a three-vehicle collision. Bethany and Katie died that afternoon. My first blog post was written a few months later, in March of 2014. I've edited that post in order to correct minor details that I was unaware of when it was originally written and posted on Facebook. Otherwise, it remains as it was. My hope is that my posts will serve to validate the feelings of others who are struggling with difficult circumstances and trying to assimilate their feelings and beliefs, as they too, try to hold on, get through, and avoid bitterness. So welcome to our world. Join me as I continue to live life in the Refiner's fire. In and out I go as God allows the dross to rise and be swept away until He can see His reflection as He looks upon me. Please share your thoughts (speaking the truth in love) and let iron sharpen iron as we banter back and forth as we each struggle our way through this life until God calls us home. Janet

The Wrecking Ball of Grace

The Wrecking Ball of Grace

I hope one day, I will be able to minister grace to those I’ve hurt as I’ve licked my own wounds. I know it’s true that hurting people hurt others. I take no pleasure in the wounds I’ve inflicted in the search for understanding and validation as the waves of grief have flowed over me.

(Clink on the link highlighted in red below to read the article in its entirety.)  

Melanie's avatarthelifeididntchoose

In the aftermath of loss, relationships suffer.

Sometimes it’s because of harsh words exchanged in the heat of emotional moments.

Sometimes it’s due to disagreements about how to deal with ongoing issues.  Often, it’s because most people just don’t know what to say and don’t know what to do in the presence of great pain and suffering.

Days and weeks and months pass and one day we wake up and realize that a previously close relationship is now distant and strained.

I know that in my grief I have felt abandoned by people I felt sure would stand with me, would never leave me, would be my most stalwart encouragers.

And I know, too, that I have shut some people out.  Some were too chipper or too quick to offer platitudes and others just seemed intolerant of my ongoing pain and sorrow.

Walls have been erected.

My heart sectioned off…

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Posted by on July 16, 2016 in Faith, Grief, Links

 

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Neurosis

borderline-personality-disorderIt’s 11:40 a.m.

Gracen has not yet made her daily morning call signaling her desire for help from her bed. She’s been routinely waking up around 9:30 this summer. I try not to worry, not to be paranoid; but it’s been like this since Cole died. I refuse to be ruled by fear—fear that I will find her “sleeping”—in the biblical sense. (1 Thessalonians 4:13)

A prayer, a plea, escapes my mental captivity. (2 Corinthians 10:5) I quickly turn my mind to something else – anything else that will hold off the anxious thoughts, the mental images of what I might find should I open her door. I’ll give her till noon to call. She might have stayed up late reading. Twenty minutes of distraction to avoid feeding my fears; acting on my paranoia.

I distinctly remember having a conversation with my friend and colleague, Judy, when Bethany was just a baby. I don’t remember the conversation word for word but I recall the gist of it. I’d asked her what the point was in entering Bethany’s room to see if she was still breathing in her crib. What could I do at that point? Judy responded that I could administer CPR, that it might not be too late. A wise response.

I think, even then, though, that I had begun to expect the worst. That I was resigned to the things I could not change. And that mentality carries forward to this day. Experience has done nothing but reinforce it.

I can just imagine the response of the choose joy contingent. I must have hope, I must think positively. . . It’s been 2 1/2 years, why can’t you get over this? (Or maybe that’s my own conscious condemning me). I’ve been infected with the cultural message that if I just do this or that I can get beyond this. But as I discussed in my recent post, Trust, Works & Supernatural Power, my analytical mind also realizes that I need the Holy Spirit’s intervention in order to heal. Maybe I can overcome without His help, but honestly refusing to work through my pain won’t lead to healing. And in the long run it’s more hurtful than helpful.

So why would I share my personal neurosis with all of you? What is my motivation?, I ask myself. Am I just seeking pity?

Oh, heck no!

There’s a small but hurting population of loss parents out there who grapple daily with fears for their surviving children, for their spouse. Individuals for whom an unanswered text or phone call or a late arrival without explanation incites anxiety far greater than the average person would experience.

For those men and women, a post like this validates their own fears. I can’t begin to tell you the enormous relief a loss parent experiences when someone says, “I feel that way too” because it doesn’t happen very often. More often than not, their very real fears are dismissed. No one wants to believe that it could happen again. That God would be so cruel as to allow you to lose another child. But every loss parent knows it could happen and David and I are living proof. That’s not to say that God is cruel, but that line of thinking is an all too common belief, even among Christians.

So yes, I want to validate the feelings of every loss parent I encounter.

Validation leads to healing.

And for those of you who haven’t experienced such a devastating loss, maybe this post will give you a glimpse into the mentality of a loss parent. Maybe you will not be so quick to jump in and remind a brokenhearted parent that they must have hope or shouldn’t think the way they do. Maybe instead you will gift them with understanding. Maybe the words that will tumble out of your mouth will be, “I can certainly understand your fears” or even, “I think I’d feel the same way.” Maybe you will be wise enough to stop right there; to fight back the urge to tack on, “But, . . . “, because pretty much anything that follows that word, but, will invalidate and dismiss any understanding the bereaved might have derived. Tacking on that one word, but, is a bait and switch. What appears to be understanding and compassion, is revealed to be admonishment and rebuke; criticism and judgment. It’s cruel yet offered with the kindest of intentions. It reflects ignorance or an unwillingness to imagine how those words might feel if you stood in the shoes of the bereaved.

Grief is all about feelings.

Processing feelings.

Grief is not an intellectual pursuit.

C.S. Lewis said in his book, A Grief Observed, “Feelings, and feelings, and feelings. Let me try thinking instead.” “Do I hope that if feeling disguises itself as thought I shall feel less?” He went on to say, “Aren’t all these notes the senseless writings of a man who won’t accept the fact that there is nothing we can do with suffering except to suffer it?” And then, “No one ever told me that grief felt so like fear.”

What are you most afraid of? How do you feel when someone implies your fears are unmerited or little more than paranoia?

Never forget that you have the luxury of walking away—whether you feel your words were a helpful encouragement or woefully inadequate. You. Walk. Away.

The bereaved do not.

There is no escape but there are moments of relief.  Moments when the burden is lifted as a friend or even a stranger yokes up with the wounded and hurting by sharing and validating their feelings—strengthening the bereaved for the moment when the burden once again settles onto their shoulders alone.

11:49 a.m.

My cell phone rings.

The display reads, Sugar Shaker Boxx, and sweet relief surges through me followed quickly by a bit of dread. I rise, bracing myself for the sight of the wheelchair that stands sentinel beside Gracen’s bed. Bracing myself for the tasks no mother ever wants to accept their grown child needs help with.

I put on a smile and adapt a sedately cheerful persona (Gracen is not a morning person) and I open her bedroom door.

Another day has begun.

 
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Posted by on July 14, 2016 in Grief

 

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My Mother is Gone, But Her Edits Remain | Literary Hub

It’s been a great number of years since my paternal grandmother passed away.  I was still in high school at the time.  A few short years after that, I was visiting my grandfather’s home and there on a small coffee table sat my grandmother’s Bible.  I remember opening it up and noting the great number of verses she had underlined within.

Even in my late teens I recognized the value of that Bible. Not monetary value, mind you, but personal value. My Grandmother loved the Lord Jesus Christ. Her Bible, the notations she made and the things she underlined were a clear reflection of her heart. They denoted spiritual lessons learned. They clearly indicated what she found important. They defined her. They defined her far more than the material treasures she had acquired over her lifetime.

I had hoped that one day that Bible would be mine. That maybe, I could learn from the lessons she learned. My own Bible is filled with my notations and copious amounts of underlined verses. I hope, one day, my Bible will be deemed a valuable treasure by someone else. Someone who maybe needs to hang on to the very essence of who I was at my very core. And I hope they will come to a deep understanding and love for the Father who created me as a result. That’s a worthwhile legacy.

I hope you enjoy this article written by Blair Hurley.

It’s been three years now since my mother’s death, and I’m still wondering why I haven’t spoken with her in so long. There’s a feeling of unreality about the whole thing; it’s hard to believe that …

(Clink on the link highlighted in red below to read the complete article.)  

Source: My Mother is Gone, But Her Edits Remain | Literary Hub

 
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Posted by on July 12, 2016 in Grief, Links

 

Trust, Works & Supernatural Power

Trust with blue marker

I came across a bit of dialog in some fiction I was reading recently. Within that dialog was a nugget — a small, small thought that struck a chord within. The male character was imploring the female character not to worry, but to please trust him instead. The author revealed the female’s thoughts more than a reply. The female’s internal response was that she could do that — trust him — for the time being, but also acknowledged that the time was coming when they would have to have a serious discussion about this issue in their relationship. The issue was the effect the male character’s abusive father played in their interaction as a couple.

The woman was afraid to blindly trust that the man had overcome the far reaching impact of abuse at the hands of his father; one of the two people every individual should be able to trust for unconditional and sacrificial love.

ca777683f74be57ee1436a610eb174a9The author communicated that the woman needed more than the male character’s word that he was trustworthy — she needed more information to feel comfortable that the emotional wounds inflicted by the abusive father would not result in destructive, self-protective responses when their own relationship hit difficult challenges. In fact, the entire story was built around the fact that the male character had run and shut the female character out, at an earlier point in their relationship.

Personal, painful experience had taught the female character to be wary. She desperately wanted to trust, but experience had taught her a painful lesson and her own self-protective instincts were screaming that as hard as the male character was trying, trust damaged is not easily, and without evidence of change or misunderstanding, rebuilt. Fear and the instinct for self-preservation demanded more than unchallenged trust. She needed to know her trust was merited.

And this is that small nugget — the thought that struck a chord within as I read this work of fiction: This need for more evidence in the aftermath of deep wounds is not only normal but wise. Isn’t that what you, as a parent, would advise your child to do — Trust but verify? Is it then so hard to comprehend that the broken believer needs the same thing from God? Is it sinful? Personally, I don’t think so.

Eventually every Christian hears these words, “Don’t worry, trust God.” There’s absolutely nothing wrong with that advice, unless it is offered to someone who perceives themselves to be betrayed or abandoned by the God they are being encouraged to trust. 08e8f8fff3f9e983cb822826a9feef30If that’s the case, the wounded Christian may very well be thinking, “Stop asking me to trust God while I’m still coughing up water from the last time He let me drowned!” Is it any wonder then that such advice is met with cynicism, anger, extreme frustration, ridicule or even abject terror? This biblical admonition heaps guilt and shame upon the struggling and broken believer.

The well-known phrase, Fool me once, shame on you. Fool me twice, shame on me!, comes to mind here doesn’t it? Self-preservation demands more than biblical platitudes. And lest that statement offends let me clarify before continuing. A platitude is defined as a trite phrase spoken as if it were profound or fresh. Synonyms for the word platitude include trite and cliché. The common theme in definition among all three of these words is the idea that a phrase has become commonplace and lost it’s effectiveness due to overuse. Can a Bible verse become cliché? Trite? A platitude? I think the answer is yes.

Oh, I can just imagine the hackles rising here, but please bear with me!  Maybe the definition of those three words above should be expanded to include misuse as well as overuse. From my personal perspective, advice becomes trite when it is offered in a flip manner, without adequate thought or as a quick and easy fix to a complicated problem. And honestly, I am smart enough to realize that just because a verse has been overused or misused doesn’t make it any less true.

The real problem — what makes Bible verses about trust (in this case) into platitudes — is the failure to acknowledge that from the believer’s perspective, trust has either not been adequately established or for the more mature believer, trust is perceived as having been breached.  Therefore, the admonition to trust God is both perceived as a criticism and an oversimplification.

Trust is developed over time. It’s the result of positive reinforcement — and damaged when it is betrayed or extended to someone prematurely or foolishly. I think, when a child is well cared for by its parents, trust is developed and the young mind assumes everyone is trustworthy. Life experience soon teaches the child that that assumption is invalid. Trust is eroded and less easily extended as we get hurt in big and small ways.

trust-God-01Yet the Christian faith appears to demand unconditional trust in the Savior we believe in but cannot see; cannot touch. It appears to demand that in the face of evidence to the contrary we hold fast to scriptures that seem to communicate the opposite of what life experience teaches us.

That word, appears, is really the key, don’t you think? Appearances are deceptive. Our culture is so driven by positive thinking that we gloss over the difficulties the Bible tells us will surely befall us and rush to the tail end of the verses that promise a positive outcome.

When we read Isaiah 40:31, ” . . . they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”, we focus on the positive outcome of waiting upon the Lord. But I fear that we fail to recognize what this verse implies as we desperately cling to its promises. What this verse implies, but doesn’t explicitly say, is that the believer will find themselves weak and weary. Our strength need not be renewed if it is never weakened. Yet somehow, we interpret this verse to mean that we will never feel weak and weary, only that we will triumphantly mount up with wings as eagles! Then when we find ourselves weak and weary we wonder why or believe that we have somehow failed to live out our faith.

Likewise, Isaiah 43:2 says, “When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you.” When we read this verse we gloss over the fact that we will pass through the waters, through the rivers (fast moving current), through the fires. We overlook or maybe refuse to consider what it will feel like as we enter the waters and feel it quickly rising, threatening to overflow us and forcefully dragging us downstream. We fail to anticipate how it will feel when we feel the heat of the flames, smell singed hair and choke on the heavy smoke that surrounds us as we walk through the fire.

Instead we focus on the promise that God will be with us, that the waters will not drown us and the fires won’t burn us. It’s all stated without emotion as if fear, pain, discouragement and a multitude of other emotions won’t batter us in the midst of the flood waters and fiery flames of life circumstances. But the scriptures don’t promise that — they just promise God’s presence and protection from complete devastation as we go through those harrowing experiences. Ask the near drowning victim. Ask the individual who barely escaped without injury when a fire broke out in their home. Consider the Christian martyr; consider Paul who was whipped five times (39 lashes on each occasion), beaten with rods three times, stoned once, shipwrecked three times and spent 24 hours on the open seas (2 Corinthians 11:24-25) and imprisoned at least once. Were they unafraid in spite of the constant presence of the Holy Spirit? Doubtful, highly doubtful! More likely they were still terrified.

The Bible tells us to reason together with the Lord (Isaiah 1:18). To taste and see that He is good (Psalm 34:8). To try the Lord (Malachi 3:10), at least in regards to tithes and offerings. It doesn’t demand unconditional or unchallenged trust. God, by grace, gives us enough evidence to take that step of faith. *For further clarification on trying the Lord please read the notes at the end of this article.

trust-building-big-sizeWhen faced with a believer who is grappling with difficult circumstances, who is afraid or discouraged, I, like every other Christian I know, struggle with how to respond – how to support and encourage. We want to fix the problem and when we are helpless to effect change we point them to the only One capable of pulling them through. We encourage them to trust God. But I wonder if that is the very last thing the hurting believer needs to hear. They, like the female character in the novel I mentioned above, need something more; more than unchallenged trust. The trust they had has been shaken by circumstances. They need more information; more knowledge and evidence to boost their confidence that their faith is grounded on a firm foundation and not built upon shifting sand.

I wonder if what the broken believer really needs to hear from fellow Christians is:

  • A promise that prayers for either assurance or the restoration of their battered hope and trust in Christ will be lifted to the throne of grace.
  • I wonder if maybe that struggling believer needs an acknowledgment that trusting God in their circumstances is not simply a matter of the will.
  • That fledgling faith and perceived betrayal or abandonment results in shaky trust.
  • That supernatural help is required to trust God more fully.
  • That the believer’s need for more evidence that God is trustworthy is expected, entirely normal, and is no easy or simplistic feat.

And let’s be real here. The body of Christ is not strengthened when we refuse to acknowledge our doubts about God.

God is not afraid He will be found lacking. He’s completely confident that as we test our faith, as we reason together with Him, as we search to determine if He is good like He claims, we will discover He is all He proclaims Himself to be.

Life has taught me to expect disappointment, pain and suffering. It’s unrealistic to expect that I can simply ignore the lessons of days gone by and trust that God will not allow me to be hurt further. I need time to reexamine the evidence presented in the Word of God. I don’t think He is the least bit offended by that. And this is what I’ve discovered:

  • What I need from God is the supernatural ability to rise above the pain and fear; not to believe in vain that more pain and sorrow will not befall me.
  • That I don’t need encouraged to trust God more – I need to comprehend and make peace with what I can and cannot trust Him for.
  • And I need supernatural help to find the peace that passes all understanding so that I can endure what lies before me without discouragement and despair — undefeated by circumstances and Satan’s mechanizations.

I think grace believing Christians still get tripped up in works related theology. I know I do. We think we are responsible for our spiritual growth. That if we just do the right things (practice the spiritual disciplines – Bible reading and prayer), acquire the  right mindset (taking every thought captive, thinking on things that are pure and just, choosing joy) that we will overcome. And we are frustrated when we find that approach unsuccessful for ourselves and others. Intellectually we know we are dependent upon God to change us, but Satan’s deceptions woven into culturally ingrained messages have insidiously crept between the gaps in biblical knowledge within our hearts and minds. Truth has been perverted. Our beliefs have been infected with half-truths. And as a result . . .

We believe walking the walk equates to spiritual transformation.

We believe if we follow the prescribed formula, we will be successful at overcoming our problems. But that idea when boiled down . . .

Denies the very work and power of God in the lives of Christians!

That formulaic philosophy is grounded in works not faith. It disguises the truth that while we ascribe our spiritual well being to God we subconsciously restrict His participation as we try to solve our own problems; as we try to heal or improve ourselves.

Don’t get me wrong, there is great value in practicing the disciplines of the faith, however, those practices are the means by which we cooperate with the Holy Spirit in spiritual growth and maturity but they are not, in and of themselves, responsible for spiritual growth. Here is the truth . . .

  • We cannot grow spiritually without supernatural intervention.
  • Spiritual growth requires the work of the Spirit.
  • Only the Holy Spirit can bridge the gap between our humanity and holiness in a process known as sanctification.

I don’t need encouragement to find a way to make myself do the impossible (heal myself).

I need prayer that God will do the impossible within me.

IMG_1212I need fellow believers to recognize and acknowledge that healing will not come solely from activity on my part.

I need believers to tell me that they are praying for God to step in and do what I can’t do for myself, what no man, regardless of how strong willed they are, can do for themselves.

And frankly, I need Christians to verbalize (well, after I’m confident that they actually believe this) that unfinished healing isn’t representative of a failure on my part to cooperate with the Holy Spirit. Instead it means the Holy Spirit is still at work in my heart.

I wonder if those who read this blog think I might harp too much on the ill effects of the culturally popular positive thinking philosophy. But as my grief counselor pointed out to me Tuesday, the command to think upon things that are true and just, etc., is not at all a command to think positively or to dwell on only good things (which is exactly how I’d interpreted it). What’s true and just may not necessarily be good or positive. 

I find myself at war within — cognizant that I am waiting on the Lord to do His work within my heart as I cooperate in those efforts, but simultaneously self-condemning — believing the cultural messages I’ve been raised with — that are ingrained within. The messages that say I can pull myself up by my bootstraps, that if I just apply myself I will succeed, that choosing joy eliminates sorrow. And while there may be a kernel of truth hidden within each of those messages, the success they promise is all predicated upon my works, not the power of God!

bible-idolChristians reduce the Word of God to a mere idol when we attribute spiritual growth to following biblical precepts while excluding the God who empowers that Word from the process.

Is that what I do? Is that what the Christian community of our generation does? Do we serve God ritualistically without humbling ourselves to acknowledge our desperate need of His personal intervention in our lives? Do we subconsciously deny or rebel against the power of God in our lives? Are we modern day Pharisees?

“These people come near to me with their mouth
and honor me with their lips,
but their hearts are far from me.
Their worship of me
is based on merely human rules they have been taught.”

 ~ Isaiah 29:13

I can’t effect true and real transformation in my life by the practice of spiritual disciplines in the absence of the supernatural work of the Holy Spirit. At best, I can create an elaborate facade that gives the appearance of transformation. There are things only the Holy Spirit can do. He, alone, is capable of transforming my life, thereby, increasing my trust in Him.

I wonder how I would have felt — what difference it might have made — if just one person had said to me, “Janet, you are going to have to trust God for Gracen’s health and future. But know this: spiritually mature trust is impossible without the work of the Holy Spirit in your life. Practice the spiritual disciplines to the best of your ability, but don’t beat yourself up when you find yourself afraid for the future, when you realize that you can’t force yourself to trust God by an act of your will alone. Understand supernatural intervention is required and it doesn’t happen overnight or even quickly.”

What would words such as those do for a broken or struggling believer?

What would they do for you?

 


 *Notes on Trying the Lord

There is a fine line between trying the Lord, as in searching the scriptures to see what He says about Himself and trying the Lord by demanding that He prove to us He is worthy of our trust.

Got Questions?.org has a great article that discusses the distinctions between the two. And while the article says of Malachi 3:10 “This is the only situation given in the Bible in which God tells His people to “test” Him.” It later concludes that “The Israelites at Massah tested God because they lacked faith in Him. The Israelites in Malachi’s day were invited to test God because they had faith in Him.” (To read the article in its entirety, click on the following link:  What Does it Mean to Test God?).

I am in no way advocating tempting the Lord. As a believer and disciple of Christ Jesus, I am coming to God from a position of faith. There’s an important distinction that must be drawn between coming to God doubting his power and character and coming to Him fully confident of his power and character yet confused because He didn’t behave as we expected. Are we not then trying our faith as opposed to testing God? (James 1:2-3)

 
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Posted by on July 9, 2016 in Faith

 

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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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Michaela Evanow  – An Honest Look at Prayer and Faith After Child Loss

I cannot pray. I don’t know how. It’s not that I don’t want to, but words fail me. They come out muffled and fake. They are stale and regurgitated from the days of my youth. I want to remember how …

(Clink on the link highlighted in red below to read the complete article.)  

Source: an honest look at prayer and faith after child loss.

 
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Posted by on July 5, 2016 in Faith, Grief, Links

 

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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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What If?

A godly grieving father’s perspective. . . Meet Ron Duncan.

My husband wrote this earlier this last night. He said, “I’m not there yet, but I am walking towards this.”  God is working in our lives to conform us to the image of Christ.…

(Clink on the link highlighted in red below to read the full article.)  

Source: What If?

 
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Posted by on June 28, 2016 in Faith, Grief, Links

 

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Silence Doesn’t Serve Anyone Well

Silence Doesn’t Serve Anyone Well

Melanie's avatarthelifeididntchoose

One of the reasons I write is to share my grief experience with others.

I realized when tossed into the ocean of sorrow that of all the things I had heard about or read about, surviving child loss was never mentioned.  

Oh, someone might comment that so-and-so had LOST a child, but then the conversation quickly moved on to more comfortable topics.

But if we don’t talk about it, we can’t learn to live through it.

Silence doesn’t serve anyone well.

I agree with Mr. Rogers:

Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.”
― Fred Rogers

spotlight3

During the course of my lifetime I have seen many topics dragged from…

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Posted by on June 24, 2016 in Faith, Grief

 

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Birthday Reflections – Guilt & Shame

il_570xN.838650199_lubbToday is my one and only son’s birthday. If you read my Father’s Day post you know that he was, in the terminology of the latest trend, born still—a cord death. Cole did not die on the day of his birth. I always knew that. David and I were drawn to the hospital because I quit feeling him move. But even I didn’t know when he actually died.

I’m not sure how long it was after his death that I discovered exactly when it happened; but it was an innocent comment made by my mother that truly rocked my world.

She was in my home and all she said was, “I remember you telling me that the baby was moving really funny.” Those words triggered that movie-like effect, you know the one where past events scroll by the screen at warp speed as a replay begins of that exact moment in the character’s past. With her words I was instantly transported back . . . There I stood in my parent’s living room in front of their green velvet love seat. It was about 5:30 p.m. on Thursday, June 18th. I can see it in my mind’s eye looking on as if I was standing mere feet away from my extremely pregnant self.

I’d driven to their home after work in order to bring my mom some fabric which she was going to sew into a balloon shade for the baby room David and I had set up in our home. It was a simple blue and white pinstripe and matched the Paddington Bear pattern of the bedding we’d chosen. And then I said it, “Mom, the baby’s moving really funny.” It echoes through my mind even 24 years later. My mother replied, “Why don’t you lay down and maybe it will stop in a moment.” Cringe worthy advice looking back, for indeed the strange movements I felt did stop shortly thereafter. And only in hindsight, only when my Mother spoke those innocent words after my child was long buried, did I realize their significance. “I remember you saying . . . ”

Unbeknownst to my Mother, she filled in the blanks and devastated me all with one simple sentence. For it was at that very moment, now standing in my own living room, that I realized that I not only knew exactly when my child died but that I did nothing—NOTHING!—NOT ONE THING!—to save him. It was also in that instant that I could finally find words to describe the strange way my son was moving within my womb. Thrashing is the only word that accurately describes those strange, previously indescribable movements.

FullSizeRender (15)I knew with certainty then that I felt my child dying. The cord that was wrapped once around his arm and twice around his throat tightened suffocating him as he thrashed, fighting for his life. That devastating moment began the completely irrational guilt and shame cycle I struggled to overcome for years in spite of knowing full-well that had I understood what was happening, I would not have been able to save him. There was no way to get to the hospital, to have my son delivered, before his death. No possible way.

Guilt and shame are all too common experiences in the parent loss community. Far too common. We kick ourselves for what we perceive as poor choices even as logic firmly unravels that notion. Rarely is there an earthly way of knowing what is to come. The lack of foreknowledge renders us incapable of intervening in the unacceptable destiny about to play out in our children’s lives. Logic is trumped by emotion and mental anguish. So, we beat ourselves up and ask, “What kind of mother or father am I?” And the only possible answer is, of course, “A bad one.”

We need someone to blame, someone to be held accountable, and for many broken believers, the heart simply cannot handle the thought that our child’s death may have been part of God’s plan*—let alone His will. It is easier to blame ourselves than to rock the very foundations upon which our belief in a loving God resides. Not that we are any more capable of preventing that either. When a large part of your world is destroyed the impact is insidious as wave upon wave of grief batters the broken heart.

Just as few people knew that I felt my son strangle to death within the ironically protective environment of my womb, few people realize that we debated the trip to Kansas City for Christmas the year my oldest and youngest daughters died.

Bethany, my oldest daughter, had so much going on in the days prior to her death. Tons of angst over school and changes in living arrangements she wanted to make, finances, and Alex, her boyfriend’s uncertain return to UCA.  Her life was in complete turmoil and I was helpless to make it better for her. It seemed what might be best for Bethany would be for us to stay home in Bentonville that Christmas. However, that was not what was best for the rest of the family, nor for O’rane (the international student spending the holiday with us). Still, I took her aside a day or two before we left for Kansas City and asked her if she would prefer to stay home. I would have chosen to remain in NW Arkansas if that would have made her more comfortable. No one else would have been too keen on that plan, but I had every intention of honoring her wishes had she indicated that she would prefer to stay home.

What I wouldn’t give to have stayed home for Christmas!

I’m considerably older and a bit wiser than I was 24 years ago, but those old demons of guilt and shame have still plagued my days in the aftermath of Bethany & Katie’s deaths. Despite that fact that I had no power whatsoever to prevent any of the tragic circumstances of my life, the broken heart is laid bare and vulnerable to the fiery arrows Satan takes such delight in unloading upon the hurting and weak.

Maybe just revealing that truth will help another broken-hearted parent caught in the guilt and shame cycle put to rest the irrational personal judgments they have leveled against themselves or a spouse. Maybe it will enable them to see that what the scriptures say is true—that Satan is a thief and a liar bent on our destruction and there is no limit to the devices he will employ to do just that.

Maybe the disclosure of my illogical feelings will enable another parent to make peace with the equally truthful scriptural revelation that our days are numbered prior to our birth. It was never in our power to extend the lives of our children, regardless of the circumstances of their death. There are simply things in this life that are pre-ordained and while that can be a devastating truth it can also be a great comfort, because the vast majority of parents have consistently acted in their children’s best interest. And with grace for those whose actions bring godly conviction (i.e., guilt) there is repentance, forgiveness, restoration and reconciliation through faith in Christ Jesus.

The road is long and dark—but grief embraced and worked through—can result in health and healing.

Oh, you never forget. And there never comes a day when the death of your child is justified by spiritual growth or ministry. Those things are just the result of God taking bad things and performing a work of redemption. He doesn’t transform bad events by redefining them and calling them good. No, God brings good from Satan’s evil actions and intentions. And He doesn’t justify Satan’s evil actions and intentions either. That’s a fine distinction, but an extremely important one nonetheless. All things work together for good, not all things are transformed into good.

So while this day is filled with bitter longing and remembrance it is also a day in which I know I can trust that this is not the end of the story. Kenny Chesney’s song, “Who You’d Be Today” is reflective of that intense longing and bitter disappointment I feel. (Click on the link to hear the song). But it also reminds me that one day I will know who each of my children really are because I will see them again. I will know them and they will know me, in perfection, the way we were created to be before the fall of man. We will be like Him—the One who sacrificed His life and endured for the joy set before Him.

“Who You’d Be Today” by Kenny Chesney

Also included below are the lyrics to “Held” by Natalie Grant which serve to remind me that there are things God did not promise me—but that He has promised to hold me through all the bitterness this life brings. Can I not wait, for one hour (albeit a very long hour), watching for my Savior? Partial lyrics can be found beneath the youtube link.

“Held” by Natalie Grant

IMG_1111“This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held

If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior”

———————–

*Please allow me back up a bit here. God’s plans and His will are sensitive subjects. I’m not confident that I completely understand them but I am confident of a few things.

1. God’s plans for us are redemptive and good.

2. His will for us is that we be saved and conformed into the image of Christ.

There is a huge difference between God’s will & plans for us and foreknowledge. He knows what is coming. He’s gone before the believer.

Additionally, God cannot intervene and prevent every negative circumstance in our lives and maintain His commitment to granting humans free will.

As believers we need to be aware that God’s plans for us include a strategy for redemption based upon His foreknowledge of the events that will impact our lives.

We also need to recognize that God is not the author of all the negative circumstances in our lives. We have an enemy. His name is Satan; and he’s more than happy to allow God to be blamed for his actions.

 
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Posted by on June 21, 2016 in Grief, Music

 

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