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Thirty Minutes

hourglassI had a biopsy Tuesday. I was a bit surprised when the doctor told me that I had handled the news that the biopsy was necessary in an appropriate manner – in other words – he was glad I didn’t freak out. This is the fourth time I’ve had to have follow-up appointments when the initial tests revealed unexpected results ATA (after the accident).

I find that ATA I am no longer shocked or surprised by disconcerting news. I’ve just adopted a low-level of expectation mixed with a high-level of resignation.

The nurse told me prior to the procedure that they do a lot of these biopsies and that a cancer diagnosis is very rare. My tongue-in-cheek response was, “Please don’t use that word rare. I’ve found that if it’s rare it happens to me.” Stillbirth is rare. ARSACS is rare. Losing two children in a car accident, while not unusual, is also rather rare among the population.

The biopsy wasn’t as uncomfortable as I expected in spite of finding that the pre-procedure medication hadn’t quite done the job it was designed to do. An additional step was required, which the nurse assured me was NOT a rare occurrence. The three of us, the doctor, nurse and I actually found a host of things to laugh about throughout the process.

As I left the clinic Tuesday afternoon I found myself thinking, ‘This is the most normal I have felt ATA.’ It wasn’t that I escaped the awareness of Bethany and Katie’s deaths. Nor did I forget Gracen’s disease and her prognosis. Those things are simply deeply ingrained in my being. They are ever before me. They have shaped me in so many ways. They color my perception of everything I see, hear and experience.

I don’t really know what made the interaction with my doctor and nurse different than all the interaction I have had with others ATA. Maybe. . . hopefully. . .  it reflects that a measure of heart-healing has taken place. I am both hopeful and wary of finding out if that will prove to be true.

clocksIt was a period of time in which feeling good (in spite of the fact that I was having a biopsy and all that implies) didn’t feel bad – didn’t feel as if laughing or smiling or enjoying simple conversation diminished the inherent value of my daughters. There was no guilt – no shame – and believe me I found many a reason to feel both of those things!

It was thirty minutes, not of escape, but of the assurance that there could and maybe even would be more moments like this. Moments when each one of my children is a joyful part of me, not simply a bitter or wounded reminder that life is not what I hoped, expected or dreamed it would be.

I fear I’m not describing these moments well at all, but suffice it to say that it was the first time that I discovered that living another day might not be so bad. That I might eventually enjoy life again. Not the naive existence I walked before Cole was stillborn, before Gracen and Katie were diagnosed, before Bethany and Katie died, before Gracen survived even as her health continues to deteriorate. No, it was a glimpse of what might be possible in spite of all those other things.

For thirty minutes of my life Tuesday . . . I felt free.

I felt for the first time as if God just might have some good plan for me in the here and now; not just my eternal future. Believe me when I say that I have long known intellectually that God cares about my here and now as well as my eternity, but it’s the first time I actually felt as if that was true. Finding any single occurrence where my mind and my feelings agree is huge for me.

HUGE!

For two and a half long years I have struggled to find a way to make my mind and emotions agree . . . and I’ve failed miserably. I honestly don’t think it’s something I have any power over. I think that’s the Holy Spirit’s job, so I don’t believe I’m a failure. I do, however, think the Holy Spirit is meticulous and that takes time – more time than I have the patience for.

So for now . . . all I want to do is bask in the thirty minutes of freedom I experienced.

30-minutes-400x234-1_1Those thirty minutes were worth waking up Tuesday.

Worth getting showered and dressed.

Worth having a biopsy.

Those thirty minutes. . .

That feeling of freedom . . .

it’s priceless.

 
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Posted by on September 7, 2016 in Adversity, Faith, Grief, Muscular Dystrophy

 

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A Frank Conversation with the Father

 

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

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A Frank Conversation with the Father

Here’s the deal Lord, I have no idea how to navigate this existence I’ve been left with.  I don’t even want to navigate it — at all.  I know You are the answer and yet I’m terrified of You — of Your “good” plans for me (pardon the sarcasm).  I’m so broken and I wish more than anything that you had just let all of us die that terrible day.  I’m furious that you allowed that accident to happen, that every dream I’ve ever had has been either withheld from me or snatched from my feebly grasping hands.

nt-puzzle-perseverance-20091101-19-728I have no peace because my fear of You prevents me from drawing close. How can I trust You when You repeatedly allow me to be crushed?, and yet You sustain me.  I don’t get it.  I don’t know how to move forward, with or without You.  I need You but I’m afraid of You – afraid of how much what’s left of this life will hurt – afraid I can’t survive any more.  I’m teetering on the brink of insanity.  But for Gracen I’d just want to slip over the edge.

I desperately need Your help but am afraid to ask and so resistant to any future because I don’t want new dreams; I want my old dreams back.

I can’t let go of my fear and my resistance in my own power.  But I also can’t stomach any more of life as I currently know it.  This is the best I can offer in on my own.  Please do for me what I can’t do for myself.  Do what’s best for me because I’m just hurting myself.  Change me because I can’t change myself.  Help me to rest, or be still, or trust or whatever it is You want from me to move me past this purgatory in which I’m currently living.  I don’t think I can ask twice.

 



 

Helping the Bereaved Bear their Burdens

1.  Realize it is normal for those who mourn to question and struggle with scripture, long held beliefs, drawing close to, leaning on and trusting God.  Don’t get freaked out if you see this happening.

Genesis322.  Ask probing questions instead of correcting or rebuking especially with scripture.  The last thing the grieving need is to feel defensive or to carry the additional weight of fellow believer’s condemnation (which may translate in their minds to God’s condemnation). The believing bereaved need safe people who allow them the freedom to express fears, anger, and disillusionment with God and their faith — people who allow them to question and wrestle with scripture. Failing to provide that will lead them to withdraw or simply suppress their questions and fears.  The grief-stricken may completely turn their back on their faith (not lose their salvation, simply quit following Christ) or they might ignore their questions and carry on with their faith.  They may grow and mature in other areas but place a large “No Trespassing” sign on that area of the heart refusing to allow the Holy Spirit to heal those deep wounds. Unhealed wounds fester.  Allowing a believer to wrestle with their beliefs, to confront scripture, is not something to fear. It’s something to encourage.

3.  Ask God for wisdom and discernment for yourself and the bereaved.  Be cognizant of whether the grieving believer is asking you to help them understand or simply to hear them out.

131574.  If the grieving believer is struggling with a specific scripture and is seeking feedback, make sure they are viewing the passage in context. If you are concerned that they might be misinterpreting a scripture ask, “What else does the Bible say?”. Acknowledge when you yourself don’t understand.  If you aren’t fast on your feet, ask if you can think it over and get back to them — DO NOT fail to return a response! They need you to keep your word and are often desperate for an explanation. If it’s taking awhile to find an answer, email and let them know you are still mulling it over.  Always use the Bible, trusted commentaries, or trusted faith-based resources in a biblical discussion.  Don’t add to or take away from scripture.  For example, count it all joy doesn’t mean they should be happy their loved one died.  Christ wept with the bereaved, he didn’t tell them not to be sad or to find a new perspective, or to buck up and move forward.  Follow His example.

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Posted by on February 25, 2016 in Faith, Grief

 

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An inside look at Muscular Dystrophy. . .

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I too see and appreciate the tender mercies yet have not made peace with what might lie ahead as we live with ARSACS, a different form of Muscular Dystrophy than Mitchell’s family endured.

I am not simply grieving what has been lost already, but what is yet to come. Maybe, this video will help others to understand why I am so resistant to moving forward. I’m still coming to terms with the fact that everyday following December 26, 2013, has been and will be the best of times for our family, in spite of what physical skill may be surrendered to ARSACS on any given day.

Please, take a minute and watch this short video by clicking on the link below highlighted in red.

WHEN THE LIGHTS GO OUT, AS THEY SURELY WILL

So, I try to live in the present. Sometimes life demands that I look further down the road, and sometimes I’m unable to prevent my mind from floating forward to the new eventualities, but I desperately try to control my thoughts, to avoid “kicking at the pricks” as Christ informed Paul he was doing on the road to Damascus.

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Please try to understand that my hope lies in eternal things and avoid trying to help me have hope for things of this world. I’m not trying to be negative, I’m just grieving what’s been lost while simultaneously grieving what’s yet to come.  It’s known as Anticipatory Grief.

I know there are not a lot of people who have walked in my shoes and have no idea what it’s like to live in a continuous grief cycle and therefore, don’t have any concept of how I think. I know that experience is the most effective way to develop empathy but before you try to remind me of my blessings please imagine living with my everyday reality.

1908247_836591986370464_1217962212_nI didn’t lose a son and two daughters and begin picking up the pieces to move into a hopeful future. I live with the knowledge that I will always be picking up broken pieces and there is no way to repair the pieces that have been falling since MD entered our lives.

Happiness may be fleeting and driven by circumstances, but joy and happiness are not equivalent. Joy is the light of the Holy Spirit’s indwelling. Unless we are consciously trying to hide it, joy seeps to the surface. It’s intangible – a silent, more subtle and substantial quality than happiness which flaunts it’s presence in spontaneous and short-lived smiles, laughter and excitement. Joy lingers, in fact it resides, within even the most wounded heart because it is the fruit of the Spirit.

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Do not jump to the conclusion that families who cope with special needs, life-threatening or progressive disease live without joy and are unaware of their blessings. You might be surprised to hear them voice their deep gratitude over the smallest of accomplishments and simplest of kindnesses.

Living with great needs has a way of opening your eyes to the smallest of blessings, but it doesn’t anesthetize the painful realities of life. It’s like a downpour abating just long enough to load your daughter into the car and her wheelchair into the trunk. You are grateful, thrilled even, that you aren’t soaking wet even knowing you will still have to place the daughter of your heart back into that wheelchair when you arrive at your destination. You also know the rain might not abate when you arrive and you may still end up soaking wet. In spite of that you are still thankful that you stayed dry for the time being.

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I want others to understand that none of this is easy, there are no simple answers, and I will not always be able to tie up my messy life and emotions with a Biblical bow that makes everyone, myself included, feel better.

If you haven’t already; watch the video, read Mitchell’s father’s Facebook posts. You will find a godly man who, two plus years later continues to deal with sorrow. He’s also aware there will be more darkness to navigate down the road. He ties things up with a Biblical bow better than I do; so you will appreciate his lessons and feel comfortable hearing them too. He has much of worth to share.

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Conversations with Melanie – Part 1

Conversations with Melanie – Part 1

A fellow bereaved parent and blogger, Melanie, recently sent me the following question in regards to “Uncovering Unknown Issues of the Heart”, which I posted several months ago, “Janet, do you still have this struggle between needing to “feel” God and intellectually accepting truth about Him?”

It might help if you read the article first, but it’s certainly not necessary.

Uncovering Unknown Issues of the Heart

I think this is one of those seriously painful issues every Christian entertains when the bottom of their world drops out.  And I am a painfully average Christian!  My answer to Melanie’s question follows; although I’ve edited it, pluralized it, corrected misspelled words, etc., and as any true writer is prone to do, added to and reworded parts of it:

Yes, I still struggle with feeling God’s love for me as opposed to just believing He loves me. I am no longer desperate to feel His love – some of that is due to pharmaceutical help and some of it’s due to the inability to maintain that kind of emotional energy over an extended period of time.  But, yes, I still struggle to feel God’s love.  However, my perspective has changed a bit in the last few months.

Just as I love my husband and daughter, I realize that I don’t always feel a rush of love for them every time I see them. And as you no doubt have experienced yourself with your own families, sometimes how I do feel is less than loving. Life happens. Petty frustrations and unmet expectations result in less than loving feelings, but when their safety is threatened, or someone harms them emotionally, my response is clearly indicative of intense and passionate love for them.

There are times you tell your children “no” and they just can’t understand why. Somehow, this child that you labored over, nursed and nourished, clothed and nurtured, still doubts that you have their best interest at heart.  Instead they think you don’t trust them or don’t want them to have fun. Their minds are so clouded by what they want that they can’t comprehend a reasonable and logical argument explaining the reasoning behind your response.  In most instances, the conversation deteriorates from that point on as anger and attitude surface.   I, then, find myself frustrated and sometimes resentful for being perceived as the bad guy. Parenting is hard.

As embarrassing as this is to admit, I think I respond the exact same way my children do when God says no or closes a door — not that His response to my reaction is frustration and resentment.  But honestly, just like my children, I want what I want when I want it, how I want it, and I don’t want anyone telling me that what I want isn’t best for me.

Just the other day I asked myself exactly what I expect God to do to make me “feel” His love?

I can’t make my husband feel happy or sad or loved at will. I can try but some days, for whatever reason, the things that normally make him laugh or feel loved just don’t result in the usual emotional response. Emotions are a response to some stimuli. It’s pretty unreasonable of me to demand that God provide that stimuli on demand, but isn’t that what I’ve been trying to do? Even if He did, some days it just wouldn’t work. I’d be too distracted, afraid, or whatever for that stimuli to generate the hoped for response.  C.S. Lewis said in A Grief Observed, “The time when there is nothing at all in your soul except a cry for help may be just that time when God can’t give it: you are like the drowning man who can’t be helped because he clutches and grabs. Perhaps your own reiterated cries deafen you to the voice you hoped to hear.”  Could it be that in my desperation to “feel” God’s love, I can’t quiet myself enough to hear His still small voice?

Woman Unwrapping a GiftI think I’m starting to understand that the only thing I can do is ask God to help me recognize and experience His love for me. I can ask God to help me not only accept His love, like a gift wrapped package, and to receive it by opening the gift, but also to open my heart so I value the gift as it was intended.  And that last point is critical.  Have you ever received a gift and been disappointed because it wasn’t what you hoped for or maybe you wondered, “What am I supposed to do with this?”  In order to grasp God’s love and care I need to be able to comprehend and fully appreciate the value of the gift given.  Sometimes it’s only in retrospect that we understand and appreciate a gift.

If I can’t learn to recognize God’s loving overtures or become increasingly confident His love for me regardless of how I feel, I can imagine only two possible ways God might satisfy my demand to make me feel His love.  One, I can surrender myself to become a robot in His hand, which He never wanted, hence the gift/curse of free will, or two, I can require God to answer to me (which is absurd but bear with me a minute).   This is how that idea might play out:  Janet needs to feel love, therefore God needs to give Janet ‘xyz’ or ‘abc’ to stimulate the feeling of love she “needs” to feel.  In this way, I, Janet, the creation am dictating to my creator, God, how to satisfy me. It’s not only presumptuous but you can fast forward to the logical conclusion that all God would succeed in doing is creating a spoiled, entitled and demanding child who felt no love for Him in return because a demand/fulfillment or demand/resentment cycle would have quickly been established.  An entirely unsatisfying relationship, I dare say, based solely upon manipulation.

There’s a dynamic in a relationship with an unseen God that simply doesn’t exist in any other relationship I’ve ever been part of.  That dynamic is, of course, the fact that I can’t see or touch God Almighty.  My relationship with Him requires far more faith and trust than any earthly relationship I will ever have.  To put that in perspective allow me to use a human relationship to make a point.

I’ve been married to my husband, David, for twenty-eight years.  I see, touch and speak to him every day.  I love my husband and I know he loves me.  Even so, relationships ebb and flow.  There are periods of time in which we are emotionally closer than others.  In the twenty-eight years we’ve been married have I ever doubted my husbands love for me?  Yes; more than once in fact.  If I can see, touch and speak to this man every day and still manage to suffer through periods of time where I can’t feel his love for me, in spite of the fact that he is a good man with a servant’s heart, why should I be surprised that I can’t always feel God’s love for me?  Why should I expect to feel God’s love for me all the time?

falling-in-love-with-same-personI guess I’m concluding that I need to humble myself and ask Him to help me experience the love I know, without a doubt, He has for me.  I also need His help receiving His love because there is no earthly relationship that truly offers completely unconditional love and acceptance.   I have experienced my parents and husband’s attempts to love me unconditionally, however, their example, will always fall short. We’re human, we all have expectations and unfortunately those expectations color our interaction with others either through spoken word or subtle body language, attitudes and actions. Only God offers unconditional love.

I need to realize that all my earthly experience with love has been flawed.  I don’t have a pure worldly example of what true unconditional love looks like.  So how can I possibly compare the way I perceive God’s love for me and decide if it measures up?   Personal experience has taught me that at some point, in some way, love will let me down.  Unfortunately, I think life has taught me to expect that God will let me down too, and sometimes my circumstances seem to scream that He has.  It’s not true but people see what they expect to see, myself included.  And perception and reality are often two very different things.  The problem is that we can’t always recognize the difference.

Christians encounter so many different situations but regardless of the specific stressor many of the same emotional responses are generated and our response to those emotions is complicated by our faith and trying to lean on and trust God while simultaneously dealing with feelings of abandonment and betrayal or as if in the grand scheme of things His plans supersede our individual value to Him.  It often feels as if we are but pawns in the pursuit of the lost, and that the wounds we suffer along the way are somehow acceptable, unintended consequences.  I think we feel that way because that’s what we actually see played out before our eyes in the world around us – it’s how humans act, but not how God acts.  I swear the hardest part of grieving is trying to reconcile my real world experience with God because He is holy and we have no visible representation of what holy really looks like when played out on the world’s stage.

This I do know because the Bible says it’s true, we are not expendable or deemed more or less valuable than any other Saint or sinner in God’s eyes.  He does not operate on the philosophy that the ends justify the means.  The Bible clearly states that God is love – everything about who He is and how He works is the living embodiment of love.

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1_corinthians_13_4_8_by_yods-d4r0d511 Corinthians 13 tells us exactly what that looks like.  You can substitute “God” or a personal pronoun for love in those verses and it reads something like this:  God is patient and kind.  He is not proud, rude or self-serving.  He is not easily angered.  He does not delight in evil [as the wicked do].  God always protects, trusts, hopes, and perseveres. God never fails. 

Since we only see glimpses of God’s innate character (displayed through lives being transformed (sanctified) by the Holy Spirit in fellow believers) and never see a fully sanctified believer we are tempted to believe that God behaves like humans do.  It is a struggle to see Him filtered through the words on the pages of our Bibles.  But even as Satan whispers his lies, your fear-filled heart is wrestling to cling to your faith in spite of, and also because of your circumstances, and you, like everyone else, become all too aware of your brokenness, exhaustion and most of all your absolute ineptitude.  It’s frustrating, horrifying, discouraging and frightening and we all end up doubting and questioning because God made us insufficient in our own power.  All those feeling are magnified by the knowledge that His ways are not our ways and that sometimes He allows the absolute unacceptable in our lives and we are terrified of that possibility — especially if we’ve experienced it in the past.

Ultimately, it’s clear that my desperate desire to feel God’s love on demand was in fact an unrealistic expectation.  God’s plan is best.  I don’t want to be a robot and He doesn’t want to control me.  He wants me to choose to love Him just as He choose to love me.  I want a mature love relationship with Him not the relationship of a temperamental toddler and an adult.   In moments of desperation, I need to quiet myself, or in the event that I can’t manage that in my own efforts, allow God to quiet me, so that I can actually hear His voice speaking to me, reassuring me of not only His presence, but of His unfailing love as well.   I also need to remind myself that just as my human emotions for others ebb and flow, my ability to feel God’s love will do the same.  It’s not reasonable to expect to feel that heady kind of infatuation for or from God every moment of every day.

images (11)Furthermore, I must remember that because I have no plainly visible example of pure unconditional love, only God’s Word and the Holy Spirit can help me recognize and comprehend the reality of His unfailing love. God does not love me like anyone else loves me.  He loves me better than anyone else has ever loved me and ever will love me.  And yes, because I can’t see and touch God here on earth, I have to discipline myself to trust that what His word says is true, that He does love me with an everlasting love.  Love is commitment and love is also an emotional response to stimuli.  When I can’t feel that emotional response I have to have faith that God’s commitment to love me will not fail me.

 
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Posted by on February 7, 2016 in Faith, Grief, Links, Music

 

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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.

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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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The Judgement In Grief

The Judgement In Grief

(Facebook Post 7/5/15)

This is an interesting article (follow the link in red below) that I think everyone who grieves the loss of a close loved one can relate to:

http://stillstandingmag.com/2013/07/the-judgement-in-grief/

My comments related to the article:

I fear the judgment of others. I fear that if I struggle with any aspect of my relationship with Christ or my faith or if I am unable to turn every negative into a positive in the midst of my grief, that others will criticize me. And believe me, I have issues of faith I need to work through. It is what it is. I’m not a Kool-aid drinker, I’m a contender.

I fear others think I should be “over it” by now, moving forward, making plans for the future. That others have lost patience with my sorrow. That others believe that if I were really trusting God I would not fear the progression of Gracen’s disease or for her physical safety as she moves into the dorms this coming August.

I fear people believe I am seeking attention from my posts instead of the validation of feelings, the affirmation, I crave because I am weak and vulnerable and I need encouragement.

I fear isolation and yet I withdraw when I feel vulnerable. Church, unfortunately, is the place I feel most vulnerable. I fear disappointing fellow Christians. I fear there is an expectation for a fabulous testimony I can share now, some new ministry that rises from the ashes of my losses, or some vast wisdom to share when a year and a half down the road I’m still putting one foot in front of the other, still stunned by the ways in which life has changed.

Sometimes I do feel judged but I also realize that my perception has been blurred by the filter of grief and I know that a comment or a look that I perceive as criticism may be something else entirely.

My counselor tells me that some of the judgment I feel coming from others is likely self-condemnation. She says there is a duality at play in my mind. A part of me that is comfortable with my feelings and my methods of confronting them in light of God’s Word, but also another part of me that knows scripture and has high expectations for the perfect Christian response or maybe expects my emotions to be blunted by my faith. A battle between the heart and the mind if you will. There are definitely concepts my mind fully comprehends but my heart screams in defiance against.

I fear judgment and criticism real or perceived. I’m no super-saint and I fear I cannot handle either defending myself from criticism or even taking on a self-improvement program if I feel the criticism is merited. I’m just a broken woman striving to be what my remaining family needs and hold it together until the Holy Spirit heals the brokenness inside.

 
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Posted by on October 22, 2015 in Faith, Grief, Links

 

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Look Up!

Look Up!

(Originially posted to Facebook 9/20/14)

“My hope is that instead of searching for ‘God’s will for my life’ each of us would learn to seek hard after ‘the Spirit’s leading in my life today.’ May we learn to pray for an open and willing heart, to surrender to the Spirit’s leading with that friend, child, spouse, circumstance, or decision in our lives right now.” – Francis Chan

There’s a big difference between ‘searching for God’s will in your life’ and ‘striving to walk led by the spirit’. The first implies that we will one day stumble upon this mystery God has previously veiled from our eyes and it will be smooth sailing thereafter. The second seems much more consistent with the entirety of scripture. In visual form it’s the kneeling Psalmist “looking up” every morning for manna from heaven – or the image of a vine awaiting the ministrations of the vine dresser.

Make no mistake, laying down your will for Christ’s superior plan is no easy feat. The surrender of the will is nothing short of a supernatural work of the Holy Spirit in the life of a believer and the peace that passes all understanding seems to follow fast on its heels. That kind of peace, well, it’s definitely a pearl of great price.

 
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Posted by on October 22, 2015 in Faith

 

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