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Pre-Move-in Day Challenges

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

I sucked in a shallow breath.

Dread settled deep within.

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

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

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

Waiting for that phone call.

Hoping it doesn’t come.

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

or worse.

Oh yes, worse is always on my mind.

Then again maybe you don’t know.

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

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

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

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

I should be handling this better.

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

I should be able to make decisions.

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

I should quit escaping into fiction.

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

She’s sleeping late. Is she breathing?

Is she safe in the shower?

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

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

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

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

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

to the crosses . . .

only to feel frustration rise.

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

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

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

I just need . . .

Something.

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

 

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Welcome to Paranoia!

(Originally published on Facebook 11/17/14)

letter-to-mePlease take a moment and read this blog post from themighty.com, entitled, “A Letter to the Me Who Was Terrified of Our Diagnosis”, before reading any further. (Link highlighted in red below)

A Letter to the Me Who Was Terrified of Our Diagnosis

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

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

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

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

There came a time when, due to the progressive nature of the girls’ disease, I no longer had to fight to have doctors acknowledge a problem existed. However, at this point I encountered an unexpected attitude from medical professionals. There is a school of thought within the medical community that promotes the idea that the root of the problem is irrelevant. Treating the symptoms is sufficient. Weary of the battle, worried about the future and afraid to look too closely into the future, I acquiesced.

Then one day, having to find yet another neurologist, I stumbled upon Dr. Phillips, a new pediatric neurologist had arrived in NW Arkansas (actually, I think she was the only “pediatric” neurologist in the area at that time). She was a tiny sprite of a thing with a warrior’s heart. After several appointments she turned to me one day and said, “I think we need to search for a diagnosis. You need to know if a condition leads to other medical issues so that we can watch for those and not be surprised by them.” So the hunt was on — and it took years.

Dr. Phillips eventually married a fellow neurologist, and became Dr. Balmakund. When her husband began working at the same clinic, Dr. Balmakund became known as Dr. Mrs. Balmakund. She is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others; medical professional or not. She loves her patients and their families. She takes her undiagnosed cases to monthly conference calls with her peers and to medical conferences where she questions other specialists; always seeking to find another patient presenting with similar symptoms or to find that one specialist who has knowledge of a condition she is unfamiliar with. She has no ego where kids are concerned. She willingly sent us to other specialists and eventually one, who himself, was unable to provide a diagnosis, did suggest two tests that might reveal one. After jumping through a series of insurance hoops, a full fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.

Yipee, right?

Wrong!

David and I found ourselves less than prepared to hear the prognosis revealed one Spring morning at her clinic. However, Dr. Balmakund did not abandon us but set us up with a neuropsychologist to help us work through our fears and concerns and to guide us in the best way to inform all three of our daughters of the less than desirable diagnosis we’d received. Dr. B, as she is affectionately known to many of her patients, has been there for us every step of the way — has gone above and beyond with hospital visits and follow-up phone calls. She has been a gift from God and we could not be more grateful.

In fact, God has been doubly good to us as Amy Grant used to sing. Dr. Mrs. Balmakund works in a practice of like-minded professionals who have supported and encouraged us in our most difficult and darkest moments. They have shared hard truths with love and have pushed us to seek outside help we likely would have made do without. We have needed them and they’ve simply stepped up and in.

Drs. Karkos, Scott and Balmakund have done for me what the woman in this article did for herself. They have ministered to our entire family, not just their patient. In that, they are truly remarkable and have blessed us beyond measure! They are among those I think of when I hear or think of Philippians 1:3, “I thank my God upon every remembrance of you.”

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

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

 

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Laughing at my Nightmare

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

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

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

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

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

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

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

 

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I Can’t Do This Anymore!

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

 

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I Can’t Do This Anymore!

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

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

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

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

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

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

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

 

 



 

Helping the Bereaved Bear their Burdens

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

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

3.  Be extremely careful in the use of Romans 8:28,  “And we know that all things work together for good to them that love God, to them who are the called according to His purpose.” (KJV)  There are a time and place for every season under heaven.  There are a time and place for this verse. I personally think it’s more harmful than helpful in the face of raw grief and more appropriate a year or two down the road when the bereaved can look back and hopefully recognize the fulfillment of this promise.

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

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

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

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

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

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

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

 

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Hard Times, Satan’s Devices & Faith

Hard Times, Satan’s Devices & Faith

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

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

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

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

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

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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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Laughing at my Nightmare

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

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

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

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

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

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

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

(Facebook Post 10/2/15)

 
 

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A Letter to the Friend of a ‘New Normal’ Grieving Mother

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JULY 1, 2015 BY NATHALIE HIMMELRICH
http://stillstandingmag.com/2015/07/letter-friend-grieving-mother/

This article (Click on link in red above) is well worth the read for those who wish to understand the heart and mind of a grieving mother. It is definitely a struggle to merge the pre-loss woman I was with the post-loss woman I am and will always be, in spite of the fact that I’ve been down this road before.

I could have written most of this article myself. The one unmentioned battle is that of your faith and your reality. I fear my last post offended some of my Christian friends – the “choose joy” comment and “it’s ok, God’s in control” reference in particular.

I want people to understand there is a difference between joy and happiness and that the Bible tells me there is a season for everything, even grief. I’m not choosing to be unhappy, I am, however, grieving and that process may take longer than even I would like it to. And I too fully believe that God is in control but during this time of grieving it’s not particularly comforting because He was and always has been in control even when my son died within my womb and my daughters died at the side of the road and when two of my children were diagnosed with a progressive neuromuscular disease. None of those things have been or will ever be OK with me in this present world even if they are OK from an eternal perspective.

I am by far my own worst critic expecting some supernatural ability to cope with my changing reality as the perfect Christian would but I am also far more human than holy so forgive me if in my grief I have disappointed or hurt anyone as I struggle my way through all of this.

At this point in time I relate far better to Job’s lamenting his very birth than I do to the proverbs 31 woman who has no fear of the future and while I make recognize that I can count it all joy during this struggle because of the rewards that will later spring forth, I’m too tired to make the effort right now.

(Facebook Post 7/1/15)

 

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