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Tag Archives: Muscular Dystrophy

Daily Battle – Daveboxx.com

I’m far more verbal than my husband, David. Should you meet him you will find that he has a dry wit, an interest in politics (shudder), and for some strange reason knows someone everywhere we go. His current boss picked up on that last fact one day when they were out and about on some job related task and turned to him and said, “Are you the Mayor or something?” She now refers to him as “The Mayor”. He has also been dubbed the “Dos Equis Man” based upon the “Most Interesting Man in the World” ad campaign for the Mexican beer brand. (That moniker is my personal favorite). 

In public David blends in until one-liners and witticisms pop out and others take note. He is known for his sense of humor and fun and he’s well-liked for that reason among others. Aside from his interest in politics you might think he’s just an easy going guy who floats merrily through life not taking a whole lot seriously along the way. 

Yet, unbeknownst to most, even close friends and family, he is surprisingly deep. It’s rare that one gets a glimpse of the man beneath the still waters, but on occasion he makes an appearance and the quiet man of faith is revealed. At heart, David is a servant leader. He loiters in the periphery as those with more gregarious personalities and outspoken tendencies take center stage.  The depths of his faith are vastly underestimated and definitely under appreciated. He’s unobtrusive, ministering in quiet corners and as a result his thoughts and opinions are not frequently requested. 

In the last couple of years we have gathered with two other couples for weekend getaways. We catch up and laugh and at some point settle in for a discussion of real life issues seeking solutions and encouragement from a spiritual perspective. That focus on the spiritual perspective is what makes those conversions unique because everyone involved has somehow had their world shaped by a need for faith. 

We are, by unspoken agreement, searching for more than worldly advice and solutions to the challenges of our lives. David is an active listener for the most part. I have this memory of David doing dishes and quietly talking with one of the other wives following one such conversation. This is the setting in which David is most likely to surprise another with unexpected insight.

However, every once in a blue moon, David just puts it out there. Clink on the link below to see one such example:

Daily Battle

Daily Battle was originally published on 6/22/16, one day after the 24th anniversary of the day our son, Cole, was stillborn. And David’s words . . . they are Cole’s legacy.

 
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Posted by on June 23, 2017 in Faith

 

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Love, Love, Love!

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Since my girls were small we’ve always made a point of giving gifts for Valentine’s Day. I wasn’t raised that way. It’s something I coerced David into, although it wasn’t difficult. I knew that when girls don’t feel loved by their fathers they tend to seek out love from other sources. More often than not their unmet need for love would be taken advantage of by a boyfriend and they would likely exchange love for sex. I didn’t want that for my daughters and having two daughters with ARSACS, a progressive neuromuscular disease, I feared my girls might seek love from the wrong people.

Gifting at Valentine’s Day was just one small way for David to demonstrate his fatherly love for his daughters. So at Valentine’s Day, a small gift and candy normally appeared for Bethany, Gracen, and Katie. Over the years David added in a card with his gifts. Inside he would write a special message for each one of his girls. He’d tell them why he was proud of them individually, what he enjoyed about them or enjoyed doing with them and he’d usually offer some encouragement before signing his name and expressing his love in writing.

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We have several of those cards lying around and for me, they are a treasure in the aftermath of the car accident that took Bethany and Katie from us. David and I made more than our share of mistakes parenting our daughters, but those cards, a coffee mug, a small stuffed bear, candles, etc., all testify to the truth that each one was uniquely loved.

The night of that tragic accident David and I were driven from the hospital we were treated at to the hospital Gracen was taken to by helicopter. I remember sitting in the back seat of my in-law’s car in the dark, holding tightly to David’s hand and whispering to him, “They knew they were loved.” Knowing they were loved was second in importance only to knowing where my daughters would spend eternity.

They were loved.

They had no doubt that they were loved.

They are still loved, and always will be until we are reunited in Heaven above, and there they will be loved eternally.

In the meantime, it’s time to start planning a Valentine’s Day surprise and personal card for Gracen as Valentine’s Day will be upon us before we know it.

Neither death nor disability will ever dim the love we have for each of our daughters. We rest confidently in the knowledge that what Satan means for evil God allows for good. And David and I know we are loved too, by each other, by our children, and by our Heavenly Father.

Long ago the LORD said to Israel: “I have loved you, my people, with an everlasting love. With unfailing love I have drawn you to myself. ~ Jeremiah 31:3

 
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Posted by on February 13, 2017 in Faith, Grief

 

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A Life Deeply Mourned & Celebrated*

Stillbirths: How a New Openness Helps Parents Cope is an insightful article originally published in Newsweek Magazine January 30, 2009. Click on the link above to read the article. It reflects a much needed and long awaited trend toward ending the silence surrounding stillbirth. In fact, in recent years the term ‘stillborn’ has been replaced with ‘born still’. It’s a small but significant change as it demands acknowledgement of the existence and value of the deceased child.

The article is more than facts and statistics. It includes personal stories and introduces an organization dedicated to helping hurting families hold onto the children who have left their arms but not their hearts.

Never their hearts.

How I wish Now I Lay Me Down to Sleep existed in 1992. I’m so thankful it is available to families today. In 1992 David and I were encouraged to hold our newborn son and I’m glad I did. You just always wish for more. . . to know the color of their eyes, the sound of their voice, the feel of their tiny hand wrapped around your finger, wiggling toes . . . memories to hold onto.

Anticipation is making me wait for that moment promised in 1 Corinthians 13:12:

“For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”

When Cole was born, by all accounts healthy, just weeks before his due date; there weren’t many support groups available specifically for bereaved parents of infants. Fortunately, that is no longer the case**. The books on the market focused on miscarriage, a worthy subject and a far more common form of child loss, barely gave a nod to the subject of stillbirth.

I was rocked by the fact that my son was healthy . . . but dead. Healthy and dead. The two are simply incompatible; yet it was true. It never dawned on me when I prayed for a healthy baby that I needed to pray for a living, breathing baby at the same time. I never made that mistake again; I assure you.

I felt very much alone.

Those who had previously experienced early miscarriage expected me to quickly move past my grief. Nobody wanted to talk about my son. It felt as if people wanted me to pretend the previous nine months had never happened. And of course the obligatory comments designed to offer hope and comfort were extended. “You can have another baby.”, “This was God’s way of taking care of an unhealthy child.” I wonder if those who offered that last bit of wisdom recognize the irony of it in light of the fact that I later gave birth to two children with a rare form of Muscular Dystrophy? I doubt it. They probably don’t remember saying those words, although I certainly recall hearing them. That’s not meant to be snarky. For some it’s better if they don’t remember; their intention was good. For others, remembering may help them recognize it is untrue and better left unspoken.

Stillborn The Invisible Death was the only resource I found dedicated solely to the topic of stillbirth. It was a painful and cathartic read for me. I’d pick it up and read until my heart hurt so badly I had to cast it aside. But it kept drawing me back. It was one of the few places I heard the barest whisper of, “Yes, that’s it. That’s how I feel!” It was heartrending. It was validating and affirming. My experiences with friends & family, emotions, and subsequent pregnancies were clear reflections of those portrayed in the book. I was not nearly as alone as I felt. I wasn’t crazy, paranoid, or ultra-sensitive. I was very, very normal.

The book is a compilation of survey responses by bereaved parents. But this editorial review found in Library Journal gives a far better description of the book than I can relate 24 years after the fact:

“According to the National Center for Health Statistics, 33,000 babies are stillborn each year. For the parents who experience this traumatic event, and for familes, friends, and professionals, this book offers understanding, hope, and comfort. Drawing on the moving and eloquent testimony of 350 parents of stillborn babies, it explores such topics as blame, shock, and guilt; seeing, holding, and remembering the baby; the autopsy and funeral; effects on family relationships, including moving and divorce; thoughts of suicide; increased substance abuse; surviving children and subsequent pregnancies; returning to normal; and reaching out to others. An empathic and compassionate book that would have been enhanced by a list of support groups and resource organizations.Nevertheless recommended. Jodith Janes, University Hospitals of Cleveland Lib.”

These many years later, I’d still recommend this book to bereaved parents who’ve experienced the birth of a stillborn child.

Seriously, follow the link above and read the Newsweek article. You never know when stillbirth might touch your life or that of someone you love. You never know when you might be called upon to minister to, or encourage, an individual or family living in the deepest, darkest grief following the ninth hour loss of the child they’ve dreamed of and prepared for. You never know . . . maybe you should.

 

*Newsweek article paraphrase

**A multitude of support groups (both online and face to face) can be found via internet search. I’m partial to While We’re Waiting, an organization dedicated to ministering to bereaved parents. Please see whilewerewaiting.org to find out about the free services offered to grieving parents.

 
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Posted by on September 26, 2016 in Grief, Muscular Dystrophy

 

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Questions I Ask & Thoughts I Ponder

The Apostle Paul said in Philippians 1:21,

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

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

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

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

I have an eternal hope.

Death is not something I personally fear.

And neither did the Apostle Paul.

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

Is it spiritual to laud his statement and rebuke mine?

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

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

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

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

Is that really wrong?

Does my motivation somehow make my desire impure?

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

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

Does it not reflect true faith?

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

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

These are questions I ask myself.

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

Maybe that’s their secret fear too.

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

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

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

These are thoughts I ponder.

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

 
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Posted by on September 10, 2016 in Faith

 

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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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