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Author Archives: Janet Boxx

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About Janet Boxx

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

God of the Day and God of the Night

This article was originally published on The Life I Didn’t Choose. Everyone will eventually experience times of darkness in life. Regardless of the cause, this post has value for every believer.

I was afraid of the dark until I was almost forty years old. My fear was rooted in scary childhood moments and even years of adult experience could not rip it from the soil of my psyche. I never co…

(Link highlighted in red below.)

Source: God of the Day and God of the Night

 
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Posted by on March 3, 2016 in Adversity, Faith, Links

 

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Notes from the Author

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“When I Fall in Love” by Susan May Warren, includes “Behind the Pages” which is found at the back of the book. Here’s what the author wants you and I to know:

“So often, in the Christian life, when things don’t turn out our as we hope or expect we feel robbed. . . Frankly, God promises us challenges, so we shouldn’t be surprised when they happen. But how, then, do we cope? Psalm 84:5-7 offers answers:

“Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka, they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion.”

“Pilgrimage. The journey…through life, towards heaven. God offers us refreshment in the desert, and places of strength along the way. What if our happiness isn’t only in what is ahead of us…but in embracing the now? In enjoying the moments God has given us, even in the midst of suffering? What if we lived with a mindset of rejoicing in the strength, the springs of today…in order to bear the desert of tomorrow? Perhaps the annoying vices of our loved ones might not be so frustrating. Perhaps our faith wouldn’t seem so starved.”

**The Valley of Baka is thought to be a symbolic place meaning “a desert place”, “the valley of tears”, “the valley of weeping” or even “the valley of suffering”.


 

I don’t know about you, but the idea that we grow in strength with each successive trial encourages me. We begin each new trial from a position of greater strength than the last trial. We may grow physically weaker as we age, but grow spiritually stronger as our faith is refined.  James said it this way in Chapter 1 verses 3-4,

“. . . the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect (mature) and complete, lacking in nothing.” (NASB)

We may not “feel” strong, or even as if we are being strengthen. In fact, I daresay most of us feel incredibly weak during the fiery trials of life. Yet after we emerge from the trial we are often surprised to find ourselves stronger precisely because we’ve passed through the fire. In the fire the Holy Spirit quietly accomplished His supernatural work while our distracted and overwhelmed hearts and minds struggled to simply trust and obey.

 
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Posted by on March 3, 2016 in Books, Faith

 

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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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The Refiner’s Fire by Ewen Huffman

refining-silverThere was group of women in a Bible study group studying the book of Malachi. As they were studying chapter three, they came across verse three, which says: “He will sit as a refiner and purifier of silver.”

This verse puzzled the women and they wondered what this statement meant about the character and nature of God. One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study.

That week this woman called up a silversmith and made an appointment to watch him at work. She didn’t mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest to burn away all the impurities.

The woman thought about God holding us in such a hot spot – then she thought again about the verse, that he sits as a refiner and purifier of silver.
She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left even a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, “How do you know when the silver is fully refined?” He smiled at her and answered, “Oh that’s easy, when I see my image in it.”

 
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Posted by on March 1, 2016 in Faith

 

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one key to walking through suffering | A Holy Experience

Originally published on Ann Voskamp’s blog,  A Holy Experience, “One Key to Walking Through Suffering” was written by Bethany Hoang.  Bethany co-authored The Justice Calling: Where Passion Meets Perseverance with Kristen Deede Johnson.  She asks how we continue to believe that God is good, that He loves us, is a God of justice who heals and restores in the face of the extreme suffering we see in our world today.  Follow the link below highlighted in red to read the article and soak up the beauty and freedom of restorative lament.

God invites our questions and pleadings rather than our despair and silence.

Source: one key to walking through suffering | A Holy Experience

 
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Posted by on February 29, 2016 in Adversity, Faith, Grief, Links

 

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Two Years Later . . .

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

 

Two Years Later . . . 

This morning, the 2nd anniversary of Bethany & Katie’s deaths, I woke up in my in-laws guest room and told the Lord,

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I miss my babies.  I miss the life I used to live.  I miss the sweet ignorance of not knowing what disease plagued Gracen and Katie’s bodies, the unappreciated bliss of an unknown prognosis.  I miss my failure to understand that You, Lord, promised to walk through this life of trials with me, never once leaving me, but not to protect me from the free will of others and not to make life pain free.

 

I miss waking up with purpose.  Waking to enjoy the the birds singing and the sun shining.

I miss hugs and smiles and laughter — the sounds of life in my home.  I miss making cookies just to hear Katie’s whoop of joy.  Watching David and Bethany laugh over movie lines that cause me to roll my eyes.  Seeing Katie sit at Bethany’s feet joyful that her big sister was home from college.

I miss arguments and bad attitudes and snark and sass.  I miss seeing Katie curled up in David’s lap to watch a movie, David teasing Bethany and listening to him negotiate with Katie for hugs and kisses.

10246606_730773960317860_6144985397676167154_nI miss sibling rivalry and laughter and two ganging up on one.  I miss hearing how Gracen stood up for Katie at school, how Bethany watched out for Gracen and coming home to find all three watching music videos loud enough for the neighbors on either side to enjoy (?) too.

I miss praying for Bethany and Katie.  I miss inviting You, Lord, close instead of desperately clinging to You.  I miss what was and will never be again.  I miss the life I’d planned to have.  I miss ignorance and curse knowledge and I hate the last images of Bethany and Katie seared upon my mind, taunting me with their stillness, eyes once full of life and love vacant and unseeing.

I miss the me I used to be; the me I wish I could be again.  I miss the me who did not live with the ever present ache of loss.  The me who did not have to fortify herself for a simple trip to church, the me who did not have to plan in advance answers to everyday questions to guard my heart, my privacy and to avoid making others uncomfortable.  I miss genuine smiles.  I miss the ease with which I faced a day and the dark of night; of restful sleep, a focused mind, and simple motivation.  I miss anticipation and excitement.

IMG_3507 (2)I miss having all the bar stools at my counter filled. . .  I just miss so much — it all haunts me while I’m simultaneously thankful for Gracen and David.    Joy and sorrow side by side — both aware of all I have and all I’ve lost in every moment of every day.  One word defines my life — bittersweet.

And as I rolled over and curled in upon myself, I asked the Lord to help me get up and get going, to be a good house guest, to ignore the onslaught of sorrow, deep and numbing. To be able to be present instead of withdrawing from everyday conversation in desperate need for time alone — for the distraction fiction provides.

I finally rose at 10:30, hours later than I usually rise when we visit Kansas City.  And when I entered living room Sunny greeted me with a warm, “Good morning sleepyhead”, and Donna quietly went about frying an egg for me, then sat down at the table to visit with me while I ate.  No frustration, just uncomplicated acceptance and the kindness they have always shown me over the last twenty-eight years.  I found my heart full to the brim with both gratitude and sorrow — both of which my wonderful in-laws share with me.  I am not alone in my loss, in my sorrow, and in gratitude for what remains.

Empathy (shared sorrow) is so much more comforting than the fellowship of sorrow and pity. Pity pops in to express sympathy and promptly exits. Pity is love without commitment. It lures and deceives the grief-stricken with a promise of support only to silently slip away. Shared sorrow blesses the grieving by claiming a seat at the table of sorrow and dining on the bitter taste of disappointment and despair; drinking from the cup of agony before pulling out the dessert plates and loading them up with the sweet savor of united hearts and minds.  Shared sorrow is committed love.

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Helping the Bereaved Bear their Burdens

1.  People outside the immediate circle of loss, tend to view the death of a loved one from a broad, general perspective.  The bereaved grieve in fine detail. Acknowledging specific losses, unfinished plans, a lost legacy and the empty seat at the dinner table communicates to the bereaved that you care about the depths of their loss.

e9ee9b4bef3f86fba3571ecd3f0cbe512.  Speak the loved one’s name.  When a baby is stillborn or dies shortly after birth the family is left with a void they are unable to fill with memories of their child.  Using their child’s name, asking about the infant’s birth weight, length and hair color affirm the child’s worth. Avoidance equals isolation.

3.  Speak the loved one’s name-regardless of their age at the time of death.  As time goes on, the name of a loved one is spoken less and less frequently.  The bereaved want their loved ones remembered.  Mentioning their name, telling a family member you thought of their loved one and you miss them is a great blessing.  Speak about their loved one in a positive way, don’t just say how sorry you are for their loss.

4.  Many bereaved parents feel as if others treat them as if they are cursed following the death of a child. Avoiding bereaved parents because you are unsure what to say or do can frequently be perceived in unintended ways.  So, avoidance is not the answer. Call or visit and simply say, “I have no words.” “I don’t know how to help, but I want to be there for you. Tell me what you need to hear from me.”, and if you love the bereaved person keep trying to reach out, but don’t make them responsible for making you feel comfortable in their presence.

5.  Don’t expect the bereaved to step back into ministry roles and other normal activities. Some will return quickly, some will take six months or a year. Some will never return to that specific ministry or activity. Be sensitive. Churches are often in need of members to serve, but be careful not to push.

cdd180cb45e020a4fd5a2efa4c6415dd6.  Never compare the loss of a loved one to the death of a pet (it’s more common than you think). The loss of a child and a spouse are the most devastating losses the bereaved endure. Don’t tell the grief-stricken that you understand how they feel because you lost a uncle, grandparent or parent. The level of intimacy in the severed relationship determines the depth of grief experienced.

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 7.  When a parent loses a child, never say, “Well at least you have two more.” or “Be thankful for the ones you still have.” The death of one child doesn’t negate the parent’s love for the rest of their children. Grief and gratitude can and do co-exist. And the birth of subsequent children do not replace the child that died.

8.  Don’t be offended if the bereaved don’t personally call you to notify you of the death. It is not at all unusual to for the bereaved to be too emotionally overwrought to call even their closest friends and family members. It’s is however, very common to contact one family member and ask them to contact the rest of the family. It’s not a slight. Some are busy at hospitals, others are in shock, and some just can’t speak.

9.  Don’t ask for details especially in the case of suicide, murder, or accidents. Those who need to will share that information with someone they are close to. Others do not want to remember their loved one that way and may have been traumatized by things they’ve seen and experienced. Rehearsing it is retraumatizing and sometimes leaves the bereaved feeling as if you care more about the gory details than you do about them.

10. If you have pictures of the deceased, email copies or get prints made and bring them to the family. Every picture is a coveted treasure.

 
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Posted by on February 28, 2016 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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Breakdown & The Calm After the Storm

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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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Breakdown

It’s time to get up, past time really.  Breakfast, shower, dressing . . . then my turn.  It all takes time, but I just do not want to get up and we’ll be late if I don’t get moving soon.

It’s raining.  Again.  I hate rain during the daytime.  Hair appointments at noon.  Still, I’d rather stay in bed.  Bury my head in my pillow — close my eyes — forget the world, it’s disappointments, my responsibilities — life and the fact that I’m still living it.  Breathe in, breathe out.  Breathe in, breathe out.  Over, and over, and over, and over, and over, and over again.  Why must I get up?  Why must I breathe in and out?  Why must I do it all over and over again?

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For the love of Gracen.

For the love of Gracen.

It’s all for the love of Gracen.

 

 

IMG_2964 (1)My heart is anchored here but I long to flee — from what happened — from what is yet to come — to fly far, far away.  To flee this unwelcome reality — oh, to be able to pretend it never happened!  To be able to board a time machine and travel back, back before the collision, back before diagnosis, back before Katie, before Gracen, before Bethany and Cole.  Back before marriage, back before love, back before David, back before my very existence, erasing every footprint, every memory of me.  Back before every bit of my existence tainted the lives of the people I love far more than life.  Just to have the opportunity to un-hurt others by erasing me.

It’s 10:34 a.m., I have to get up . .

I can’t.  I just can’t do it.

Tears falling.

Call David ask him to cancel our appointments.  Ring, ring.

Oh, no, she’s up! Hang up the phone.  Get it together before she sees you!

IMG_3518Ring, ring . . . Oh, crap, David’s calling back and Gracen’s right here!  I can’t talk in front of her.

Leaping off the bed, head down.

“Hey, Janet, Did you call me?”

Leave the room NOW!  Find a place where she can’t hear you!

“Janet, I can’t hear you . . .”  David’s voice comes over the phone line.

Sob.

“Janet?  Janet? What’s wrong?” David’s voice is Frantic now.

“David?”

“Janet?, What’s wrong?”

More crying.  I hear David’s breath hitch through the phone line.

IMG_3518“I’m sorry I had to leave the room.”

“Where’s Gracen?”

“She’s up.  She’s in the bathroom.”

“What’s wrong?”

Another sob slips out.

“I’ve just run out of the energy necessary to force myself to do this today.  I was just calling to ask you to cancel our hair appointments.”

“I’m coming home.”  Frantic.

“No, no, don’t come home.  I’ll be okay.  I’ll be okay.  I just can’t keep our appointments. Not enough time left now anyway.  I’m up.  I can take care of Gracen.  I just don’t want her to see me like this — to worry her.”

“Where are you?”

“Katie’s room.” The room next door to Gracen’s that now holds two twin beds without sheets and blankets, void of anything personal.  Katie’s empty room spins through my mind.

“I’m sorry for upsetting you.  Can you please just cancel our appointments?  I can’t talk to anyone right now.”

“Sure”

“Don’t come home, David.  I’ll get it together.  I’m sorry. I’m so sorry!”

Forty-three more days until Gracen heads to college.  I simply cannot unravel for forty-three more days.  I tell myself, take your meds —  get it together.  You can get up for forty-three more days.  You can.  You can.  You will.

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The Calm After the Storm

Wow! How did that get so out of control?

It was Gracen’s appearance at the same time David called back. The ring tone flooding my system with adrenaline, silent tears turned to sobs as I desperately tried to flee my room preventing Gracen from seeing me in such a state.

Oh, she’s seen me cry before, but only the controlled version.  Not ugly, wretched sobs.

But today I was not able to shelter Gracen from my grief.  I upset her although no words were spoken.  I know she is afraid she will lose another family member; she recently admitted as much.  I fear that too, but for her, all that’s left to lose are her parents — the people who have always represented safety and security to her.  I don’t want to inflame her fears.

And David — he’s seen discouragement and apathy, he’s held me through tear filled nights, he’s shouldered extra burdens when normal parts of life just seem to overwhelm me.  He’s been party to a meltdown or two or ten, but to receive a call at work — never before has he had to cope with a long distance breakdown even when I called to tell him an ambulance was transporting Gracen and I to the ER after a frantic 911 call. Today, I could hear the fear in his voice. It devastates me to know I did that to him!

Heaping fear upon grief — I shoulder my load — Gracen’s and David’s too, as they are forced to shoulder mine as well.  Grief felt far more individual when Cole died — or maybe time has just softened the memories, blurring the rough edges of grief, leaving some sharp and biting and others smooth and fading.

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Helping the Bereaved Bear their Burdens

1.  Understand that it is often a struggle for those who mourn to get out of bed, do everyday tasks, leave their homes, socialize. Others become hyper involved; anything to keep themselves moving, distract themselves from the constant pain. Those who mourn may bounce back and forth between the two extremes.

2.  Realize that the bereaved often perform a grieving cha, cha, cha of sorts.  They try to attack their grief, process and get through it, then overwhelmed, try to suppress it, hide from it, deny it’s existence and ignore it.  Be prepared to go with the flow.  Talk through their struggles with them if they bring them up, or grant them the freedom to talk about other things.

3.  Be aware that grieving families often continue to be hit with additional health problems, trips to doctors, hospitals and emergency rooms can trigger mild to dramatic IMG_3339traumatic responses. What may be a minor problem produces anxiety on steroids. Pray them through, sit with them, validate their fears.

4.  Wives seem to take responsibility for maintaining the emotional equilibrium in the home: husbands strive to protect and shelter.  Loss makes both feel anywhere from inadequate to utterly incompetent.  Grieving men need attention too. Most will never ask for it. Invite men to sporting events, movies, poker night, fishing or lunch. They may not talk about their grief, but your presence signals support and encouragement.

5.  Understand that deep grief often brings remorse for having been born at all.  Job felt this way.  Pay attention to suicidal comments — don’t discount them.  A desire to have never been born and suicidal intentions are not synonymous, however, comments to that effect should not be overlooked.  Pray for wisdom and discernment to hear exactly what the individual is communicating through veiled speech.

6.  Be aware that the sense of personal safety and security has been destroyed for every member of the family.  Fear of experiencing another loss  is both common and rational. While uncommon, many families have suffered separate and subsequent deaths of immediate family members. Please don’t discount or brush off a bereaved parent’s fears in this area. It is a legitimate fear and they need it acknowledged.

 
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Posted by on February 27, 2016 in Faith, Grief, Muscular Dystrophy

 

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Too Tired . . .

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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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Too Tired . . .

I do not know how to do this life I’ve been left with and I really don’t want to figure it out.

I’m tired – not, let’s just end it all tired, but physically, emotionally and spiritually tired.

Tired from staying up later night after night.  3:00, 3:30, 4:00, 4:48, tired.

Tired of trying to figure out what to do with myself, for myself, about myself.

teen-depression-linked-to-online-use-250x190Tired of wondering why God didn’t simply take us all home December 26, 2013, the day of the collision that killed two of my daughters. Tired of wishing He had. Tired of thinking of what the future holds, tired of trying to brainwash myself into believing there just might be something good to get up for every day.

Bone weary, heart achingly tired.

Too tired.  Just too, too tired.

 



 

Helping the Bereaved Bear their Burdens

1.  Offer to take young children for a play date once a week.

2.  Don’t push the bereaved into activities – taking on new hobbies, jobs, etc.

3.  Invite them to do things you know they enjoyed in the past.  If they decline, ask again another day.

IMG_2959 (1)4.  Don’t expect the bereaved to behave as they did before the death of their loved one. They simply aren’t the same people any more.  They have been irrevocably changed in many ways. Don’t encourage them to “get back to normal,” or question when they will.  Don’t quash their attempts to talk about their feelings or their loved one.  They are not wallowing in self-pity, they are experiencing and coping with the normal response to loss.  Grief and self-pity are very different things! The message you are sending with comments such as these is that the bereaved are responsible for ensuring that others are not uncomfortable in their presence and that their loved one no longer matters.  Telling them to choose joy is tantamount to telling them that positive thinking or gaining a new perspective will take their pain away.

images (44)Ultimately, the bereaved feel both defiant and rebuked for loving deeply. Well-intentioned friends and family members inadvertently become unsafe for honest sharing. A failure to validate feelings elevates the turmoil the bereaved are already dealing with. They become angry because they have to  justify their feelings and their right to mourn while simultaneously questioning if they are indulging in self-pity. Invalidation leads to isolation as the grief-stricken find they cannot vent their feelings and wrestle with their faith without rebuke or correction.  Invalidation causes the bereaved to suppress their grief, wear a mask in public, hide their vulnerability and finally, it lengthens the time it takes to work through the process because the bereaved will search and search for safe people to be real with all in an effort to receive validation of both their feelings and the value of their loved one.

5.  Realize that for the bereaved, feeling bad feels bad, but feeling better feels bad too. The psyche is telling the bereaved that feeling better, laughing, having fun and moving forward means that their loved one was not critically important in their life.  Of course, that’s completely untrue, but it’s also a very common and normal way to feel.

6.   Keep an eye open for signs of depression.  Encourage a visit with their doctor for an antidepressant or antianxiety medications.  Encourage grief counseling.  Many churches provide Christian counseling services for their members, the uninsured or IMG_2952underinsured.  Reinforce the truth that depression is normal and nothing to be ashamed of.

7.  Keep an ear open for language that might indicate they might be at risk of harming themselves.  If concerned about suicide, ask them outright.  Share your concerns with their spouse, parent or their pastor.  Don’t brush it off – take those words seriously.

8.  Be aware that men, women, siblings and children grieve differently.  Families struggle to do what’s best to allow each individual to grieve in the way that is best for them but those ways are often conflicting.  One needs to talk, to be heard.  Another can’t talk and can’t listen.  If you are close to a bereaved couple, be sure they are understand that everyone grieves differently.  Recommend meeting with a grief counselor if mismatched grieving styles are creating conflict.

 
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Posted by on February 26, 2016 in Faith, Grief

 

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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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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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