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Fixing Me – flannelgraphs

 

This post from Flannelgraphs reminds me of an old Roberta Flack song, “Killing Me Softly with His Song”. Below are the lyrics and a link to the original soundtrack from 1973 on YouTube.

“Killing Me Softly With His Song”

[Chorus]

Strumming my pain with his fingers
Singing my life with his words
Killing me softly with his song
Killing me softly with his song
Telling my whole life with his words
Killing me softly with his song

I heard he sang a good song
I heard he had a style
And so I came to see him
To listen for a while
And there he was this young boy
A stranger to my eyes

[Chorus]

I felt all flushed with fever
Embarassed by the crowd
I felt he found my letters
And read each one out loud
I prayed that he would finish
But he just kept right on

[Chorus]

He sang as if he knew me
In all my dark despair
And then he looked right through me
As if I wasn’t there
And he just kept on singing
Singing clear and strong

Strumming my pain with his fingers
Singing my life with his words
Killing me softly with his song
Killing me softly with his song
Telling my whole life with his words
Killing me softly with his song

 

Don’t skip the video — the lyrics alone don’t do the song justice and Ms. Flack sings it so beautifully!  “Killing Me Softly With His Song”.

Not all the lyrics express my feelings, but the idea that a stranger could so clearly speak the heart of another certainly fits.

Caitlin, the author of “Fixing Me”, shares her heart, story and faith with humility and eloquence. A teaser for the article follows.  I hope you will take the time to click on the link highlighted in red below!

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“What do you do when you’re angry with the Creator of the universe and the Lover of your soul?  When you’re incredibly disappointed in your Redeemer and feel as though He can’t be trusted with the things, the people you treasure most?  What does a professing believer do with that depth of confusion and spiritual chaos? . . .”

Source: Fixing Me – flannelgraphs – Dealing with faith and finding healing in the depths of loss.

 
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Posted by on March 18, 2016 in Faith, Grief, Links, Music

 

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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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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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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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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.

reveal light

 
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Posted by on February 25, 2016 in Faith, Grief

 

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