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Category Archives: Muscular Dystrophy

What is the Harvest of Tears?

Photo credit belongs to FreeBibleImages.org

 
My friend Melanie recently published a blogpost based upon Psalm 126:5-6, which reads, 

5 Those who walk the fields to sow, casting their seed in tears,
    will one day tread those same long rows, amazed by what’s appeared.

6 Those who weep as they walk and plant with sighs Will return singing with joy, when they bring home the harvest.

Psalm 126:5-6

In brief, it’s an important discussion about choosing to cling to God in obedient faith instead of the temporal things of this world (including those we love). Follow the link below to read this short post about costly obedience.

Costly Obedience | The Life I Didn’t Choose

Psalm 126:5-6 has long been a verse dear to my heart. It was a promise I could cling to after Cole’s death. I inscribed it across the bottom of every birth announcement mailed when Bethany Joy arrived 17 months after her brother was stillborn. She was the literal manifestation of the harvest from my promise keeping heavenly Father, but . . . and this is important. . . 

really important. . . 

the joyful harvest was never dependent upon her survival. 

Before she was ever born I understood, I was painfully aware in fact, and very very fearful, that the harvest greeted with joyful singing might only occur in Heaven. I believe that one day Cole will be a part of my long awaited harvest. I believed that then and I believe it now.

They that sow in tears will reap in joy (KJV) was the mantra that circulated though my mind throughout the duration my pregnancy. Others were quick to tell me that everything would be okay this time . . . which frustrated me beyond belief. 

To speak your fear out loud, to have it validated as a legitimate concern, loosens fear’s suffocating grip because you are no longer the only steward of truth. 

Two things allow fear to grow, isolated silence, and flippant dismissal. 

What I needed was someone to acknowledge the truth that while it was unlikely that I would lose another child, there were no guarantees that I would not leave the hospital empty handed once more. Over the course of three subsequent pregnancies, I never again counted my chickens before they hatched. There was always a part of my heart held in reserve – the part where naïveté was replaced with frank reality. 

There were other verses that competed for my attention among the cacophony of swirling thoughts and fears during my pregnancy. One of significance was Psalm 127:3 – specifically the King James Version. The Bible translation in this instance is important because different versions appear to communicate different things. Check out the versions below and see if you agree:

“Lo, children are an heritage of the LORD: and the fruit of the womb is his reward.” King James Version

“Children are a gift from the LORD; they are a reward from him.” New Living Translation 

Twenty-five years ago I wasn’t spending much time comparing Bible translations. Instead I meditated upon scripture as it was presented in my personal study Bible. I struggled to understand exactly what it meant to be “an heritage of the LORD.” But the last half of the verse impacted me most. I meditated on the King James translation and understood it literally as it was written . . .”the fruit of the womb is HIS reward”, not “[children] are a reward FROM Him.” Such a small but significant difference. I interpreted that phrase to mean that my children were literally His prize. And when you consider that in relation to Colossians 1:16b, it makes perfect sense:

“. . . all things were created by him, and for him:” (KJV)

He created Cole, Bethany, Katie, Gracen, David (my husband) and me for Himself. 

The NLT version of Psalms 127:3, it tells me that my children were created by Him as a gift to me – a reward for something I’ve done. 

Maybe both translations are correct (although it’s hard to understand how one earns the reward of parenthood). Many times I have found that scripture has a broader meaning than I initially was able to comprehend. Regardless, I approached Bethany’s birth with fear and trepidation reminding myself that the fruit of the womb is His reward, not mine. Who’s to say if my rejoicing would take place this side of heaven? God knows there are plenty of parents who have planted their seed, their children, back into the soil beneath their feet and are anxiously and sorrowfully enduring the wait for the harvest of our eternal souls. 

I don’t know about anyone else but I am so very weary of sowing in tears. Recent events in our country lead me to believe that I am not the only one who feels this way.

As Melanie’s post makes clear, we can either cling to the things of this world or to God in faithful obedience. 

I don’t think I am clinging tightly to my loved ones anymore. I think the futility of that practice has sunken deep into the very marrow of my bones. My palm is open, primarily because grasping to hold onto that which can so easily be snatched from it, is as exhausting as it is futile. 

But . . . I’m not quite sure that I am clinging to Jesus either. 

It “feels” as if I am clinging to His promises more than to the promise keeping Savior, Himself. 

The nuance nags at me. 

I can’t decide if I’m splitting hairs or if, in fact, at least one more scary and deeply painful trip through the Refiner’s fire will be required in order to strip away every last thing I might latch onto in place of God Himself. 

Am I living in obedience or desperately grasping for anything . . . anything . . . that makes me “feel” better instead of actually getting better? 

Promises make me feel better. 

The Savior . . . well it’s complicated. 

It’s easier, less painful, to anchor myself to His promises instead of to the God who allowed the deep wounds in the first place.

I know that God is the guarantor of every promise. 

I know that the Holy Spirit serves as the earnest deposit securing my soul.

I know I can have confidence in His promises because of who God is, but I’m not confident that clinging to His promises is the same as clinging to Him.

In fact, I think they are two distinctly different things.

Has my heart rejected Christ in favor of His promises because I associate Him with the deep wounds that have been inflicted upon my heart?

Do I subconsciously blame God for the events that took my children from me and for the progressive disease that is systematically destroying Gracen’s body, instead of blaming the Devil, my true adversary and the author of lies who relentlessly seeks whom he might destroy?

Truthfully, the idea that I blame God for Satan’s actions doesn’t feel accurate. 

I honestly believe (know to be true) that sin and Satan and the fall of man are to blame for all my suffering, but it’s harder to determine if I harbor animosity and resentment toward my Savior for choosing not to intervene and thwart the plans of the enemy. 

I don’t want to look too closely. 

I don’t want to examine my heart!

Yet the questions beg an answer.

Am I resentfully resigned to the sovereignty of God? 

Am I clinging to animosity instead of acceptance? 

And then I ponder . . . 

Are resignation and acceptance the same thing? Does it matter?

Both recognize that there are things beyond our control but resignation is perceived in a negative light, as a defeatist attitude, because of its association with quitting or giving up a job, for example. (Not that leaving a job is a negative experience, just that “I resign” can be stated just as accurately as, “I quit”). On the other hand, acceptance is perceived in a more favorable light because we associate it with positive things. We accept a gift or a job. It carries a connotation of approval. We accept an individual into our circle of friends. 

Research tells me that both resignation and acceptance are synonyms for acquiescence (reluctant agreement). In my opinion, a good definition for resignation is unresisting submission or acquiescence whereas acceptance is well defined as willing tolerance without approval. 

I really don’t think God cares whether we accept or resign ourselves to His plans. I think He’s more concerned about the attitude with which we do either. Of the questions above, resentment and animosity matter more to God than resignation or acceptance.

Still these questions swirl around inside, and I find myself reminded that the heart is deceitfully wicked, that no one other than God knows and understands it. (Jeremiah 17:9)

So, It’s not surprising that I can’t unequivocally answer those questions.

I can’t resolve the confusion in my heart over clinging to God’s promises or clinging to God Himself, or even correctly discerning my feelings toward God as a result of the circumstances in my life. It’s not that I want to ignore those issues because I think they are important. But, my introspective nature has led me to decide that the confusion is irrelevant because I know that the Refiner of Silver, Almighty God, will not allow ugly impurities to hide unacknowledged, even in minuscule quantities, within the silver of my soul. The God who created and loves me is never satisfied with anything less than what’s best for me. He takes me places I have no desire to go, even if I sow in tears every step of the way – for my eternal good. 

Always and only for my eternal good.

And when God works in your life, His goals are the same as they are for mine. They may play out through very different circumstances, but whatever He allows to transpire in your life, even if those things result in tears, will always and only be for your eternal good.

For I am confident of this, that He who began a good work in you will continue to perfect it until the day of Christ Jesus. ~ Philippians 1:6 Berean Study Bible

The LORD will accomplish what concerns me; Your lovingkindness, O LORD, is everlasting; Do not forsake the works of Your hands. ~ Psalm 138:8 New American Standard Bible

He will sustain you to the end, so that you will be blameless on the day of our Lord Jesus Christ. God, who has called you into fellowship with His Son Jesus Christ our Lord, is faithful. ~ 1 Corinthians 1:8-9 Berean Study Bible

We are all the fruit of the womb. God, Himself, sowed in tears when He sent His son to the cross. Everything that is for our eternal good increases the harvest – the labor of God’s heart and hands – you and I are God’s reward. 

We are the harvest of tears.


By the way, in regards to resignation or acceptance –  acceptance may sound more positive but I’d rather respond to God in unresisting submission and acquiescence than I would in willing tolerance without approval. That’s just the rebellious way I roll!

 
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Posted by on October 9, 2017 in Faith, Grief, Links, Muscular Dystrophy

 

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A Day of Hope

Gracen and Hope (left to right)

Gracen’s third semester at John Brown University brought her a brand new roommate. That is when Hope (and I mean that in more ways than one) literally entered our lives. Hope is a confident, lively, opinionated, fierce and determined little thing. In a word, she’s a spitfire!

Gracen and Hope compliment each other. Gracen helps Hope keep track of things and Hope gets Gracen out in the world. But what makes Hope unique among Gracen’s friends, family and acquaintances is one singular thing. She is disabled – or uniquely-abled – as I prefer to think of it.

Gracen was born with a genetic disease known as ARSACS – a progressive neuromuscular condition which is a rare form of Muscular Dystrophy. She has been wheelchair bound for the last three years as a result of injuries sustained in a car accident and the progression of her disease. 

Hope was born with Cerebral Palsy, a condition that generally occurs as a result of birth trauma. She gets around aided by two cuff canes and/or a scooter. Let me tell you, that girl can move! It’s absolutely shocking how quickly she gets from place to place with those canes.

Parents of special needs children worry about a great many things. Big things, small things and downright crazy things. That old saying that encourages people to major on the majors is really not applicable in a lot of special needs homes. That’s because things that are minor for average people are anything but for the uniquely-abled. Molehills are mountains and life demands the constant awareness of your environment or other impediments encountered in the outside world, from accessibility to socialization and adaptability. 

From the time Gracen’s disease became apparent, I have been responsible for paving the way through and around the things that hinder her progress. But there are some things a mother cannot do for their child; uniquely-abled or not. The list just seems to be longer for Special Needs Moms. Among the things I’m incapable of providing for my daughter, friendship ranks high on the list.

As a mom, I can provide opportunities for Gracen to connect with others, but I can’t make real friendships develop. Over the years I have watched from the sidelines as Gracen (and her younger sister, Katie, before her death) navigated through the quagmire of social situations. 

I’ve seen her overlooked, ridiculed behind her back (sadly by adults in some cases) and marginalized. It’s not something we openly talk about, but Gracen isn’t mentally disabled. She’s not unaware of what goes on around her nor of the motives of others.

Nobody puts Baby in a corner! ~ Dirty Dancing

Through the years, Gracen has surprised me in innumerable ways. I have watched her insert herself into activities and conversations repeatedly. There’s a line in the movie Dirty Dancing that describes Gracen well. 

If you remember the movie at all, Baby is the youngest of two daughters. The family dynamics portrayed in this film show Baby to be sidelined by the (perceived) superior talents and beauty of her older sister. Baby’s the afterthought. She resides in the shadows, or on the periphery of family interactions. Johnny, the resident bad boy recognizes this reality. And at the end of the movie, in the triumphant moment, Johnny says, “Nobody puts Baby in the corner!” just before sweeping her onto the dance floor and publicly showcasing her talent.

That line, “Nobody puts Baby in the corner!”, describes Gracen to a ‘T’. The only difference being that Gracen doesn’t need someone to stand up for her. She has routinely refused to be overlooked. She refuses to be relegated to the corner. I don’t think I’ve ever attended a Parent-Teacher conference where a teacher hasn’t been surprised by her outspoken class participation. I’ve seen her insert herself among her cousins at family gatherings, her peers at church and in innumerable other situations.

I really don’t think this demand for acknowledgement is a personality trait so much as it’s a subconscious response to the way society as a whole treats the disabled. It’s as if she is silently telling others that they don’t have to like her, but they will not ignore her. Hope confronts the world in the same way. Still there’s a vast difference between being acknowledged and being befriended.

In the world we live in people have all kinds of motives for the ways they interact with others. Sometimes inspired by simple curtesy, shared interests or as a ministry project. Sometimes motivated by what another can do for them. Social interaction is a complicated and messy endeavor.

However, Hope and Gracen cannot be found silently sitting on the sidelines, enabling others to pridefully pat themselves on their backs for their inclusive character or acts of service for the Lord. No, Hope and Gracen can be found at a prominent table in the center of the room living large with strong opinions and copious amounts of sassy sarcasm – holding their own and dismissing those who see them as less than others. 

And you know what? Hope and Gracen gladly invite you to their table because they have something of value to offer others, not because they have any need of help themselves. They don’t need the benevolent kindness of others (when it’s motivated by nothing more than thinly disguised pity) in lieu of true friendship.

The bottom line, of course, is that we all want to be liked and appreciated for who we are underneath all the subterfuge of human interaction. We all desire to be understood and wanted, warts and all.

Hope is her name, but it is also the gift she bestows upon Gracen and others who have found themselves living outside the norms of society. She serves as a reminder to others that their lives hold purpose and contribute to the world at large. 

Hope is not the girl who goes silently into the night. Hope sweeps in like a hurricane, disrupting and reordering the people around her. She doesn’t leave a trail of destruction behind her; but she does leave others with the awareness that she is a person, not a project. 

In Hope, Gracen found the first person who understands her from an experiential perspective. And that’s huge. 

Indescribably Huge!


They have shared attitudes, feelings and frustrations. They look at the world though a lens others cannot fathom, let alone comprehend. 

We all have a room in our hearts I refer to as the Ugly Closet. It’s the place where we hide all the feelings deemed unacceptable by society when everything within us cries out that those feelings are both reasonable and justified. When someone comes along and echoes those hurtful thoughts and feelings that door gets flung open in immediate and overwhelming relief. 

It looks a bit like that famous scene from When Harry Met Sally*, when Meg Ryan demonstrates a woman faking an orgasm in the middle of a diner (minus all the moaning and head tossing). She slaps her hand on the table emphatically shouting, “yes, Yes, YES!” in a comical portrayal of physical release. But I’ve seen that exact response (I mean the table slapping and shouting) when an individual completes the sentence, I feel like . . . the same way another would, “Oh my goodness (Slap), yes, Yes, YES (Slap)! That’s exactly how I feel (SLAP)!

That was the first gift of Hope.


“Yes, Yes, YES! (Slap)! Oh my goodness (Slap), yes, Yes, YES (Slap)! That’s exactly how I feel (SLAP)!

And those words, that sentiment, has echoed repeatedly through the air every time Hope and Gracen spend time together. Hope carries true friendship with her every time she powers her way through the front door. (She doesn’t really walk – she’s too much of a force of nature to do something so mundane).   

That’s why, anytime Hope comes to visit . . . 

I refer to it as a day of Hope.

*Okay, the When Harry Met Sally scene is not the best example (it’s kind of tacky), but I seriously couldn’t find another where the hand slapping and yes, yes, yeses were so emphatic, and that’s the image I want to leave you with, because it happens just like that.

 
6 Comments

Posted by on September 11, 2017 in Adversity, Muscular Dystrophy

 

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It’s World RARE Disease Day . . .

aegerion-pharmaceuticals-obserWhy is that important to anyone outside the special needs community? It’s important because one day rare disease may impact you or someone you love.

No one thinks it will happen to them . . .

but it happens to someone . . .

to multiple someones, every single day in this world.

And fear and frustration follow in the wake of diagnosis every time.

Every time.

Sometimes determination and tenacity are birthed . . .

Sometimes crippling despair and anxiety.

Welcome to the world of rare disease!

193057pnguTwo of my daughters were born with a rare genetic disease known as ARSACS. For 15 years their disease went undiagnosed. In fact, only two labs in the US were testing for ARSACS at the time of Gracen and Katie’s diagnosis. World Rare Disease Day seeks to raise awareness and promote research for diseases that are far less likely to receive research funding than common diseases do. That’s why I support Rare Disease Day.

rare2-300x300I’ve learned much about the medical community in my sojourn through rare disease. I’ve met warriors and wimps, fighters and folders, the courageous and the weak-kneed and have discovered that some emotionally separate themselves, and some, the bravest of the brave, count the cost and invest their hearts and souls with little regard for their own mental health. Many ride the tide between the positive and negative—between hope and hurt—just as parents, friends, and family do. They paint on brave faces then hide in the supply closet as tears flow unchecked down their faces. They smile encouragement and swallow back the fear of failure to cure, treat, and simply to help. And they carry the weight of the dashed hopes and expectations that loved one’s pile on their shoulders as they reach, ache, and long for a cure—a treatment—a miracle. They see victory . . . they experience defeat . . . all with the frailest of hope that one day, one day, disease will be vanquished and hope will reign supreme. And the wimps and folders, the weak-kneed and the emotionally distant are far too frequently former warriors and fighters, the courageously tenacious and the bravest of the brave who have stood in the gap for so many and for so long that they have paid a high personal price in the form of compromised mental and emotional health.

Did you know health care professionals, as well as family caregivers, are at risk of PTSD?  It’s due to the repetitive trauma of treating and viewing horrors we’d all rather be ignorant of.

logo_arsacsToday, World Rare Disease Day 2017, I’d like to take a minute to appreciate and thank the dedicated medical researchers and practitioners that invest so much time and effort searching for cures, prescribing medications and treatments, holding the hands and hearts of those desperate for answers and hope.

Thank you to the nurses, doctors, technicians, researchers for the kindness you offer. Thank you for treating the families with respect and dignity in the face of brokenness. Thank you for answering questions, returning phone calls and emails, and telling loved ones hard truths. Thank you for gaining knowledge and for just showing up, encouraging, and extending support along this difficult path.

And thank you to the clinic staff that handle everything from making appointments, ensuring calls get returned, and even for haggling with insurance companies and making sense of the numerous bills that lick at the heels of world-weary parents and spouses.

Thank you for caring and for doing your jobs to the best of your abilities.

I see you.

I appreciate you.

 
1 Comment

Posted by on February 27, 2017 in Chronic Illness, Muscular Dystrophy

 

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If it walks like a duck . . . 

 

duckwaddle2June or July or somewhere around there—the first person went where angels fear to tread and recommended that I find a new perspective regarding my circumstances. It was a subtle message, but I grasped it right off. At the time I remember thinking, “Am I behaving in such a way that others feel the need to give me the positive thinking message?” The mere suggestion made me doubt myself.

Frankly, I thought I was doing pretty well considering I’d just buried two children and had been learning to care for my disabled daughter in new and challenging ways.

David, Gracen and I laughed a lot the first year. We developed a sarcastic and dark sense of humor and released our grief through laughter more than tears. But apparently, I did not appear joyful, which I’m guessing, outwardly looks like happiness. I wasn’t wearing the Christian mask of perfection. It didn’t take long for me to learn that it’s not okay to be real in the expression of my emotions and struggles. It’s not okay for others to be uncomfortable because of my sorrow. It’s not okay to grieve after a certain point in time.

The funny thing is, everyone has a different idea of when that point in time officially starts. At least one person determined that six or seven months was adequate. Most people generously grant you a year. After that, well, you’re not really grieving—you’re just throwing the biggest pity party known to man.

These days, if I can get out of the house, I am no longer walking in the grief-cloud. I can follow a conversation (better)—maybe even remember details important to others. I can laugh and smile and my life’s circumstances are no longer in the forefront of my mind.

No, they’ve moved to the back of my mind.

Always present.

Always lingering and lurking and awaiting a trigger so that they can move back to the forefront once again.

I can’t explain how it happened but at some point being a disciple of Christ was not a role I played here or there; it became ingrained in my very being. The same thing happened when I became a mother. Doing motherly things wasn’t always in the forefront of my mind, but being a mother became a part of me I was constantly cognizant of.

Furthermore, the role of a special needs mother became a larger and larger part of my identity as ARSACS progressed in Gracen and Katie’s bodies. Every activity had to be filtered through how it would, could, or could not be accomplished. From homework to PE, sleepovers and simple accessibility considerations.

Everything!

The point came where Gracen needed all her everyday clothing in the top two rows of her dresser because she could no longer bend over to remove things from the lower drawers without losing her balance. So when I say everything, I’m not exaggerating a whole lot. I guess watching tv itself hasn’t changed, but getting seated on the sofa to watch tv has.

Christianity, motherhood, special needs parenting all became a part of my identity. The same thing has taken place since the deaths of three of my four children. Bereaved parent has joined the ranks of my personal identity.

Maybe you don’t see me that way but if someone asked who I was, how would you describe me to another? By outside identifiers; my height, weight and hair color—then you add in the other things commonly known about me or any other individual.

ladysnakecharmerIn Christian circles, you wouldn’t identify me by my faith unless there was something very unique about it. “She’s the woman that worships with snakes.” I guarantee you, if anyone in my church family included snakes as part of their normal worship activities everyone would know who that individual was, if not by name or sight, then by reputation.

astonmartincarWe all have a reputation. Some good, some bad, most a mix of both. The lady who drives the Aston Martin would certainly be known in most communities. And we all have things that make up our identity. Very few disabled people don’t recognize their disability as part of their identity, but it’s a defining characteristic of that person. Just like being an athlete or scholar, doctor, or maid becomes not only how others identify them but how they identify themselves.

Bereaved parent is a role that’s identified me for almost a quarter of a century now. But three years ago it became a much bigger part of who I am. Being a special needs mom has been part of my identity for twenty years, but in the last five and particularly the last three it’s become a much bigger part of my identity.

If you were describing me to a group of people in my church, I doubt others would begin with the fact that I’m married to David, that I’m a stay at home mom. Most people would skip right over the physical descriptors and start right in with, “She’s the woman with the daughter in a wheelchair”, or “She’s the woman whose two daughters died in that car accident. You know—the one that happened the day after Christmas.” And any church member whose been there more than three years would likely know exactly who I am. People want me to move past my grief yet it’s the very thing they use to describe me to others.

We are what we do or what happens to us as much as we are our appearance. If you describe someone among a group of Christians as being unsaved, it’s likely that you might be able to identify that person by their outward appearance, the things they say and how they behave and treat others. If not, the Christians among you are probably not the best representatives of Christ.

bbirdoneoftheseThe point I’m trying to make is that you should expect behavior that correlates with the descriptors you use to define someone. The unsaved among the saved may be dressed less modestly. Their speech may be liberally sprinkled with expletives. You might see them drinking to intoxication, or find them bragging about things they’ve said or done that are not common among believers. oneofthesebbirdUnless you are dealing with an abnormally moral individual there should be recognizable differences between the lost and the saved. You expect them to fit the Sesame Street standard—you know—one of these things is not like the other. That’s the Sesame Street Standard.

So please, if you are going to identify me as a special needs mother or a bereaved parent, please expect me to look and act like one. It shouldn’t always be outwardly evident in my appearance and in many ways (after the first few years) it may not be as behaviorally evident, but I will always be a special needs mom. I will always be a bereaved parent. In many ways, I’m unique because of those aspects of my identity. But when I hear the move on message; I hear that somehow I’m not supposed to look or act like the individual you’ve identified me to be. There will always be some evidence of my identity. 

Always.

I may cry at unexpected moments, flee a meeting, avoid a wedding, miss church but I may also be the individual in the group who always notices the elderly adult that needs help with a door or carrying a drink. I may be more aware of the child left behind or flat out ostracized. I may be the woman known for validating the feelings of others. The one who can hear the good, bad and ugly and still see the heart beneath. I may visit people in the hospital that I don’t know. I may encourage the broken, answer faith questions for the doubter or burst out in anger at the mistreatment of another.

Expect me to be who I am, please! And if I surprise you, woohoo, that says a lot about my progress in healing. But if I don’t; judgment, criticism, accusations of self-pity, gossip, disguised as prayer requests or not, are not welcome. I’m not justifying sinful actions, just the normal emotions and temptations we all face.

babyduckwaddle2I am who I am.

I am who God created me to be.

I am who He knew I’d be.

He’s no more disappointed in me than He is in you.

Hear me as I whisper words of another’s hard-earned wisdom . . .

Let it be!

Waddle, waddle…

 
8 Comments

Posted by on January 12, 2017 in Faith, Grief, Muscular Dystrophy

 

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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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Thirty Minutes

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

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

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

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

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

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

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

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

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

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

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

HUGE!

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

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

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

Worth getting showered and dressed.

Worth having a biopsy.

Those thirty minutes. . .

That feeling of freedom . . .

it’s priceless.

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

 

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Lessons on Suffering

Pauls-thorn-in-the-flesh

It was the Spring of 2013, and I was struggling with the myriad of difficult circumstances our family was facing and attempting to reconcile my spiritual beliefs in light of those circumstances.

Gracen and Katie had been diagnosed with ARSACS, a rare and progressive form of muscular dystrophy a year before. Their prognosis was not encouraging. We saw increasing deterioration in Gracen’s health, which seemed to be moving faster than we’d expected based on the limited amount of information available. Bethany had completed her freshman year of college at the University of Central Arkansas and was growing increasingly cynical toward the faith of her youth. And David’s job was in jeopardy. He is the sole breadwinner for our family and we were unsure if he would qualify for unemployment benefits. Needless to say, I was a tad stressed.

Funny how none of the things above was my personal problem. Each one was a battle for those I love most deeply and as a wife and mother, their suffering became my own. The curse of empathy is the ability to personalize another’s suffering as your own and that’s exactly what I did. Every physical setback Gracen and Katie experienced resulted in grieving the lost abilities for my daughters and for myself. Each time Bethany attacked a biblical truth, I ached and feared for her, for her future, for her eternal safety and for myself knowing her choices might lead me to endure painful consequences alongside her. And I was well aware how a man’s job impacts his self-esteem not to mention the burden of financial insecurity.

One morning I sat out on my back patio with my bible and smartphone and began searching the scriptures for what God’s Word said about suffering. This is what the Apostle Paul wrote about his own trials:

7 And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure. For this thing, I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly, therefore, will I rather glory in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.”  —  2 Corinthians 12:7-10 (KJV)

When Paul asked God to remove the thorn in his flesh, this was God’s response:

(2 Corinthians 12:9)  “My grace is sufficient for thee . . . “

“My strength is made perfect in weakness . . . “ KJV

Or in another translation

“My power is perfected in weakness . . .” NASB

006-jesus-gethsemane

Christ praying and sweating blood in the Garden of Gethsemane

In 2 Corinthians 12:7 Paul tells the reader the purpose of the thorn in his flesh. I find it interesting that Paul knew and understood why he was suffering, just as Christ did in the Garden of Gethsemane, yet both Paul and Christ asked for their suffering to be taken from them. That tells me that understanding God’s purposes doesn’t make suffering any easier to endure. Knowing why doesn’t make the hurt or the fear go away. The truth is that, in our humanity, we are desperate to escape pain in spite of recognizing God’s greater plan.

In this particular case, the purpose of Paul’s thorn in the flesh was to keep him humble. Paul understood that the normal human response to being singled out by the resurrected Lord—and receiving the sheer abundance of revelation he received—would commonly result in pride; a very destructive character trait.

Paul described the thorn in his flesh two ways:

1)  As a gift; well he doesn’t actually call it a gift.  He simply says it was given to him which implies to me that it was a gift and its purpose implies it was a gift from God (to keep him humble).  Funny how a message from the enemy to buffet a believer could be seen as a gift from God when it serves His purpose. And it was a good thing because it saved Paul from the pain and destruction pride brings. Maybe some of our sufferings are considered good from God’s perspective because it saves us from a fate that is far more detrimental to our overall well-being or damaging to our character.

2)  As a message from Satan to torment him.  It’s as if God allowed Satan to afflict Paul, just like God allowed Satan to afflict Job.  The Bible is riddled with such instances.  Satan intended this thorn in Paul’s flesh to hurt Paul just as Satan, via the conduit of his brothers, intended harm, even death, for Joseph.  Satan was also allowed to bring Christ to the cross, although Jesus laid down his own life in obedience to God.  Satan’s intent was to destroy God’s plan of redemption but again, God thwarted Satan through Christ’s resurrection which defeated the power of sin and death in men’s lives. It appears that two plans are being implemented simultaneously with very different goals. Satan’s goals are destructive but God is well aware that Satan has set out to destroy His children and God uses Satan’s own devices not only to thwart Satan’s plans but to triumph over them. Isn’t that the most satisfying form of serving justice and meting out righteous vengeance—to turn your enemy’s own evil plans against him? It’s pretty much the ultimate slap-down.

Although the message Satan wanted to communicate to Paul isn’t directly outlined, we can extrapolate it ourselves based on what we’ve heard other broken believers express through trials. Here’s a reasonable sampling:

1)  God doesn’t love you or He wouldn’t have allowed this bad thing in the first place

2)  If God really loved you, He would have healed you from this affliction

3)  God isn’t as powerful as He claims because He obviously can’t heal you or He would have

4)  God can’t protect you from me (Satan) – I’m more powerful than God

Just like Job, when Paul didn’t respond to suffering the way Satan expected, Satan added to Paul’s affliction.  2 Corinthians 11:23-27 says that Paul suffered more than any man for the sake of the gospel.  Paul:

1)  Received 39 stripes on five separate occasions at the hand of the Jews

2)  Was beaten with rods three times

3)  Was stoned once

4)  Was shipwrecked three times

5)  Spent a full day and night in the ocean on at least once

Throughout his journeys to spread the gospel, Paul’s life was in danger from robbers, fellow Jews, Gentiles and false Christians wherever he went and however, he got there.  He suffered from cold, exposure, manual labor, sleepless nights, hunger & thirst all while shouldering the concerns of the churches he planted.

Satan uses affliction to:

1)  Discourage and torment believers

2)  Derail efforts to spread the gospel

3)  Cause believers to doubt God’s love, kindness, and power

I recently read a very interesting article about John 10:10, “The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly.” The article examines the Greek words in this verse to aid in gaining a better understanding of the scripture. Click on the following link for an eye-opening read from the Renner Ministries Blog:

The Devil Has a Plan For Your Life!

God uses affliction to:

1)  To prevent us from becoming prideful — 2 Corinthians 12:7 (See above); Or maybe to prevent us from developing some other trait that damages our character or is personally destructive.

2)  To save His chosen people:

“Now do not be grieved or angry with yourselves, because you sold me here, for God sent me before you to preserve life. . . God sent me before you to preserve for you a remnant in the earth, and to keep you alive by a great deliverance.” — Genesis 45:5 & 7

“You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” — Genesis 50:20

3)  To provide His children with the assurance of their own salvation:

The Spirit Himself testifies with our spirit that we are God’s children.” —  Romans 8:16

4)  Conform us into the image of Christ and share in the fellowship of His suffering, His consolation, and His glory:

“But we all, with open face beholding as in a glass the glory of the Lord, are changed into the same image from glory to glory, even as by the Spirit of the Lord.”  — 2 Corinthians 3:18

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose. For those God foreknew he also predestined to be conformed to the image of his Son . . . And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified. — Romans 8:28-30

“And if we are children, then we are heirs: heirs of God and co-heirs with Christ—if indeed we suffer with Him, so that we may also be glorified with Him.” — Romans 8:17

“For just as the sufferings of Christ overflow to us, so also through Christ our comfort overflows. . . And our hope of you is stedfast, knowing, that as ye are partakers of the sufferings, so shall ye be also of the consolation.” — 2 Corinthians 1:5 & 7

“But rejoice that you share in the sufferings of Christ, so that you may be overjoyed at the revelation of His glory.” — 1 Peter 4:13

5) To produce endurance, develop your faith, and lead to increased spiritual maturity:

Be assured that the testing of your faith [through experience] produces endurance [leading to spiritual maturity, and inner peace]. And let endurance have its perfect result and do a thorough work, so that you may be perfect and completely developed [in your faith], lacking in nothing. — James 1:3-4 AMP

6) Enable us to comfort and encourage others who are suffering:

“Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” — 2 Corinthians 1:3-4

7) To display the works of God:

“His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus replied: “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” — John 9:2-3

crown-and-thorns8)  To earn eternal rewards that will far outweigh the temporal suffering we experience in life:

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” — 2 Corinthians 4:16-18

 

Why is it important that we understand God’s purpose in allowing His children to suffer?

I think it’s critical that we realize that God uses affliction for a variety of purposes and each trial a believer encounters may serve a completely different purpose.

One thing I have discovered through child loss is that fellow Christians often try to encourage the grieving by reminding them that their current suffering will allow them to comfort another hurting soul somewhere down the road.  This may or may not be true. Depending upon the circumstances, the level of trauma involved, or the personality of the bereaved, God may never intend that believer’s suffering to be used to minister to another. The experience may be so negative that the individual may not be able to support and encourage another. The pressure to minister may re-victimize the believer or the individual may not be able to talk about their situation without inciting fear in another thereby doing more damage than good.

I have also discovered that those who are called to minister to others generally are not capable of taking on that role until a significant amount of healing has taken place in their own lives. Discernment is definitely required before encouraging anyone to minister to another as a result of their trial and also required for the tested, the survivor, to know if God is really calling them to this type of ministry or to minister to a specific individual. Ministry is about more than shared experience. Personality and approach matter.

Of all the purposes of suffering I uncovered in my research, all but one can generally be confirmed in hindsight. The one that can’t—when God allows suffering in order to prevent something He deems more damaging to His child. There are some things we will never be able to understand or explain.

Suffering almost always leads to the why question. But ultimately, having a definitive answer doesn’t make the suffering less painful or even lead a believer to embrace the pain for the joy that lies before them. Knowing why is less important than the fruit God produces as a result of affliction. Understanding why may come in hindsight, but even if it doesn’t, I believe there’s always a purpose, whether I approve of it or not, and God allows it for our individual, eternal good.

As Ruth, my grief counselor, pointed out to me recently, at creation, God proclaimed everything He created “good” not “perfect”. Why would Adam be made caretaker of all of creation if there were no problems to resolve? Had there been no problems, Adams job would have been superfluous.

Perfect is a life without problems, without suffering. Good is a life that includes problems, inconveniences, and even suffering. It’s a life that matures through time and experience. It’s a life that includes overcoming adversity, recognizing our dependence upon God, helping our fellow man, bringing glory to God and earning eternal rewards. We don’t earn anything unless we work for it. And God’s grace is sufficient to enable us to live a good life in spite of trials, afflictions, and suffering.

 
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Posted by on August 27, 2016 in Adversity, Faith, Grief, Muscular Dystrophy

 

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