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Category Archives: Muscular Dystrophy

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.

 
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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…

 
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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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Pre-Move-in Day Challenges

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

I sucked in a shallow breath.

Dread settled deep within.

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

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

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

Waiting for that phone call.

Hoping it doesn’t come.

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

or worse.

Oh yes, worse is always on my mind.

Then again maybe you don’t know.

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

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

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

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

I should be handling this better.

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

I should be able to make decisions.

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

I should quit escaping into fiction.

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

She’s sleeping late. Is she breathing?

Is she safe in the shower?

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

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

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

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

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

to the crosses . . .

only to feel frustration rise.

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

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

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

I just need . . .

Something.

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

 

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Déjà Vu Day Arrives

save-alarms
The alarm rang at 4:15, shocking me awake from the four restless hours of sleep I’d managed to get prior to waking Gracen. Time to dress and leave for the hospital for her scheduled appointment to have her wisdom teeth removed.

The day went much as I’d anticipated.

It’s just a hospital I told myself when I first noticed the Mercy sign glowing in the predawn sky.

An inane conversation followed, “Maybe this time we will arrive early enough to get a handicap parking space.” (No such luck Monday when we arrived for her pre-op appointment.)

“Score! Right in front of the hospital entrance.” (Not many people out at 5:00 a.m.)

It’s not an emergency—nothing serious—just wisdom teeth—I told myself as I exited the car and unloaded the wheelchair from the trunk.

Deep breath in.

Exhale.

One foot in front of the other.

Whoosh! The pneumatic doors slide open. All’s quiet at the front desk: nary a volunteer in sight. Elevator ride. Registration. One more elevator ride to the third-floor surgery waiting room.

Thank God for social media and a smartphone! Facebook status updates and videos meet the currently limited duration of my attention span. Reading is simply not possible.

“Gracen Boxx”, the intake nurse calls and we are off. Double doors swing wide after a card key is scanned and we enter the surgical pre-op area which I silently note is eerily reminiscent of the ICU corridor at Freeman Hospital, just a slight bit narrower. I quietly suck in a deep breath as I follow the nurse who is pushing Gracen’s wheelchair to room 323.

Scrubs.

Tile floors.

Medical equipment.

A tech, Kim, enters the room, lowers the bed as far as it will go, and places a gown on the bed along with a plastic drawstring bag in which to store Gracen’s street clothes. The anticipated snick as the curtain is drawn follows as Kim exits the room and Gracen and I left alone in the small cordoned off space.

We gown her up, make a quick stop at the restroom next door then I maneuver the wheelchair into place, lock the wheels, move the foot pedals out of the way, lift Gracen to a standing position and perform an efficient quarter turn before seating Gracen on the edge of the hospital bed. It’s just a wee bit too tall requiring that I boost her up and back before elevating her legs and spinning her another quarter turn to lay prone.

I indulge in a deep breath before shifting the tray table and a chair down to make room for the wheelchair to sit in an out of the way corner.

Sit down!

In comes the pre-op nurse, Jennifer.

The blood pressure cuff velcroed in place.

Temperature taken.

Pulse and oxygenation recorded.

When did you eat and drink last?

When did you last take this medication and that medication individually until the list of her normal meds is thoroughly reviewed.

The dreaded IV is inserted and a steroid injected into the port in her left hand.

Breathe in.

Breathe out.

Doctor Baker enters the room in blue surgical scrubs. He greets us, asks if we have any questions and reassures us that all will go smoothly.

Next up the Anesthesiologist quickly followed by two operating room nurses. I hug and kiss my only surviving child and whisper, “It will be okay.”

hospitalbed2And then it happens. . . the moment I most dread . . . the wheel locks are released and Gracen is moving away from me. “I love you”, I call out to her retreating figure.

The first set of doors swing open, my eyes track the progress of her bed. A second set of doors swing wide . . .

and I pray.

It’s just a simple one line prayer that spontaneously whispers through my mind as the first set of doors begin to swing closed and she’s gone. . .

beyond the reach of my care.

I swallow hard.

Breathe in.

And begin pushing Gracen’s empty wheelchair back down the hall to the surgical waiting room. The fact that it’s empty is significantly sobering to me. It’s a stark reminder of what I fear most—a day when it [the wheelchair] becomes permanently empty.

I’m doing fine, I tell myself, and it’s true.

Then just before I enter the waiting room my mind flashes to another woman I know of whose husband years before was admitted for knee surgery, and something completely unexpected and terribly wrong happened and he never returned home to his wife and children. A painful, life-altering and devastatingly tragic loss of a godly husband, father, son, and beloved coach.

I swallow hard.

I know deep down in the places of my heart that I refuse to examine too closely, that this too could happen to me. Hasn’t it already happened three times before? An inconceivable cord death and the firstborn child we’d looked forward to with such anticipation never came home from the hospital. An unexpected motor vehicle accident and Bethany and Katie never even made it to the hospital. The incomprehensible diagnosis of an extremely rare and progressive disease. I know all too well that life is fragile. That it can be snatched from my feebly grasping hands oh, so quickly, so unexpectedly. I wish I could un-know it. How I wish I could return to my prior state of blissful ignorance!

Deep breath.

I find a seat, drop into it and retrieve my tablet.

I force myself to concentrate.

Ten minutes later David appears and I can breathe just a little easier. Just a little deeper.

I didn’t expect him.

Didn’t ask him to come.

But he read my blog post about this day and concluded that he was needed in spite of the seemingly innocuous nature of this surgery. The same procedure performed years ago by the same doctor in his office on my oldest daughter, Bethany. David was not present that day.

Life has changed in irrevocable ways.

I’m different.

My soul is bigger than it was before—filled with knowledge too wonderful for me—and my soul has shrunk in equal proportion by the invasion of personal experience with the fallen world—a world filled with sin and death. 

I’m very different.

Painfully different.

In no time at all, Dr. Baker stands before us. The surgery is over, it went well, no unanticipated surprises and Gracen is waking up.

Shortly thereafter we are called and escorted back to room 323 which we find empty.

We wait impatiently and then she appears, pale and groggy, but breathing. No neck brace, no breathing tube, no stitches in her face, no shards of glass shimmering in her hair. I stand and touch her cold forehead. Ask if she’s warm enough and request additional heated blankets for her feet and calves because her circulation is poor and they are often cold to the touch.

I take a seat.

Reply to a text or two.

Faint-WomanTen minutes or more pass waiting and watching Gracen’s sleepy eyelids open to half-mast then flutter closed again. And then, out of the blue, I begin to feel faint. I can feel perspiration begin to form on my upper lip and forehead. I feel like I’m going to hurl any second and I ask David if I’ve gone pale.

The tech coincidentally enters the room right after, takes one look at me and asks if I’m okay. She gets me a cold wet cloth with which I mop my face and the back of my neck. David begins to fan me then turns to Gracen as she mumbles a question around her gauze-filled mouth.

She wants to know if I’m okay.

The nurse enters the room. The tech sent her in. I tell Jennifer it’s just stress. I’m embarrassed to have such an out of proportion response to a simple and reportedly successful procedure. I feel the need to explain, but I remain mute. Does she really need to know what makes this simple surgery so stressful for me? Is my pride that important?

I begin to feel marginally better; try to find a comfortable way to sit with my head back or forward toward my knees. There’s no place to recline.

I’m shocked by my physical response. Shocked that I continue to feel faint and nauseous. Begin to wonder if it’s something I ate, but all I’ve had is coffee since four in the morning. David gets me some peanut butter filled crackers from the waiting room, which I slowly begin to eat hoping they will settle my stomach.

Every time I try to sit up I feel faint and increasingly nauseous once again.

Eventually, the nurse disconnects Gracen’s IV, heart rate monitor and blood pressure cuff. David heads out to get his laptop from his car then pull mine to the patient pickup area. (I’m not safe to drive. We will figure out how to retrieve his vehicle later.)

I’m not at all confident that I can get Gracen dressed and into her wheelchair without passing out, but I manage it weak knees and all.

I hate that I have become so weak before her very eyes. How much confidence can she have in my ability to care for her after this? I’ve managed multiple trips to clinics and hospitals and two trips to the ER one of which required a call to 911 and an ambulance ride without such a staggering reaction. Am I just getting worse instead of better two and a half years later?

I follow the volunteer pushing Gracen out to the pickup area hoping she won’t faint and tumble out of her wheelchair and that I won’t pass out in the hall.

And I breathe a sigh of relief as David pulls up just minutes after we exit the hospital. I load Gracen into the front seat and climb in the back leaving him to stow the wheelchair in the trunk.

As I lay my head back in the car, I notice I no longer feel nauseous, no longer feel faint and we haven’t even exited the parking lot. But I’m no longer in that place.

That building.

The facility David and I were transported to and treated with such care and kindness—Mercy Hospital in Rogers, Arkansas. The ER Doctor, nurses, and techs who treated us, cried for us, and prayed over me, for us, and for Gracen.

I am filled with gratitude, respect, and appreciation for the men and women who served us and serve this community day in and day out and yet it’s a reminder of dark and stress-filled days.

A reminder of what’s been lost.

A reminder of the high yet worthy price of love.

And I don’t need reminders.

Every waking breath I draw remains charged with the tension of love and loss and fear and faith. Every single breath is weighted with emotion sitting heavy on my heart.

A text message comes in just before we arrive home from the grief counselor, Ruth, both Gracen and I see. I tell her that Gracen did much better than I and am surprised by the response I receive to my recitation of my unexpected reaction a few hours later. “Yes, we [mental health care professionals] would anticipate a fairly significant trauma response as described in your piece last night.” (She received a pre-release copy of my blog post describing how I expected to feel at this time.)

Ruth’s response is as liberating as it is knowledgeable. Maybe it’s liberating because it’s knowledgeable. And as a result, my mind soaks in this truth . . . regardless of what others think; I’m not a freak, just a badly traumatized mother who manages to hold it together 99% of the time.

Now if I can just learn to extend myself a little grace, to reject feelings of embarrassment and humiliation the 1% of the time when my biochemical response is triggered by unavoidable sights, sounds, smells, words, and fears. Maybe that would represent more of a victory than trying to master my body’s biochemistry.

And Gracen—she is doing well.  When we first got home, I told her we needed that communication device we’ve been selecting and justifying to Medicaid right now.  I couldn’t understand a single word she was trying to speak.  But, the bleeding has stopped and she no longer has a mouth full of gauze.  She’s much more understandable although she sounds pretty croaky due to the tube the Anesthesiologist threaded through her nose and down her throat. We’re also managing pain well and she’s not terribly swollen, although we’ve been told that will get worse before it gets better. So Friday and Saturday may not be very pleasant. One day at a time is my mantra these days so we’ll just let tomorrow worry for itself to the best of our ability.

Many thanks to all who prayed for Gracen, David and me today.

“The insistent prayer of a righteous person is powerfully effective.” ~ James 5:16b (World English Bible)

 
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Posted by on August 12, 2016 in Adversity, Faith, Muscular Dystrophy

 

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