Monthly Archives: September 2016

Feelings; The Bane of my Existence

Counseling-theories“How do you feel about that?”, Ruth, my grief counselor asked.

Tears filled my eyes and choked my throat as I desperately tried to prevent them from falling, to prevent a sob from escaping, while my mind grappled for words to define my feelings.

For such a wordy person I find it ironic how completely inadequate I find words to be.

“It makes me sad, incredibly sad”, I choked out.

Sad? What kind of word is that? It’s so shallow, so tame, so far from describing the intense wave of emotion that swells and rolls over my heart, that sucks the air from my lungs, pinches every muscle in my neck and shoulders, and shoots quaking tremors through my body as I struggle to maintain control.

I can’t speak without control.

I realized after I left my counselor’s office that I rarely cry. In the two and a half plus years since Bethany and Katie died, since Gracen’s health was irrevocably changed, I’ve not shed the ocean of tears I would have imagined had someone told me how things would unfold for our family that fateful day.

My therapy sessions are pretty much the only place I cry.

My counselors are the only people who ask me how I feel about anything. I’m not sure if everyone else assumes they know how I feel (based upon how they think they’d feel in my place) or if they are too afraid of the answer to ask.

And conversationally people in general use deflective phrases when we describe our feelings. “I feel like . . .” or “I feel as if . . .” are frequent precursors to deflective phrases.

“I feel as if I’ve lost everything.”

“I feel like hitting something.”

Where are the adjectives that describe the actual feelings in those sentences?

That’s how I talk to people. Those phrases distance me from the descriptive words for emotions we are often told are inappropriate or just plain wrong. They allow me to talk about facts instead of feelings. I can expound upon the events that occurred, the facts, all day long without shedding a tear. But don’t expect me to directly address my feelings because I can’t do that without breaking down.

Society seems to think it’s wrong to say,

“I feel betrayed,













and so on.

Every one of those words deemed inappropriate and negative are really just replacements for this simple two word sentence:

“I hurt.”

We like to toss out the phrase, “No pain, no gain.” in relation to exercise, but that short sentence is equally applicable to emotional healing. It’s helpful to be able to put your feelings into words because we have an inherent desire to be understood and for our feelings to be validated. But understanding and validation are not enough. We have to experience our emotional pain in order to vent it, process it and find our way past it.




We don’t heal—we aren’t restored to full emotional health—until we work our way through our painful emotions. We can’t ignore them, hide from them, bury them, rationalize them, or intellectualize them away. Those are all avoidance measures. Our hearts must heave and keen out our grief in order to heal.





Counting it all joy is fine, as long as we don’t expect the grieving to skip the passage from the onset of the trial to the spiritual maturity and inner peace developed as a believer’s faith is tested and proven. Read the verses below and it’s pretty clear that the benefits of having one’s faith tested requires passage through a process:


“Consider it nothing but joy, my brothers and sisters, whenever you fall into various trials. 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 1:2-4 (Amplified Bible)

I told Ruth recently, “You know how everyone wants you to find the silver lining around every dark cloud? Well I can’t even find the outside borders of the cloud. Have you ever looked at a dark and stormy sky and the clouds just stretch out before you covering every bit of sky your eye can see? You can make a 360 degree turn and still all you see are dark clouds stretching across the sky. That’s what it’s like. Looking at my losses and the prognosis for Gracen’s disease is like looking up and seeing a single sheet of dark, stormy, roiling clouds. I can’t get far enough away to see where the storm clouds begin and end. How am I suppose to draw a silver lining around the negative circumstances of my life when I can’t find the borders?”




Regardless, the ability to find the positive in adverse situations doesn’t make difficult circumstances easier to endure or work through. Brené Brown, in her book Rising Strong said,



“Experience and success don’t give you easy passage through the middle space of struggle. They only grant you a little grace, a grace that whispers, “This is part of the process. Stay the course.” Experience doesn’t create even a single spark of light in the darkness of the middle space. It only instills in you a little bit of faith in your ability to navigate the dark. The middle is messy, but it’s also where the magic happens.”

Apparently, as a result of my most recent trials, I have become extremely adept at the art of numbing hurt. Distraction and avoidance maneuvers are ways people numb pain. To top off Brené Brown’s list of emotional numbing behaviors which include alcohol, drugs, food, sex, shopping, work and religion among others she adds:

“And just so we don’t miss it in this long list of all the ways we can numb ourselves, there’s always staying busy: living so hard and fast that the truths of our lives can’t catch up with us. We fill every ounce of white space with something so there’s no room or time for emotion to make itself known.”

I find it interesting that the practice of religion and staying busy are included in Brown’s list of numbing behaviors, because those are two things that I’m constantly encouraged to practice. Although to be fair, I do believe she is referring to over doing any of these things individually, or completely filling your days with a combination of these coping behaviors.

As she said above, “We fill every ounce of white space with something so there’s no room or time for emotion to make itself known.” This is what I do. I read. I sleep. I think. I even write about emotions in order to avoid actually experiencing them. This is what the late great C.S. Lewis said in A Grief Observed:

“Feelings, and feelings, and feelings. Let me try thinking instead. . . Do I hope that if feeling disguises itself as thought I shall feel less? . . . Aren’t all these notes the senseless writings of a man who won’t accept the fact that there is nothing we can do with suffering except to suffer it?”


Maybe he [Lewis] tried to think and write his way around experiencing the emotions of grief too. Maybe his work, A Grief Observed, is the physical manifestation of his own efforts at numbing the pain.



I’ve been struggling for two and a half years to find a way to cope with the pain of death and degenerative disease. But maybe I’m doing little more than intellectualizing my grief as opposed to experiencing or feeling it.  Maybe I’m deceiving myself by thinking I’m confronting my feelings and circumstances in relation to God’s Word when really I’m just making myself a character in my own story as opposed to writing my story (see the manifesto on your left). Maybe I’m not “crafting love from heartbreak, compassion from shame, grace from disappointment [or] courage from failure.” Maybe I’m just chasing my tail instead of becoming one of the brave and brokenhearted and rising strong.


How does that make you feel?







And very, very broken.


I’m still lost.

All those emotions, and many more, are shoved down and shuttled aside as I continue to struggle to find the courage to process my emotions. I need to find a way to experience my feelings or healing will continue to elude me.

If anyone has any sage advice to help me through my magical mystery tour of life, please share it. Otherwise, I think the book of Jude contains the answer in verses 20 & 21:

” . . . you, dear friends, must build each other up in your most holy faith, pray in the power of the Holy Spirit, and await the mercy of our Lord Jesus Christ, who will bring you eternal life. In this way, you will keep yourselves safe in God’s love.”

And Jude tells us how we go about building each other up in verses 22 & 23:

“And you must show mercy to those whose faith is wavering. Rescue others by snatching them from the flames of judgment. Show mercy to still others, but do so with great caution, hating the sins that contaminate their lives.”




Posted by on September 28, 2016 in Faith, Grief


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A Life Deeply Mourned & Celebrated*

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

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

Never their hearts.

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

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

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

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

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

I felt very much alone.

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

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

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

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

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

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


*Newsweek article paraphrase

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


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


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Hunger Strike!

According to New Health Advisor, the primary purpose of nutrition is to fuel the brain and subsequently the body’s cells, muscles and organs.

Starvation is the process whereby the body generates fuel by progressively more destructive means until every fuel store has been depleted. Normally fuel is derived from the conversion of glycogen to glucose during digestion. When glucose is no longer available from nutritional input the body takes it from fat stores. When the body’s glucose has been expended it creates fuel from ketones stored in the liver. Once the body’s ketones have been consumed the body shifts to robbing protein stores starting with the muscles and moving to organ tissues. At this point death occurs as a result of illness due to the lack of vitamins and minerals that feed the immune system or the systematic shutdown of bodily functions known as a vegetative state. Muscle loss and a lack of energy along with a bloated belly are the hallmarks of starvation. The entire process takes approximately 70 days.

unknown-3This morning I realized that I’ve been on a hunger strike of sorts. It wasn’t a conscious decision on my part; well not entirely anyway. But I’ve spent a great deal of time trying to reconcile my circumstances, and my feelings about them, with what I know and believe to be true about the God who loves me. The thing I haven’t done is regularly sit down in His presence and let Him speak to me.

The truth is that I don’t really want to taste, chew and swallow what God wants to feed me. It’s a bitter, mushy, unpalatable meal that He has set before me, and so I’ve turned away from the nourishment I so desperately need. I’ve repeatedly refused to lift the fork to my mouth to taste, chew and swallow the bitter lessons of love, discipleship and suffering. And as a result, I’m wasting away much in the way a body dies of starvation.

In the absence of a steady diet of the Bread of Life (nutrition for the soul and spirit), I find myself weak and weary and more than likely my mind has become bloated with illogical thinking. (It’s hard to make a definitive statement on the state of my metal processing as it all makes sense to me)! Regardless, my spirit has been fueled by biblical nutrition from days gone by which leaves me vulnerable to the misinterpretation of scripture and misunderstandings about God—His character, will and purposes. It’s resulted in atrophied spiritual muscles and strength. Hence, I’m spiritually weak, weary, vulnerable and probably a bit delusional or at the very least misguided. Everything within me has shifted into self-protection mode.

I trust God with my eternal future. I trust Him to walk me through everything He will allow in my life; but I don’t trust Him with my heart. I don’t trust that He will protect me from further emotional pain—because life has taught me that He won’t. It doesn’t matter that He has a good purpose for my pain—the old the end justifies the means philosophy. It doesn’t really matter that He has provided comfort and consolation in my grief.

I think I have spiritual PTSD.


But I know—I know I’m spiritually anorexic.

Renee Swope said,

“We can find the plans God has for us when we surrender our plans to him.”

Surrender—that’s the last thing I want to do! No, fear has left me grasping to hold on to the two people I hold most dear. I’m terrified to lose them too. I wish fear were as easy to conquer as simply reciting Bible verses. “Fear not for I am with you.” “When I am afraid I will trust in you.” “Be ye strong and courageous. . . ” I know these verses, and more. They are written upon the tablet of my heart. But it’s not enough for this wounded heart . . .

“Because God loves my kids more than I do, I must trust His plan for them.” ~ Lysa TerKeurst

unknownIf you search the Internet for articles about trusting God with your children you will find the majority of the articles revolve around things that, while not insignificant, are also not matters of life and death. A quote like Lysa’s can sound painfully trite, if not impossible, to parents of sick or special needs children; especially when death is dogging their every step, regardless of the truth of her words.

Spiritual maturity is a process that requires ever increasing trust in God. And trust is hard to come by when it’s been betrayed, or feels as if it’s been betrayed. Self-protection is the knee-jerk reaction. Resistance, cynicism and even rebellion often follow.


But there are things that can help overcome those common worldly responses.



Romans 12:2 comes to mind:


“Do not conform to the pattern of this world, but be transformed by the renewing of your mind.”

And in this, I have failed.

Living on lessons learned in the past has limited ability to renew my mind let alone transform my heart.




Psalm 34:4 “I sought the Lord and He answered me and delivered me from all my fears.”

And I haven’t sought the Lord for deliverance from my fears, or my circumstances either. . .

Why you might ask.

Why would you deny yourself the bread of life?

Why deny the power of God to change your circumstances and deliver you from your fears?

God’s Word is filled with triggers that incite my fight, flight or freeze reflex. Verses that torment—that feel untrue. Verses about protection—about healing. Verses that reflect promises for the here and now—or maybe for eternity alone—or could they apply to both? God’s Word hurts!

Praise and worship music lifts me up then slaps me back down as it cycles through praise and thanksgiving followed by trials and victorious overcoming. But I don’t feel like an overcomer and I certainly don’t feel victorious.

Prayer—prayer is just plain emotional. Faith and fear, anger and resentment, trust and bitterness assault me. Prayer is an exercise in trust. It’s begging God to do that which I cannot do myself; which generates expectation—hope—within my heart. Prayer requires reaching for His hand, grasping it when it comes within reach, and trying desperately to cling to it as things continue to get worse—when it feels as if my prayers have gone unheard or worse yet—that my feelings have been disregarded.

I’m resigned to Gracen’s prognosis. Every request for the removal of the thorn in her flesh has been repeatedly answered in the negative (lest I dare hope His answer is ‘wait‘ instead of ‘no‘). Begging for a change in circumstance in the face of continued negative responses just sets me up for further disappointment. I don’t need my glasses to read the writing on the wall. Encouraging me to continue in prayer and have hope for healing leaves me feeling guilty and ashamed as if I’ve failed in my Christian duty—as if I’ve failed my daughter. However, even the Apostle Paul quit asking for his thorn to be removed after three seasons of prayer.

romans12_3And deliverance from my fears is beyond the scope of my faith . . . at this time.

My fears are all bound up in Gracen’s future, her prognosis, and deep spiritual wounds that remind me that I have trusted God for things in the past that He never promised. That’s not to say that He failed me, no, not at all, but I was still hurt by misunderstanding the promises He did make.

Sometimes I think it’s a cop-out to say I don’t currently have enough faith. Maybe you do to. But I ask you to return with me to Romans chapter 12. After Paul’s admonition to avoid being conformed to this world—after his encouragement to be transformed by the renewing of our minds—he went on to say this in verse three,

For I say, through the grace given unto me, to every man that is among you, not to think of himself more highly than he ought to think; but to think soberly, according as God hath dealt to every man the measure of faith.

In the majority of card games, cards are dealt by the dealer either upon request or as the rules dictate. If faith and trust are living and growing spiritual fruit, I think it’s highly likely that at times God deals me a bit more faith when I request it, and at other times He deals me more because His plan dictates that I will need it. The well of faith is always sufficient; but faith still needs drawn out of the well!

uninvitedI recognize that my unintended hunger strike needs to come to an end. I’ve devoured every last bit of spiritual knowledge stored up in my heart and mind. I need a regular diet of the meat of the word in order to renew my mind and transform my heart. I’m sure I’ll miss meals on occasion, but I’m making a conscious effort to be regularly fed.

Right now, my diet consists of a Proverbs 31 Online Bible Study by Lysa TerKeurst called Uninvited. It’s subtitled: Living Loved When You Feel Less Than, Left Out And Lonely.

It’s a start and it’s hard.

It’s hard because the foundation of the lessons are the love of God, as it should be. Yet, Lysa TerKeurst, points out that, “What we see will violate what we know unless what we know dictates what we see.” Did you get that? What we see undermines truths we absolutely believe about a God, and will continue to do so, until our hearts and minds are transformed. Then the truths we know will alter our spiritual perspective, thereby overcoming sight by faith.

Every time I look upon my daughter, I see disease reigning victorious over her physical body. Fear of losing her, fear of unbearable grief have created a living, breathing terror within my heart—terror of God almighty—of His plans—terror over how much His plans will hurt. And that terror undermines what I know to be true. God loves me. He loves me and I have nothing to fear from Him. But what I know to be true is not dictating what I see when I look upon my daughter. I don’t see her one step closer to complete healing. I don’t see her drawing ever closer to no more pain. I don’t see her through the eyes of eternity. The hope of eternity is obscured by the dimmest of mirrors reflecting and distorting what will be with the reality of what is right now.

And right now I feel less than—less important, less valuable, less loved than the believers who surround me with joyfully intact and healthy families. Right now I feel left out—left out of the blessings everyone around me takes for granted. Watching their children grow up, embark on careers, marry, have babies, and watching those babies grow. Right now I feel lonely—lonely for missing family members, lonely for friendship, lonely for the Lord because it’s so very hard to draw close to someone you know will hurt you, or allow you to be hurt, again—maybe even soon. Lonely because grieving is very much a solitary activity.

So I am trying with this online Bible study. My self-imposed hunger strike is over! And I’m hoping to find a way to live loved. To live in the full assurance of the height, width, and depth of God’s love for me so that I can be renewed and transformed—so that the image in my mind of the mastery of disease over Gracen’s body will be concealed—will be completely replaced—with a clear image of Gracen the way Christ will see her when she steps into His presence. That’s a pretty tall order; but I know that God is able. It won’t happen overnight; or quickly for that matter. But given time, it’s a possibility.

It’s a possibility.


Posted by on September 19, 2016 in Faith


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A Mourner’s Thoughts On Sickness, Sorrow, Pain And Death – Scott Sauls

Scott Sauls, Pastor of Christ Presbyterian Church in Nashville, a man well acquainted with ministering to the sick, sorrowful, those in pain and those grieving or living in anticipation of death, opens God’s Word and reveals important scriptural truths about suffering. This post has the power to equip the Saints as well as offering much needed validation to the suffering. Click on the link in red below to read Pastor Sauls’ article.

” Let all who have ears give heed to what the Spirit is saying to the Churches.” ~ Revelation 3:22 (Weymouth New Testament)

Source: A Mourner’s Thoughts On Sickness, Sorrow, Pain And Death – Scott Sauls

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Posted by on September 17, 2016 in Adversity, Faith, Grief, Links


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Thanks for Listening!

Thanks for Listening!

My virtual friend, Melanie, simply shares my heart, my brokenness, my faith, my struggle and my purpose for blogging. She has much to offer the bereaved and those who care for them, on a foundation of sound doctrine.

Melanie, has been such a blessing to me personally. Everything she writes echoes a chord within my soul. In this post, she touched on the one thing I have been too vulnerable – too afraid to share – that need – that craving, for ongoing support.

I hope you will read Melanie’s post and visit her blog at God is working and ministering to brokenhearted parents worldwide through her struggle.


One year ago today I began sharing my grief journey publicly on this blog.


You can read that first post here.

It was (and still is) scary to expose my thoughts and feelings to a wider audience than just the pages of my personal journal.

I’m never certain that what is helpful for me is necessarily helpful for anyone else.  But in writing it down I find that I am able to sort through things better than when I leave it bouncing around in my own head space.

I decided upfront that I would be as honest as possible about what I felt and how I was coping.  I wasn’t sure if I would post only a few times or a lot, if it would turn into a day-by-day diary or a more sweeping revelation of deeper things.

I think it’s kind of been both at times.


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Posted by on September 16, 2016 in Faith, Grief


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Questions I Ask & Thoughts I Ponder

The Apostle Paul said in Philippians 1:21,

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

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

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

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

I have an eternal hope.

Death is not something I personally fear.

And neither did the Apostle Paul.

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

Is it spiritual to laud his statement and rebuke mine?

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

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

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

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

Is that really wrong?

Does my motivation somehow make my desire impure?

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

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

Does it not reflect true faith?

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

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

These are questions I ask myself.

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

Maybe that’s their secret fear too.

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

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

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

These are thoughts I ponder.

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


Posted by on September 10, 2016 in Faith


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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.


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.


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


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