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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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Promise Land’s Border

(Facebook Post 7/31/15)
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“The most difficult time in your life may be the border to your promised land.” This quote made me think. Really think.

I’ve spent the last year and a half (approximately) trying to live in the present following the most difficult day of my life. I know God has a plan for me, but frankly, only circumstances and my fierce love for Gracen are moving me forward and even then, only one day at a time. There are joys ahead . . . but . . . more sorrow also lies in wait. I don’t say that with a vague, abstract idea of the possibilities but from a position of knowledge, and therefore, I do not even want to think about, let alone plan for, anything beyond the immediate future.

Twenty-two days. I’m looking no further than twenty-two days down the road. And when those twenty-two days have expired, our family will be coping with yet another transition – another major transition. Right now we are simply trying to prepare for that transition, and let me tell you, it’s simply overwhelming. The plan is for Gracen to attend John Brown University at the start of the fall semester, 2015 – independently, without a care aid.

Take a minute to think about that – about what that might mean for me and what it might mean for Gracen. Don’t think about the emotional impact due to prior losses or a pre-mature empty nest, but instead try to imagine what kind of support and assistance Gracen has been receiving at home and from at least four physical and occupational therapists, not to mention the school nursing staff, aid and teachers who have come along side and made extra efforts to facilitate her success over the last year.

Is this the border of Gracen’s promised land? I hope so with all my heart but it will still be a challenging transition for my tenaciously determined warrior princess.

Is it the border of my own promised land? My perspective on that is far different. The truth is everything within rebels at the thought. I’m not entirely sure why although over-simplified pithy sayings like these may play a role:

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The idea that God has something “better” is an appealing one most of the time. It’s a very appealing idea when you lose your job or your boyfriend, or any number of common disappointments. We all want to believe that when we are rejected or overlooked that God has something better for us. And obviously, the promised land was perceived as something better, far better, than the wilderness the Israelites were wandering through. The promised land represented freedom, prosperity, home and security to the Israelites.

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However, it’s a hard sell for me to accept that the loss of my children, anticipated grandkids and progressively deteriorating health are “better” for David, Gracen and I. (Are you starting to see how offensive these pithy sayings can quickly become to the deeply wounded?)

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I feel as if we (humans in general) expect those better things referred to above to be worldly gifts. A job you enjoy more, a higher income, a man who loves you and treats you with respect, etc. However, it’s not always true that God provides a job you like better or that pays more. Sometimes the job you eventually get is not one you really enjoy, requires more time away from family and pays less than the income you had before. Still we assume worldly gifts when we hear or read one of the better than phrases, that is until it becomes apparent that a better replacement is simply not available. And then the better thing God has for you is spiritual maturity or a ministry you are now uniquely qualified for and with those come expectations from those who share your faith.

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And while I understand that the spiritual maturity that results from being conformed into the image of Christ (through suffering in this instance) is God’s ultimate plan for me – and the resulting spiritual maturity is better for me from a spiritual perspective, that knowledge makes the idea that God has a better gift for me than the children I’ve lost, or the health Gracen previously enjoyed, no more palatable to this all too human heart.

On top of that, I’m not even sure that those pithy sayings are Biblical. Maybe the idea that God has something better in store is loosely extrapolated from the story of Joseph where he tells his brothers that what they intended for evil God used for good. If not, I guess I need some help finding chapter and verse for all those feel good sayings. I dare say the children God blessed Job with following the death of those he previously had, could never replace the unique relationship Job had with the ten he lost. They might have been a balm to his hurting heart and brought new joy to his life, but they were not better than those he lost.

What the Bible actually says is far more important to me than platitudes designed to make me feel better about hurtful things. Platitudes may make me feel better for a time but ultimately lead to further pain when they fail to play out. I much prefer hanging my hopes on God’s word of truth.

I also don’t believe God took my children from me in order to give me something better. Maybe I’m splitting hairs here, but I’ve always believed my children were a gift from God and implying that they were taken in order to give me a better gift also implies that God decided His initial plan for me wasn’t quite perfect and He decided to scrap that plan for a new and better one. I do, however, believe all the events that have transpired were part of His original overall plan for my life. And I chose to believe (because the Bible tells me so) that all of this will eventually result in something good despite the fact that I’m simply not feeling it at the moment. I imagine all the eventual good may happen in the “behind the scenes” places of our lives and David, Gracen and I may be completely unaware of it until we are made like Him – and isn’t that a cheerful thought?

Having said all that, this quote: “The most difficult time in your life may be the border to your promised land.” is not a comfortable one for me. I’m not saying it might not be accurate but rather that it maybe steps on my toes a little bit.

That quote makes me think (or maybe “realize” is a more accurate word) that I am far more like the ten faithless spies sent in to scout out the promised land than I am like Joshua or Caleb. And who wants to be likened to the ten faithless spies? I’m pretty sure I’ve never heard a message preached extolling the virtues of the ten spies who were afraid to enter the promised land. But countless messages have been given regaling Joshua and Caleb’s can do attitude. Maybe, more than being likened to the ten faithless spies, this quote makes me uncomfortable because the “promised land” reflects ministry to me in some corner of my mind – probably because I can’t identify a better thing that has filled or can fill the spaces of what’s been lost.

Whatever the reason, here I stand – not the virtuous Proverbs 31 woman who has no fear of the future, but instead just a very human woman who anticipates a less than bright future, standing with feet planted firmly in the moment, resisting the hand in the middle of my back forcing me forward into a future I never wanted, never anticipated, never dreamed of or planned for.

So no, I don’t want to step foot outside the current borders of my life in order to move forward into whatever comes after Gracen heads off to college – be that my personal “promised land” or not. I know that makes me a huge disappointment to many since I’ve repeatedly heard what a testimony our family has had, or can have. Why wouldn’t I want to embrace that future? To serve God in such a manner? To help and bless others with the lessons I’ve learned? How very selfish or ungrateful of me. After all, Christ paid it all, why should less be demanded of me?

The answer is complicated and not fully fleshed out in my mind. What I can tell you is that while others look in and recognize how painful this must be for us, their imagination falls far short of the reality of the anguish we’ve experienced and continue to suffer. In addition, I have counted the cost . . . I have walked through the fiery flames of anger and felt the flood waters of fear and sorrow spill over my head and I may have survived it all thus far, but I’ve certainly not enjoyed it and it diminishes a person in ways unfathomable for the heart and mind to comprehend or even explain.

Please also take into consideration that God never promised any of us personal safety. And while God is in control, and I can trust in eternal security and that God will be with me through anything he allows to transpire in the future, I have also had to face the stark truth that God was also in control when Cole, Bethany and Katie died. His sovereign control does not shelter me or anyone else from the grief and sorrow the loss of a loved one brings.

You may think I’m borrowing trouble by worrying about Gracen’s physical safety on campus or that my perspective sounds negative but the truth is I have very real things to fear due to the current status and progressive nature of Gracen’s disease. God’s sovereign control is not a consolation for me right now because I am well aware of exactly how much God’s good plans can hurt before the good part of His plans are realized in a believer’s life.

But, regardless of how resistant I feel to the idea that the promised land lays before me, I will take that next step, and the next one, and the one after that. If Gracen serves as the catalyst for taking that next step, instead of a the super-spiritual desire to please my Lord and Savior, that’s enough for now. Something better and the promised land can wait a bit longer while we face our next big transition. And maybe, given time, a little grace and mercy, one day I will feel less resistant to the concept of stepping into my promised land – but not right now. One reluctant step at a time is sufficient for now.

 
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Posted by on October 22, 2015 in Faith, Grief

 

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Uncovering Unknown Issues of the Heart

(Facebook Post 7/26/15)
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I made a personal discovery today, or maybe God revealed it to me. It has left me feeling even more emotionally fragile than I was before. I discovered that I know a lot about God from an intellectual standpoint. I discovered that I know a lot of scripture, even if I can’t associate the Bible reference with most of them. But I also discovered that I don’t “feel” the most basic of Biblical truths; at least in regards to myself. What is this truth that has left me reeling? This truth I know in my head but not in my heart? This truth that staggered me to the very core of my being when I finally became aware of it? This is the truth that knock my feet out from under me: God loves you, Janet.

Now, I can’t count the number of times I’ve sat in sanctuaries and auditoriums and heard how “it’s not about emotional responses.” That we can’t always trust our feelings – which is why we rely on scripture. I certainly understand that argument on an intellectual level. I do. I get it and I’ve practiced it. When my heart’s been decimated, I’ve clung to the truth that my circumstances are not a reflection of God’s feelings toward me. I’ve held fast to the teaching that God is sovereign but that man has free will. I’ve believed that God doesn’t cause bad things to happen but that He does allow them to happen. I’ve trusted that He never leaves me, that He walks through the bad stuff with me, that He uses the bad stuff to refine my faith and conform me into the imagine of Christ and to somehow use that testimony to bring the lost to salvation; that I’m a tool in the Master’s hand used to bring Him glory.

But somewhere along the way my understanding has become warped. All the losses and the role disease has played in our family is all intertwined with my faith. I’m messed up. If the sole purpose of my life is to bring glory to God and enjoy him forever and if God allows me to be hurt over and over for the purpose of conforming me into Christ’s image and to bring Him glory, then we aren’t describing a God of love, we are describing a self-serving or an ego-maniacal God and that, of course, is in complete opposition to scripture.

So, I know I’ve gotten it wrong somewhere along the way. Maybe I simply accepted the easiest answer to explain God’s sovereignty because I needed an explanation, a purpose, when no real answer could be found. God rarely answers the why question, so I found one I could attribute to an overall grand design. But I can no longer cling to this idea that all this pain is for my good or that it’s justified for another’s salvation. I need to “feel” God’s love for me, not just know He loves me in my head. Otherwise, I’m left feeling as if I’m expendable for the benefit of others. That God loves others more than He loves me. That I’m little more than a means to an end and that the pain it all causes me is not of concern to God. If His purpose is simply to conform me or lead the lost to Christ, then I don’t feel individually cherished or worthy, or precious in His sight. I feel used – that I’m being conformed into a Christian Stepford Wife. I think that is why the idea that some ministry might rise from the ashes of Bethany and Katie’s deaths, from Gracen’s injuries and progressive disease, has been so repulsive to me.

The logical part of my being recognizes that God loves me but I can’t reconcile my theology and my reality. I can’t feel it in my heart – I need to experience His love for myself instead of simply reading about it in the Bible. And I don’t know how to go about it – I’m not even sure there is anything I can do about it. I need God to do it – to change my heart so that I can experience the depth, width and height of His love.

I can’t even describe how broken I am, how tired I feel. I’ve got no words to enable another to understand the prison that my brain has become. The ache, the hollowness left in my heart – the utter and complete devastation not just for what has already happened but for what is yet to come. I don’t know how many more blows I can take, because I’m not fending them off, I’m taking them on the chin.

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I am worried about sending Gracen off to college but I’ve come to realize it is something we both need. She needs to experience it and I want her to as well. I feel so selfish saying this, but I need a break. Not from Gracen – I need a break from the constant reminders of the accident. From the visceral response I have to seeing or hearing that wheelchair coming down the hall. From the things I now do for Gracen that she used to do for herself. It’s about the tasks and lost health resulting from her disease and the accident – not Gracen, herself. It’s about all the unpleasant changes that have happened to the child I love more than life itself endlessly assaulting my heart and mind.

It’s relentless. I just can’t escape it so that I can somehow work it out and live with it. Not just living without bitterness but actually continue to survive the emotional, spiritual and physical destruction. Oh to be able to escape, to flee from it all if not permanently then temporarily so that I can catch my breath and get my feet back under me. So that I can quiet the constantly striving voices in my minds. So I can find some peace. I’m so desperate for a little bit of peace!

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Posted by on October 22, 2015 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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