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Is There Life Out There?

“I don’t need any more accidents in my life.” (From the video above).

That just resonates within.

I really don’t need any more accidents—any more tragedies in this life.

And the partial lyrics below resonate as well in the aftermath of death and this pilgrimage we are taking through degenerative disease.

IS THERE LIFE OUT THERE - Reba McEntire

". . . 
But now she's wonderin' 
What she's living for 
. . . 
She's dyin' to try something foolish 
Do something crazy 
Or just get away 
. . . 
There's a place in the sun that she's never been 
Where life is fair and time is a friend 
Would she do it the same as she did back then 
She looks out the window and wonders again 

Chorus 

Is there life out there 
So much she hasn't done 
Is there life beyond Her family and her home 
She's done what she should 
Should she do what she dares 
She doesn't want to leave 
She just wonders
if there's life out there

I’m still wondering what my purpose is.

And doing something foolish or crazy or getting away from all that’s gone before—all that’s yet to come? I can’t even imagine what that would feel like.

I would do the same as I did before, and I don’t want to leave.

I just wonder if there really is a place in the sun—if there is something more in THIS world—something that doesn’t hurt out there. . .

For me.

And I wonder if other bereaved parents, other special needs parents, want to know that too.

 
4 Comments

Posted by on April 4, 2017 in Links, Music

 

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Welcome to Paranoia!

(Originally published on Facebook 11/17/14)

letter-to-mePlease take a moment and read this blog post from themighty.com, entitled, “A Letter to the Me Who Was Terrified of Our Diagnosis”, before reading any further. (Link highlighted in red below)

A Letter to the Me Who Was Terrified of Our Diagnosis

Oh yeah! I wish I had read this in the early years, when I knew something was wrong but most people (medical professionals included) thought I was simply a paranoid, over-protective mother.

I never could have written this to myself. The many comments that minimized Gracen and Katie’s symptoms from real concerns to simple clumsiness left me second guessing myself. Having lost one child, I was hyper-sensitive to every fear, but also hyper-sensitive to over-reaction. I knew I needed to guard against my over-protective nature, yet that left me consumed with self-doubt. I was not able to see clearly. I needed someone with a more distant perspective than I could manage to encourage me to aggressively pursue answers. It took me quite awhile to find that person.

In the meantime, I developed an advance/retreat strategy. Push, push, push for answers. Gain a bit of knowledge, a fraction of ground. Push for more information. Get shot down and become disheartened. Retreat. Bury my head in the sand. Shake off concerns – ignore fears, ignore fears, ignore fears! Arggggg, can’t ignore my fears anymore – push, push, push! Repeat!

That describes the early years. Every once in a while God would send a glimpse of encouragement. I remember taking Gracen to soccer practice one afternoon, frustrated that a doctor had once again downplayed my concerns, leaving me questioning. Wondering if I was seeing something that didn’t exist. I sat down next to another mother I didn’t really know as practice began. A few minutes after practice started she turned to me and said, “What’s wrong with your daughter?” And while I cringe at the insensitive way in which the question was phrased, at that moment I was thankful because she validated what I knew to be true deep down inside and gave me the courage to push some more.

There came a time when, due to the progressive nature of the girls’ disease, I no longer had to fight to have doctors acknowledge a problem existed. However, at this point I encountered an unexpected attitude from medical professionals. There is a school of thought within the medical community that promotes the idea that the root of the problem is irrelevant. Treating the symptoms is sufficient. Weary of the battle, worried about the future and afraid to look too closely into the future, I acquiesced.

Then one day, having to find yet another neurologist, I stumbled upon Dr. Phillips, a new pediatric neurologist had arrived in NW Arkansas (actually, I think she was the only “pediatric” neurologist in the area at that time). She was a tiny sprite of a thing with a warrior’s heart. After several appointments she turned to me one day and said, “I think we need to search for a diagnosis. You need to know if a condition leads to other medical issues so that we can watch for those and not be surprised by them.” So the hunt was on — and it took years.

Dr. Phillips eventually married a fellow neurologist, and became Dr. Balmakund. When her husband began working at the same clinic, Dr. Balmakund became known as Dr. Mrs. Balmakund. She is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others; medical professional or not. She loves her patients and their families. She takes her undiagnosed cases to monthly conference calls with her peers and to medical conferences where she questions other specialists; always seeking to find another patient presenting with similar symptoms or to find that one specialist who has knowledge of a condition she is unfamiliar with. She has no ego where kids are concerned. She willingly sent us to other specialists and eventually one, who himself, was unable to provide a diagnosis, did suggest two tests that might reveal one. After jumping through a series of insurance hoops, a full fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.

Yipee, right?

Wrong!

David and I found ourselves less than prepared to hear the prognosis revealed one Spring morning at her clinic. However, Dr. Balmakund did not abandon us but set us up with a neuropsychologist to help us work through our fears and concerns and to guide us in the best way to inform all three of our daughters of the less than desirable diagnosis we’d received. Dr. B, as she is affectionately known to many of her patients, has been there for us every step of the way — has gone above and beyond with hospital visits and follow-up phone calls. She has been a gift from God and we could not be more grateful.

In fact, God has been doubly good to us as Amy Grant used to sing. Dr. Mrs. Balmakund works in a practice of like-minded professionals who have supported and encouraged us in our most difficult and darkest moments. They have shared hard truths with love and have pushed us to seek outside help we likely would have made do without. We have needed them and they’ve simply stepped up and in.

Drs. Karkos, Scott and Balmakund have done for me what the woman in this article did for herself. They have ministered to our entire family, not just their patient. In that, they are truly remarkable and have blessed us beyond measure! They are among those I think of when I hear or think of Philippians 1:3, “I thank my God upon every remembrance of you.”

These women are but a small sampling of the men and women God has surrounded and supported us with. So very many people, some who’ve played limited roles, appearing at just the right moment, and some who’ve stood in the gap for a season, and many who have walked alongside us for years — serving as the hands and feet of Christ with a word of encouragement, extending simple kindness, or doing the heavy lifting by praying us through concerns, challenges and downright dilemmas. Oh yes, I am grateful to God for His faithful provision.

Now, I think I should go back and read paragraph one!

 

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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!

11800222_955295187865735_2710100575120824341_n

 
8 Comments

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

 

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Welcome to Paranoia!

(Originally published on Facebook 11/17/14)

Please take a moment and read this blog post from themighty.com, entitled, “A Letter to the Me Who Was Terrified of Our Diagnosis”, before reading any further.

http://themighty.com/2014/11/a-letter-to-the-me-who-was-terrified-of-our-diagnosis/

Oh yeah! I wish I had read this in the early years, when I knew something was wrong but most people (medical professionals included) thought I was simply a paranoid, over-protective mother.

I never could have written this to myself. The many comments that minimized Gracen and Katie’s symptoms from real concerns to simple clumsiness left me second guessing myself. Having lost one child, I was hyper-sensitive to every fear, but also hyper-sensitive to over-reaction. I knew I needed to guard against my over-protective nature, yet that left me consumed with self-doubt. I was not able to see clearly. I needed someone with a more distant perspective than I could manage to encourage me to aggressively pursue answers. It took me quite awhile to find that person.

In the meantime, I developed an advance/retreat strategy. Push, push, push for answers. Gain a bit of knowledge, a fraction of ground. Push for more information. Get shot down and become disheartened. Retreat. Bury my head in the sand. Shake off concerns – ignore fears, ignore fears ignore fears! Arggggg, can’t ignore fears anymore – push, push, push! Repeat!

That describes the early years. Every once in a while God would send a glimpse of encouragement. I remember taking Gracen to soccer practice one afternoon, frustrated that a doctor had once again downplayed my concerns, leaving me questioning. Wondering if I was seeing something that didn’t exist. I sat down next to another mother I didn’t really know as practice began. A few minutes after practice started she turned to me and said, “What’s wrong with your daughter?” And while I cringe at the insensitive way in which the question was phrased, at that moment I was thankful because she validated what I knew to be true deep down inside and gave me the courage to push some more.

There came a point in time when, due to the progressive nature of the girls’ disease, I no longer had to fight to have doctors acknowledge a problem existed. However, at this point I encountered an unexpected attitude from medical professionals. There is a school of thought within the medical community that promotes the idea that the root of the problem is irrelevant. Treating the symptoms is sufficient. Weary of the battle, worried about the future and afraid to look too closely into the future, I acquiesced.
Then one day, having to find yet another neurologist, I stumbled upon Dr. Phillps, a new pediatric neurologist (actually, I think she was the only “pediatric” neurologist) arrived in NW Arkansas. She was a tiny sprite of a thing with a warrior’s heart. After several appointments she turned to me one day and said, “I think we need to search for a diagnosis. You need to know if a condition leads to other medical issues so that we can watch for those and not be surprised by them.” So the hunt was on – and it took years.

Dr. Phillips eventually married another neurologist, and so Dr. Phillps became Dr. Mrs. Balmakund when her husband began working at the same clinic.
Dr. Mrs. Balmakund is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others, medical or lay people. She loves her patients and their families and takes her knowledge and questions to monthly conference calls with a group of her peers and on the road to medical conferences where she questions other specialists, always seeking to find another patient presenting with similar symptoms or to find that one specialist who has knowledge of a condition she is unfamiliar with. She has no ego where kids are concerned. She willing sent us to other specialists and eventually one, who was unable to provide a diagnosis, did suggest two tests that might reveal a diagnosis. After jumping through a series of insurance hurdles, and fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.

Yippee, right? Wrong! David and I found ourselves less than prepared to hear the prognosis revealed one Spring morning at her clinic. However, Dr. Balmakund did not abandon us but set us up with a neuro-psychologist to help us work through the emotions and fears and guide us in the best ways to inform all three of our daughters.

Dr. B, as she is affectionately known to many of her patients, has been there for us every step of the way – has gone above and beyond with hospital visits and follow up phone calls. She has been our ordained gift from God and we could not be more grateful.

In fact, God has been doubly good to us as Amy Grant used to sing. Dr. Mrs. Balmakund works in a practice of like-minded professionals who have supported and encouraged us in our most difficult and darkest moments. They have shared hard truths with love and have pushed us to seek outside help we likely would have made do without. We have needed them and have often not had to ask because they’ve simply stepped up and in before we knew exactly what we needed.

Drs. Karkos, Scott and Balmakund have often played the role this woman played for herself in my life – recognizing needs within me that I was not always aware of myself. They have ministered to our entire family, not just their patient. In that, they are truly remarkable and have blessed us beyond measure! They are among those I think of when I hear or think of Philippians 1:3, “I thank my God upon every remembrance of you.”

These women are but a small sampling of the men and women God has surrounded and supported us with. So very many people, some who’ve played a very limited role, appearing at just the right moment and some who’ve stood in the gap for us for a season, and many who have walked along side us for years – serving as the hands and feet of Christ – with a word of encouragement, extending a simple kindness, or doing the heavy lifting by praying us through so many concerns and challenges and downright dilemmas. Oh yes, I am grateful to God for His faithful provision.

Now, I think I should go back and read paragraph one!

 

Tags: , , , , , , , , , , , , , , , , , ,

 
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