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Monthly Archives: March 2016

Perspective

Another great post from The Life I Didn’t Choose (thelifeididntchoose.com).  The author, a bereaved parent, addresses issues of value to every committed follower of Christ.

 

For our momentary, light distress [this passing trouble] is producing for us an eternal weight of glory [a fullness] beyond all measure [surpassing all comparisons, a transcendent splendor and an e…

(Clink on the link highlighted in red below to read the complete article.)  

Source: Perspective – thelifeididntchoose

 
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Posted by on March 5, 2016 in Adversity, Faith, Grief, Links

 

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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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God of the Day and God of the Night

This article was originally published on The Life I Didn’t Choose. Everyone will eventually experience times of darkness in life. Regardless of the cause, this post has value for every believer.

I was afraid of the dark until I was almost forty years old. My fear was rooted in scary childhood moments and even years of adult experience could not rip it from the soil of my psyche. I never co…

(Link highlighted in red below.)

Source: God of the Day and God of the Night

 
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Posted by on March 3, 2016 in Adversity, Faith, Links

 

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Notes from the Author

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“When I Fall in Love” by Susan May Warren, includes “Behind the Pages” which is found at the back of the book. Here’s what the author wants you and I to know:

“So often, in the Christian life, when things don’t turn out our as we hope or expect, we feel robbed. . . Frankly, God promises us challenges, so we shouldn’t be surprised when they happen. But how, then, do we cope? Psalm 84:5-7 offers answers:

“Blessed are those whose strength is in you, whose hearts are set on pilgrimage. As they pass through the Valley of Baka, they make it a place of springs; the autumn rains also cover it with pools. They go from strength to strength, till each appears before God in Zion.”

“Pilgrimage. The journey…through life, towards heaven. God offers us refreshment in the desert, and places of strength along the way. What if our happiness isn’t only in what is ahead of us…but in embracing the now? In enjoying the moments God has given us, even in the midst of suffering? What if we lived with a mindset of rejoicing in the strength, the springs of today…in order to bear the desert of tomorrow? Perhaps the annoying vices of our loved ones might not be so frustrating. Perhaps our faith wouldn’t seem so starved.”

**The Valley of Baka is thought to be a symbolic place meaning “a desert place”, “the valley of tears”, “the valley of weeping” or even “the valley of suffering”.


 

I don’t know about you, but that the idea that we grow in strength with each successive trial encourages me. We begin each new trial from a position of greater strength than the last trial we. We may grow physically weaker as we age, but grow spiritually stronger as our faith is refined.  James said it this way in Chapter 1 verses 3-4,

“. . . the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect (mature) and complete, lacking in nothing.” (NASB)

We may not “feel” strong, or even as if we are being strengthen. In fact, I daresay most of us feel weak, pitiful and maybe completely shattered during the fiery trials of life. But we find ourselves stronger after we’ve passed through the fire. The Holy Spirit quietly performed His supernatural work within, while our distracted and overwhelmed hearts and minds struggled to simply trust and obey.

 
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Posted by on March 3, 2016 in Books, Faith

 

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Laughing at my Nightmare

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Stumbled across this book on my library’s digital books website. This young man has SMA, a rare form of Muscular Dystrophy (think Jerry Lewis telethon). It’s different than Gracen’s ARSACS, but both fall under the MD umbrella.

He writes with no small amount of humor and a liberal use of profanity (he particularly enjoys dropping the f-bomb) about growing up and living life with a progressive, terminal illness. (Not all forms of MD are terminal).

The chapters are short, you will laugh out loud, but you will also get a glimpse of how a disabled person views themselves, their fears, their courage, life’s hurdles, and hope amid increasing dependence and diminishing abilities.

It was an educational read for me. I know how I feel, the challenges I’ve faced as a mother of a disabled child, but I can’t crawl inside Gracen’s mind and really appreciate what it’s like for her. I can only imagine and that is hard enough.

Like Gracen, this young man’s disability does not affect his intellect. The book reveals the ways in which people of all disabilities are often grouped together. The author is blunt and not always kind, but his attitudes are reflective of the larger “healthy” community and of a young man’s thoughts and attitudes as he matures. So, a parent with an autistic child may find some of what he writes mean-spirited or otherwise offensive. I hope you will recognize Shane is a young man coming of age in challenging circumstances and is simply learning how to live with his own personal reality (nightmare) using humor as his primary coping mechanism.

It’s worth the read if you have any desire to more clearly recognize some of the unique challenges the disabled community encounters.

One more disclaimer: This young man does not shy away from uncomfortable topics including human body parts, urination, and sex – all normal parts of any healthy young man’s life. If that and foul language offends you, it’s probably not the book for you.

 

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The Refiner’s Fire by Ewen Huffman

refining-silverThere was group of women in a Bible study group studying the book of Malachi. As they were studying chapter three, they came across verse three, which says: “He will sit as a refiner and purifier of silver.”

This verse puzzled the women and they wondered what this statement meant about the character and nature of God. One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study.

That week this woman called up a silversmith and made an appointment to watch him at work. She didn’t mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest to burn away all the impurities.

The woman thought about God holding us in such a hot spot – then she thought again about the verse, that he sits as a refiner and purifier of silver.
She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left even a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, “How do you know when the silver is fully refined?” He smiled at her and answered, “Oh that’s easy, when I see my image in it.”

 
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Posted by on March 1, 2016 in Faith

 

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