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Welcome to Paranoia!

04 Mar

(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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2 responses to “Welcome to Paranoia!

  1. Melanie

    March 4, 2016 at 7:41 am

    It is good to recite the times that God has sent help at just the right moment, to remember those that have walked alongside and encouraged us when our strength was gone and to give thanks for blessings received. I’m so sorry it took all those years to get a diagnosis. What a gift loving professionals are to those they serve!

    Liked by 1 person

     
    • Janet Boxx

      March 4, 2016 at 9:35 am

      Yes on both accounts! We were really blessed by both new and established relationships with medical professionals in the wake of the collision.

      Gracen was initially hospitalized an hour from home in Joplin, Missouri and transferred by ambulance to UAMS in Little Rock on New Years Eve. Our neurologist came to both Joplin and Little Rock, our neuropsychologist helped me plan how to tell Gracen of her sister’s deaths and made a house call, the developmental neurologist helped me make wise therapy decisions and then later made house calls and figured out how to get Gracen pain medication because she was released on a Sunday and the hospital pharmacy was closed and our local pharmacy was unable to fill her prescriptions because they are required by law to have a script with a pen and ink signature and all we had was the computer generated copy.

      Also, a friend contacted a local medical equipment provider who made a late night delivery of a wheel chair. Then our therapy team made evening house calls for months in order to fit us into the therapist’s schedules and because we could not transport Gracen by car because of the leg immobilizer. Honestly, they started therapy right away. Even if we could have gotten her in a car I think the rest of her injuries would have made it impossible to get services outside the home. Our PCP also made at least one house call to check on a pressure sore she developed. I was incredibly thankful for the many ways people went above and beyond to meet her needs! The doctors, nursing and support staff at both hospitals were awesome.

      David and I were simply overwhelmed by the love and support we received from our friends, family, church family, medical professionals, the first responders, and the community at large. In the midst of all the loss and fear for Gracen, all while unemployed and facing untold expenses, we recognized God’s provision through so very many people.

      And of all that’s mentioned above, there so many other ways people met immediate needs both before and after we returned home with Gracen. We felt God’s love as we pretty much stumbled through hour after hour.

      I’m even thankful for the disassociation and psychological shock I experienced from the trauma, because it enabled me to do what needed to be done in the immediate aftermath, in the exhausting and emotional months after Gracen was released from the hospital and through recovery until she moved into the dorms last fall at JBU. It lasted to a sufficient degree until I had the time necessary to face all the life changes and rest without neglecting Gracen’s needs. And that was what was most important to me.

      Liked by 1 person

       

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