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Welcome to Paranoia!

22 Oct

(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!

 

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