The Eye Cannot See What the Mind Does Not Know

It’s gonna be hard for me to put into words what our family is going through. I’m sitting here trying to figure out the best way to make you understand, to explain it and I know there is no way I can do it with English language. So why even share? I want you to feel sorry for me yes a little it feels so dark and lonely here, I want to inform you in case this happens to you- I want to prevent you from going through this hell, mostly I want you to understand that God (the burning bush die on the cross one) is still SO VERY real and working in our world.

Will you come with me, clear your mind of any prejudgment and allow THAT to be a possibility …THAT what we are going through just might be for God…for God to be seen, known, understood by maybe you?  You are that important I promise

Take a second do me the favor and try…..

In August of 2014 something very wrong started happening with our then 6 year old daughter. This sweet, brilliant, beautiful, thoughtful, quiet child began having what looked like panic attacks. She insisted something was stuck in her throat. We took her to several doctors and were told her problem was psychological. So we spent thousands of dollars seeing psychologists and psychiatrists. Until one day I showed a video of her attacks to the psychologist she’d been seeing for seven months. His eyes clouded with the sad realization that he had not really heard me, had not understood how sick our girl is.  He sent us to a neurologist- suspecting a brain tumor.

We spent a few days in the hospital having MRI, EEG and Spinal Tap…all showed us very little to explain what was overtaking our otherwise healthy daughter. We left confused and deeply worried…there is no feeling like a group of doctors telling you they basically don’t know what is wrong with your child. You can feel them starting to manage you out…not answering your calls and emails because they have nothing more for you and they don’t have the balls to say it.

Two days later we were back in the hospital…. Greta was uncontrollable….fighting for her life with “nothing wrong.”  Screaming for hours at a time as if she was being murdered by a ghost. Terrified begging for us to help her. Really there just aren’t words to describe the horror, the terror the desperation.

She ran the halls of the hospital screaming, pulling her IV out terrified while unexperienced nurses just stood there looking at her, at me… and no doctor was in sight. Finally we, my husband and I, had to take control of her …yes in the hospital filled with “help.” The only offer? A powerful sedative. NO thanks.

Three days later we left again with no answers.

AND THEN A BREAKTHROUGHT….here is how it happened.

On Tuesdays I’ve been attending a Bible study centered around the book Nehemiah – the study is focused on asking God how he wants us to serve him, what he wants for our lives. This is a question I ask God frequently, but often wanting an affirmation for my own predetermined plan.  This Tuesday I was feeling particularly discouraged, Greta had a very difficult attack the day before at a gas station of all places that left me having to lock her in the car (for both of our safety) and me having to call Chris to the gas station from work to help me control her. Talk about humbling. I met Tuesday angry with God and really just asking, why and screaming enough!!…as I drove to the study.

This is where the amazing begins… I sit down and the study begins and the topic of “praying for your children” is introduced. The study leader warns us that we are going to go through trials with our children and that we have to go to war for them…war on our knees praying for them. At this point I’m still thinking ya ya, I’ve been praying for a year and I’m still right here with my suffering child. And then our leader reads John 9!!

As he passed by, he saw a man blind from birth. And his disciples asked him, Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

Jesus goes on to restore his sight. The entire purpose of his blindness was so others could know the power of Jesus!

As I’m now in full ugly cry the woman sitting next to me (and I need to add there are about 75 women in this study and I end up next to this woman at a table of 8) holds my hand and says she wants to talk to me after the study.  She tells me that she knows my story and wants to connect me to a friend of hers that has a child with a very similar story, and that her friend is a doctor. I’m very darkly cynical at this point, I can’t tell you how many Mom’s have tried to tell me that their child’s temper tantrum is that same as my child trying to kill me or herself. Screaming a scream that numbs your hearing for hours at a time! I did not want to call another dam Mother! But I did… thank the Holy Spirit.

I spent over an hour talking to the friend/doctor – and I felt as if I was hearing our story as she told hers. She understood, she’s lived what we are living.  She suggested that we be seen for an Autoimmune disease called PANDAS. I have often wondered if Greta has PANDAS, in fact I asked the doctors about it during the first few months of this illness. My new friend explained that PANDAS is still poorly understood in the Charlotte medical community (keep in mind she is a doctor herself) and that it took her son three years to be diagnosed. However, she was able to point us to the right doctors, helped me review the tests results we’ve received to date and suggest the tests we still need to have. She armed me with information it would have taken me a year to gather on my own.

Now, we have been diagionsed, seen again in D.C. by a team that handles PANDAS cases every day- includes infectious disease and otolaryngology and we have a plan.

This is where I NEED you to know that this is GOD’S work NOT mine!

I get emails, texts, Facebook messages and calls that (believe me they keep me going) but many of them give ME the credit. I’m a “tiger mama” I’m a “warrior mama.” But honestly I’m not.

I yell at my daughter in frustration as she spits at me an tries to bit me. I stare at her blankly as I face the second attack of the day- dreaming I’m somewhere else as she is screaming and fighting for her life.

I hate her in a way that is so strange for a Mother.

I yell at doctors who don’t understand and have no answers

I don’t brush my teeth for days

I send calls to voicemail when I think the caller is going to complain about some minimal shit going on in their “hard life.”

I tune out when you tell me your problems

I hate you when I lay in bed at night

I wallow in self-pity daily

I yell at my husband over stupid things that don’t matter just because I need a punching bag

I put my kids in front of the TV and lay in bed and cry

I’m NOT a warrior I’m not strong…I’m not humble either I’d tell you if I was…strong

The answers, the direction, the strength to fight….

THIS IS JESUS

This is what Jesus does, he guides you, he directs your path, he fulfills his promises, he makes streams in the desert, he holds you, he does not forsake you.

I’m gonna share our story because that is who God made me, he made me open and honest, but please consume this story with the full knowledge that everything good in this is from God.

And everything bad in this he will use for his glory. Not because God is selfish or cocky but because he wants you, he wants to know you and he’ll use us to make that happen.

Ready and willing- I stand!

Now, read with me what is true:

Proverbs 3:5-8

5Trust in the Lord with all your heart,
and do not lean on your own understanding.
6In all your ways acknowledge him,
and he will make straight your paths.
7Be not wise in your own eyes;
fear the Lord, and turn away from evil.
8It will be healing to your fleshb
and refreshmentc to your bones.

Isaiah 43:19

Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.

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Comments

  1. 1

    linda says

    I now know that i have only seen the tiniest tip of this iceberg.
    I know it will not sink your family and God will definitely be glorified!!!
    I pray for Greta and you and Sofia and Chris, daily.
    Thank you for being so very real.

    • 2

      jckonecny says

      Linda,
      Thank you!
      Please share our story. We have to get the word out about this disease so that no other children and families have to suffer. This can be simple to treat if caught early.
      Praising God for you

  2. 3

    JEANNIE says

    I read this with tears in my eyes. We are going through this with my dauther. Thank you for sharing and giving our God the glory. I know he has this for your family and ours. He is good and all things will work for our good.

  3. 4

    Sarah Carroll says

    JC: Your willingness to be this raw with what you are going through is amazing. I am so humbled by what you are going through with Greta. I love your family and am keeping you in my thoughts and prayers. Love, Sarah

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