7-19-17

Tonight, I am writing from a hospital room with Emily sleeping on the couch to my left and Blakely sleeping in the crib to my right. There is a steady beeping and flickering of small lights and a rhythmic hum in the walls. I can hear Blakely taking deep breaths and the crunch of her snore (it is histarical at how much she snores – I love it).

Blakely was hospitalized on Monday afternoon, because her seizures were out of control. Most of Sunday night and early Monday morning were spent holding Blakely down as she riveted on the bed.  We couldn’t get her to settle down and we couldn’t get her seizures to stop. So, we drove to the Emergency Room, and once again, watched our little girl helplessly lay on an adult size hospital bed. They placed wires on her, like little children stick super hero sickers all over their bodies.

It is always hard to see Blakely connected to all the medical equipment. It is always hard to see her monitors beep and to see her struggle. In those moments, I want to yell from my gut and take my fists and pound the equipment to pieces. I want to stand over the broken wreckage and fiercely scream, “See! There is nothing wrong with Blakely! There is nothing wrong with Blakely!” But instead, I sit and clinch my jaw and squeeze my hands and stare into space. I wait for the beeping to stop and for the doctors to smile and make a joke. I wait for the moment where the doctors say, “She is stable now,” but at the same time I am fully aware that they might say, “We are losing her.” Gosh, it makes my stomach hurt to think about the tension between those two statements and if I think about it – I will cry.

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I know in my brain that in some ways we are all sitting in this tension of life and death and that eventually the tension will break with death taking over life, but in my heart I can’t believe it. I can’t believe that anyone could ever possibly die – especially babies… especially Blakely.  When I sit in Emergency Rooms with Blakely my brain says to me, “Michael this is the way life is… it is hard… it is sad… the doctors warned you, don’t get mad, you have read Wikipedia, you know this is what happens to babies with HPE.” But my heart can’t take it and I refuse to believe it. I can’t make peace with the realness of disease, death, and dying.  These things are dirt in pure water – they don’t belong and are foreign to the molecular make up of life. Simply put, my heart says, “Michael, this is not the way it is supposed to be.”

Right now, Blakely is doing well. Blakely’s heart rate is at 126 beats per minute and her oxygen levels are at 99% with a respiratory rate of 26. She is recovering from her  wild seizure episodes on Monday and is being placed on a Ketogenic Diet. We are looking forward to see how this diet will affect Blakely’s seizures. The doctors have told us that this diet is known for significantly decreasing seizure activity and sometimes can eliminate seizures.  We are praying that Blakely’s seizures will stop. We are counting on a God who knows what it is like to be human (Jesus) – who knows what it is like to suffer and encounter evil. A God, who knows what it is like to die and rise from the dead. God is teaching me how to sit in the uncomfortable and unbearable tension of death and life and he is showing me that he is present in this tension. There is no place I would rather be than here in this room in the midst of Emily and Blakely… in the midst of the living God (even though it breaks me apart).

“There is no place I would rather be than here in your love, here in your love” – Will Reagan & United Pursuit, Set a Fire.

 

 

6 thoughts on “7-19-17

  1. Heavenly Father, Thank you for the gift of Blakely & for the inspiration of Michael’s words. I am humbled by the fact that I have lived over a half century on this earth & my testimony to You is limited, stilted……yet this precious baby, in her few short months, has been the catalyst for thousands of prayers, hours of seeking comfort in Scripture & the strengthening of faith for so very, very many. Your mercy shown to Blakely, Michael, Emily & all who love this baby has been staggering….but Lord, I boldly ask for more. I ask for a miracle as shocking & impossible as the blind regaining their sight, the lame walking & the dead being raised back to life – I plead with you to work a miracle of complete & utter wholeness and health for Blakely. Bathe all who love her in unfathomable peace in the midst of uncertainty and turmoil…..stretch every peaceful moment to hours & shorten every discomfort to milliseconds. Thank you God for your infinite love an mercy. In the name of our Redeemer and Friend, Jesus Christ.

    Michael, Emily & Blakely – thank you for your vivid portrayal of faith & trust. You have enriched my life and the lives of my girls. Nikki, Isabella & Marissa

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  2. Praying for you, sweet Blakely! You are a beautiful creation of God and have brought so many closer to our precious heavenly Father. May you be granted freedom from these seizures and a swift return to your loving home with Mom and Dad. Praying for your medical team to have profound wisdom and compassion in your treatment. Remembering your parents, extended family, and many friends who hurt when you hurt. You are loved, cherished, celebrated, and prayed for… Much love and faithful prayers, ~Amy Felt

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  3. HI Michael and Emily,

    I love that you all will be trying the keto diet and to see if it will help Blakely. We will be praying with you that it does. I am quite familiar with the diet and heard so much of it success in so many realms.

    Thanks for sharing your hearts with us Michael and letting us into your world.

    We continue to pray,
    Becky Leppard

    Liked by 1 person

  4. As I read of little Blakely tears rolled down my cheeks. I have typed and retyped this reply trying to find some words that will help. But there are none. I do know that knowing there are people praying for little Blakely brings you hope and strength. So know that I am another one of your prayer warriors. God be with you.

    Liked by 1 person

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