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.
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.