Grace Under Pressure

Ernest Hemingway wrote the words “courage is grace under pressure.”  How else can I describe yesterdays events. I saw Adam experiencing great personal pressure, yet he faced them with courage; the courage of Job.  I had previously written how we had received word and direction from Dr. Lee that Adam needed to have three more seizures in order for them to get the data they needed prior to operating.  Our hearts and spirits sunk with that news, yet we knew what had to be done.

I went off in a corner and offered a silent prayer, asking for more of the unwanted, in the form of multiple seizures to come upon our little boy. All prayers are heard and answered according to the will of the Lord; sometimes it takes years for a particular prayer to be answered. Yesterday the Lord was merciful towards our timeline.  From that point on Adam had five seizures, they started off mild and unassuming but finished with the power and terror of a Category 5 Hurricane.

We were  with the missionaries, at Adam’s bedside, carrying on a conversation. Adam was participating in the exchange when he looked over his right shoulder and told me in a quiet voice to push the button (he did not want to alarm the others), while at the same time making the motion with his hand of pushing a button… He felt a seizure coming on.  I knew what he was telling me so I immediately pushed the button which sends a signal to those who are monitoring him.  This was a huge blessing as Adam was able to tell me that a seizure was surfacing, normally we get no warning.

Adam has to be monitored in four ways 24 hours a day, 7 days a week while in the hospital. The monitoring consists of a camera, a microphone, The wires in his head,  (electronic brain wave monitoring, EEG)  and an individual in the room watching him.

The camera is very important in that it captures all of his body and facial movement during a seizure. The physical manifestation of a seizure gives clues to the doctors on which side of the brain is causing a seizure. An example would be if the seizure is originating on the left side of the brain, the individual having the seizure might turn his head to the right, raise his right arm, look to the right with his eyes, etc.  The left side of the brain controls the right side of the body.

Vocals are recorded to evaluate the speech functions of the individual during a seizure. Brain wave monitoring is correlated with the video and audio information. All this information is put together to produce an evaluation of a possible focal area in the brain or determining a hotspot on the brain that is the beginning point of a seizure.

The first two seizures Adam experienced in the afternoon were mild and he recovered quickly, however the second seizure was a little stronger than the first; they became progressively worse as the night wore on.  Adam experienced two more seizures while we had visitors that evening.  Cindy had to ask them to step outside as they began to surface.  It can be very embarrassing to be the victim of a seizure to be observed while having one and it can be difficult for the bystanders to understand what is happening.

Again Adam recovered, but not as well as before… the seizures were taking a toll on him.  His body temperature was climbing, sweat began to bead up on his skin, even though the room temperature was set at 68 degrees.  His head was experiencing extreme pain; We asked for pain medication.  The nurse when to get it; He had nausea so we asked for this medicine, again the nurse was helpful . He was in pain, and had such a difficult time telling us what he needed or what he was feeling.

When an individual goes into convulsions the body seizes, the muscles become tense, the conscious mind looses control over the body it resides in.  After having a large seizure it has been described as running a marathon, fighting a prized fight and spending a week with the Marines in boot camp, all happening in a matter of a few minutes… your body is exhausted, your muscles burn from the lactic acid that was just produced, your mind is confused as you try to grasp the world around you… nothing is making sense and you hurt.

Adam cried out that it needed to stop…meaning the seizures, they needed to stop:  the nurse was trying to get the doctor on the phone for permission to use the medicine to sedate the seizures. Adam was sweating much more by now and wanted to sit up, to allow him to cool off a little. The wires in his head caught the back of the bed and jerked him back a few inches.. he didn’t scream out, didn’t say a bad word.. only a facial expression of pain and stated “please be careful.”  He asked and wanted to know if he had met the requirements for the doctors, meaning did he meet the needed number of seizures… we didn’t know.

Adam kept his game face on, it was only Cindy and I in the room now, he laid back down on the bed as the pull on the wires hurt and he needed to rest.. just then I began to see his right eye begin to twitch and his lips to quiver.. The demon was rising from the depths of Hades and taking full reign of our boy. This time there was no mercy, his body went into full convulsions, arms, legs, neck, face, etc. Cindy quickly pushed the button again; Adam was shaking uncontrollably and there was nothing we could do.. to see your child in such pain and in such a situation and yet not be able to come to their rescue is a parents worst nightmare. We could not even hold him in our arms and tell him it would be ok because the camera had to record his body movements. Instead we sat on each side of his bed and watched.. watched in pain and horror as he shook, strained and cried out in unaudioable groanings to help him. Finally I said to him ” Adam it will be ok.. Adam come back, come back.. we’re here… Adam we’re here, come back.”  His tongue was now severely chewed up, his body exhausted, his mind fighting to find reality… as it passed, after the demon had his joy ride… Adam cried out.. “enough, enough” only we could understand him.

Cindy, took the role of mother bear and demanded that he have the medicine. The nurse complied.

Adam pushed his personal limits this night in hopes that he might have a better morning… a morning that will last the rest of his life. Courage.. What is courage?  Have you seen courage, real courage?  I have, I saw it in a courageous young man, fighting against the odds, that he might be as others are.. that he might live in a world without limitations, that he might not be judged for something he has no control over. Adam showed great courage, while exhibiting personal grace in the face of the storm.

Courage can be described as grace under pressure.  I have seen all three in one young man; Pressure, Courage and Grace. The pressure of a life changing disorder: The Courage to face it head on, yet handing it with the grace of a saint.

Adam you have so much to offer that too few see.  Thank you my son.

Adam getting a bandage change

Courage is Grace Under Pressure