Is This Really Happening?
“In order to stop the seizures we must intubate your son and put him into a coma. Our goal is to cause his brain to flat line, having no activity.” These are the words spoken by the doctor that placed our family on the road to brokenness. All I could think was how did it come to this? Our oldest son, Justus, had been having seizures most of his life. A usual trip to the hospital meant that he would stay a couple days, and then leave with his medications being adjusted. We soon learned that this was not the usual trip.
For the most part, his seizure activity had always been managed by the medication. Over the years we had become very familiar in dealing with his one type of seizure and his one medication to control it. Although sometimes he would have multiple seizures, we had learned how to manage. Now I think of how preposterous it is for families like ours to manage these types of situations. It becomes a normal part of your life that you learn to deal with and often times don’t even think of what is sacrificed. I have a profound respect for all families that deal with a child with special needs.
Suddenly, Justus began to have multiple types of seizures and the activity was increasing every day. Once the doctors decided to admit him we knew that something was different this time but we did not realize the extent it would take us. We sat in that ICU room watching his 14-year-old body become so frail. He was having up to 20 seizures per minute and no amount of medication seemed to help.
“I am healed, I am healed in Jesus name. I am healed, I am healed in Jesus name.” Their was one type of seizure that he would have were he could not speak and it was hard to breathe but he could scribble words on paper. So he began to write healing scripture and the title to his favorite song, “Like a lion.” At this juncture it was hard to distinguish between agonizing sorrow and being proud parents. The activity continued to increase and our heartbreak became unbearable. I’ll never forget as Sara and I sat with the doctor and she explained as best she could that there was not much they could do. “Neurology is basically trial and error,” she explained. I felt numb as I watched the tears coming down Sara’s face. We both became aware that this situation was going to get much worse before it got better. As a husband and a pastor, I found myself sitting between a son and his weeping mother without words of comfort for either. I’m not really sure how to tell you what my feelings were but I know that I was thinking, is this really happening?
Like clockwork we saw upwards of 20 seizures per minute. The routine was to watch the EEG screen and coach him to breathe each time a seizure started. Once the doctors decided that no medications were able to stop the activity the decision was made to put him into coma. It became so severe that we were looking at life and death. Do you know what that will do to a parent? Did I hear that correctly? Did you say that he could die if we don’t get this under control? Have you ever cried out, oh my God?
Brokenness
Broken is defined as being violently separated into parts. Something that has become damaged, altered, or fractured. Being irregular, interrupted, or full of obstacles. Disrupted by change.
What does it mean to be broken? I asked Sara during our trial, what is the one thing you seek the most during brokenness? Her answer was hope. All days seem to be cold and cloudy without hope. Hope will give me the assurance that it will all be ok. Unfortunately, hope cannot always be found in the middle of a broken life. Brokenness brings you to a crossroad without direction. It’s like being violently kidnapped by a tsunami and being dropped in the middle of nowhere without rescue or direction. While in brokenness I could not think of proper words to speak. And honestly I wasn’t interested in conversation. You find yourself longing to cry out to God but having no comprehension of what you should say. All you can do is weep and mourn. Prayers no longer have fancy words, they are replaced with words like please and help. When you feel empty and lost you take on a beggar’s mentality. I don’t care about money, I don’t care about a big home, I don’t care about anything else, just please give me a miracle. Unless you experience brokenness it’s hard to explain, but I know that the innermost part of your being will hurt with heartbreak and sadness.