This World; Downside Up
Earlier this week, I wrote this post about one of the humorous lessons we learn from parenting. Today’s installment is a little more serious. I need to give you a few details before I get into the actual post.
My eldest daughter, Lauren, was born 4 months premature and has a neural tube defect known as Spina Bifida which is further complicated by Hydrocephalus (water on the brain). At 1 pound 8 ounces and needing emergency surgery, she wasn’t expected to make it through her first day (or the pregnancy for that matter). She is paralyzed from the chest down and requires a wheelchair to get around. There are many complications that have required surgery since her birth some 16 years ago – 47 or 48 surgeries to date.
My post today will be about a lesson that I learned during a hospital stay following a surgery that didn’t go as expected. She was about 10 years old at the time and this was a period in my life that I was learning to stop running from God.
Tired. Driving to the hospital that is all that I can think about. Its so hard to balance the real world with the one that I will be entering in just a few minutes. The Childrens hospital is a sterile world where time weighs like an iron mountain on the backs and hearts of parents who wait. We are all waiting on a hope that seems so slippery. Like a bar of soap in the shower, it manages to spring from the hands that grasp at it too hard. Tired. Yeah, I am tired from wrestling with a hope that doesn’t cast a shadow in either of my worlds. Pulling into a parking spot, I resign myself to the fact that for the next 24 hours I will have to hold up that iron mountain so that my wife can have her shift in the real world.
Walking down the claustrophobic hallways, I reflect on the fact that its Saturday evening. People my age are at home having dinner with their healthy sons and daughters while my daughter fights through the after affects of a surgery that almost took her life. Just days before my knees had almost buckled when the doctor had come out too early from the operating room and called my wife and I into a private counseling room. There he had told us that they had inadvertently poked a hole through the main artery that goes into the heart while prepping her for surgery. They were trying to stop the bleeding but they may have to crack her chest open to save her life.
We had been fortunate. They had been able to stop the bleeding without diving into her chest cavity. Now she would need several months of healing before they could retry the surgery. I had to put that thought out of my mind and instead just focus on the here and now. At least tonight I would have a love-seat to ‘sleep’ on since Lauren had been upgraded from the Intensive Care Unit to a regular room while I was in the real world.
I take one last mental breath before walking into her room.
She is tired. She is my wife and I can tell that its been a long night and longer day for her. I ask, “How is she doing?”, while I glance over to the bed that is surrounded by machines that monitor her oxygen saturation, heart rate, breathing, blood pressure, and give her fluids. Two tubes run from her body to take away fluids. One is a catheter and the other is a chest tube that keeps the pressure from building up on her lungs and heart because her body is still trying to heal from the puncture to her artery. My daughter is a small-bodied girl lying asleep in the mix of tubes and cables. Her eyes look bruised and puffy in her sleep and her pale hands seem too fragile for the IV’s that are taped there.
“She’s been in a lot of pain”, she answers me quietly not wanting to wake Lauren. “Mostly from the chest tube. They just gave her some pain meds so that she would be comfortable and she fell asleep.”
“How about you, how did you sleep?” I already know the answer but its the type of conversations that are mandatory in the hospital world.
“Not much because Lauren didn’t want me to leave her side. Hopefully you will have a better night. At least it will be quieter in here.”
“Well, why don’t you go home and get some sleep.” It was more of a command than it was a question. “I’ve got it from here.”
I watch as Heather gathers a few things before putting on her shoes. As she readies to exit the room, she looks to Lauren and then to me, “Call me if anything happens.”
“You know I will, but it looks like its going to be a quiet night.”
“Lucky you”, and with that she slips into the hall looking for her escape into the real world.
I take the seat that she had just been sitting in and prepare for my time of bearing the load. The room feels stale and some how it carries off a muggy-cool temperature. Everything seems to scream that this is a sick place, even the painted butterflies on the ceiling seem to be fighting to escape upward away from this room. I close my eyes hoping to shut out this world but its sound drones on me even more now that it has more of my undivided attention.
Forty-five minutes pass in this manner as I try to find a way into the world of sleep where these machines and smells can’t follow me. My attempts are interrupted when one of the alarms starts to sound loudly. As I am looking over to see which one is the culprit, nurses rush into the room.
“What’s going on?”, concern coloring my question.
They are busy checking machines so they don’t look at me when they answer, “Her blood pressure has dropped too low.” Then looking at my daughter, they begin to shake her slightly, “Lauren, sweetheart, we need you to wake up. Take some big breaths for us.” During this episode her oxygen saturation has also slipped below the limit that they have set on the machine.
But I look at the blood pressure reading: 32 over 18. I am instantly converted to full panic mode. All I can do is watch as they continue to work with Lauren. I am scared.
A resident had entered at some point but I hadn’t realized it until he turned to me and said, “We need to move her back to the ICU because we are not set up down here to watch her closely enough. We don’t know what is causing her BP to fall so low but we have called her doctor and we are going to move her now.”
Machines are unplugged from the walls and allowed to go on battery backup as they pull her bed out into the hall. I follow and watch my daughter. Her eyes are so sleepy – barely open but watching. Her hair is a blond mess slightly pulled back beneath her head and her skin has a sallow glow to it. She looks as if she has visited death’s door and brought some back with her. And now it wanted to return, taking her with it.
Her bed is pulled into an ICU ward and I am allowed to stand beside her bed next to her head as they hook up the machines and pass off information.
Lauren looks at me as I take her hand in mine and she whispers, “Its Ok, Daddy.”
Her words stabbed me in the chest because I am the parent. I am supposed to comfort her. She is the one that is sick and hurting and I am daddy and I am supposed to make it all better. But I can’t!! Instead I am a scared mess.
I want to pick her up and take her away from this upside down world where little, sick girls try to comfort daddies.
Its been years since we went through that little bit of hell on earth. Lauren pulled through that night but it took several days for her to get well enough to come home… and we still don’t know why her blood pressure kept falling during that time.
One day, years later, God reminded me of that night and what Lauren said to me. And He had this to say to me, “Why do you keep telling Me its Ok?”
He has a way of making this world look Downside Up – where He is in complete control.