Wednesday, January 27, 2016

The Power of Story, II

Most of this reflection was written many years ago and shared at a healing mass at St. Norbert parish. Tara has come a long way since then. Now that she is entering adulthood perhaps her story can offer encouragement or perspective to others.
On the morning of July 6th, 1998 I received a phone call at work from my wife Kathy. She was upset and her first words to me were “You’ll have better days.” She had just returned from our daughter Tara’s 6 month checkup with the pediatrician. Tara had been diagnosed with hydrocephalus, a condition in which the spinal fluid produced in the brain builds up pressure due to a blockage or absorption problem. Her development had begun to lag and there had been subtle signs that something was wrong with her health. Treatment for this condition typically requires surgical placement of a shunt which provides an alternate pathway for the fluid to be removed from the brain and absorbed elsewhere in the body. They scheduled Tara to have an MRI the next day at St. John’s hospital. Prepping for the MRI was a bit stressful as getting an IV into a baby’s vein can be a challenge. One of the nurses whose shift had just ended came back to assist. She said that something told her she should check on us. I noticed the last name on her badge and inquired about it as I knew one other person by that name. Turns out she was his wife. I knew her husband to be a person of particularly strong faith. She left and minutes later the phone in the hospital room rang. He was on the phone asking what the situation was. His wife had called him immediately. Knowing it may be serious he was going to get some folks in his office praying for Tara right away. God knew what we were going to go through and had begun to place people in our path to reassure us.

As soon as the MRI was finished we were quickly ushered into a room where they already had our pediatrician on the phone. He broke the news to us that Tara had a brain tumor. We needed to proceed immediately to Cardinal Glennon hospital to meet with a pediatric neurosurgeon. This was a far more serious situation. Within a few hours, we were meeting with the surgeon staring at images of the tumor on a screen. Surgery to remove the tumor was scheduled for the following day. We cried out to God in pain and anguish. We were deeply fearful and anxious for the life of our baby girl.

I remember the day of the surgery I asked one of my family members to bring a camera down to the hospital so that we could take pictures of Tara. Perhaps it would be our last day with her and we wanted to remember those moments. The surgery was delayed for hours due to the busy operating room schedule that day. It was evening before they began. The surgery lasted 9 hours. It finally ended around 3am. We nearly lost Tara that night due to blood loss. She had required several complete blood transfusions during the surgery. The neurosurgeon informed us that 40% of the tumor still remained. I will never forget the blackness of those first 3 days. Where was God in all of this? What was the point of this suffering?

I got to see Tara a few hours later in the intensive care unit. It was a difficult scene. As I recall it in my mind I can envision an image of Christ crucified in my daughter that day. She had five IV lines piercing her body, one in each hand, one in her left foot, one stitched into an artery in her groin, and one stitched into an artery in her neck. They had placed a urinary catheter. She was on a ventilator and had tubes down her throat and nose. Her face was terribly swollen and her head was wrapped in a thick white bandage. A piece of her skull had been removed to accommodate the surgery.

Tara spent 7 days in intensive care. Kathy and I took 24 hour shifts in the hospital with her. We held her in our arms and comforted her as best we could. We felt helpless. The chapel at Cardinal Glennon hospital became sacred ground to me. It was all in God’s hands. The prayers and support of family and friends were overwhelming. Never in my life have I experienced such powerful love from so many people. It was an experience of heaven in the midst of all the pain. It was humbling and inspiring to witness the love and compassion which others had for our family. It often brought me to tears.

The first bit of good news came that Tara’s tumor was not cancerous. After two weeks the surgeon felt she had recovered enough to survive another surgery to remove the rest of the tumor. The 2nd surgery also lasted 9 hours. But by now hundreds of people were praying for Tara. This time, she lost very little blood and spent just one day in the intensive care unit. A week later, Tara went home for the first time in 22 days. We hoped and prayed that Tara would not need to have a shunt now that the tumor was removed. It was 50/50. But the testing of our faith was to continue. Every other day we would drive to the hospital so that the fluid she could not absorb on her own could be drawn from her head with a syringe. It became clear that Tara needed a shunt. Surgery was scheduled and we grieved over her continued suffering.

In a 12 month span, Tara endured 10 surgeries (the tumor resections, shunt placements and revisions, and hernia repair). She also started having seizures which affected her respiratory and circulatory systems. We became regular visitors to the emergency rooms at Cardinal Glennon and St. Louis Children’s hospitals. Tara had two shunts placed that drain fluid from her brain into her abdomen. In total Tara has had 16 surgeries, the last of which was in 2010. It required hundreds of hours of occupational and physical therapy for Tara to learn to crawl, to walk, and to manage basic life tasks. Every milestone became a celebration.

Tara is now 18 and will graduate from Marquette High School in May. She is clinically brain injured which has left her with several deficits most notably memory issues. She takes medication daily to prevent seizures. But all things considered, she is a walking miracle. When doctors review her brain scans they say they would never match them to a patient of Tara’s functional level. I will never forget the intensity and trauma of Tara’s early childhood. We prayed and prayed for healing. There was no miraculous instantaneous cure, but over a period of years, Tara’s health issues improved.

Those early years were a constant reminder of what was truly important in life. It brought us into contact with wonderful and amazing individuals who care for seriously ill children. We met many parents of children who suffer from medical difficulties. It was humbling to hear the stories of others who have walked a similar path. It taught us just how fragile life is, how little we are in control, and how much God is in control. He revealed himself to us in many ways throughout Tara’s illness. I would not have chosen this road to travel had I been given a choice. And yet Tara’s life has and continues to have a positive spiritual impact on many other people. She is very active in Holy Infant youth group. She has told me that her brain injury is a gift that draws her closer to God. I was amazed to hear these words come from my teenage daughter. I do not know what the future holds for Tara, but I am confident that God has a plan for her. We may not know the plan. We may not know when the storms in our lives will subside. But God knows. His plan serves a greater purpose that we may not be able to see.

Dan Curran

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