Chapter 21 ~ Making Way Through the Storm...

Over the course if the next several weeks, I will be publishing my story, as wife, mother, sister and daughter. This is the evolution of how a little girl can change the course of her mother's story, can change the course of her heart. If your new to this blog, please begin here. 

Chapter 21 ~ Making Way Through the Storm

I didn't leave my mother's side for 24 hours. I slept next to her, I cooked for her, I did my best to support her through some of the most difficult hours of her life--the first time she walked back into the house--the first time she saw his things, smelled his shirts, wrapped his robe around her--when she picked out his final suit and tie. We wept together, laughed together and talked for hours about Daddy and all their adventures together.

The next morning, the family gathered to begin planning his funeral. The boys would be his Pall Bearers. His six sons would walk him in and out of the church for the last time. Marianne and I would speak as would Jerry and Chris. I had no idea what I would say. Mom handed me his Bible and told me I would know it when I found it.

I took it home with me that night and spent hours reading it. He had marked it and written in it. I found his prayer list and smiled when I saw my daughter's name at the top of the list with a heart by it. I kept reading and praying to Dad to help me find what he needed me to say. I was reading Psalms and noticed he had one in particular marked. He had written in the side margin "I have seen this. I have lived through this 1965"

My father served in the Vietnam War from 1964-66 with the US Navy. He saw many horrors there and it formed his faith. I had seen my own storms. I had reeled back in anger like a drunken man. The Lord had brought me out of my distress and guide me to my desired haven in Lourdes. My Dad was still teaching me, even though he was gone. I would read it as his funeral.

Psalm 107: 23-32

"Those who go down to the sea in ships, 
Who do business on great waters; 
They have seen the works of the LORD, 
And His wonders in the deep. 
For He spoke and raised up a stormy wind, 
Which lifted up the waves [p]of the sea. 
They rose up to the heavens, they went down to the depths; 
Their soul melted away in their misery. 
They reeled and staggered like a drunken man, 
And were at their wits’ end. 
Then they cried to the LORD in their trouble, 
And He brought them out of their distresses. 
 He caused the storm to be still, 
So that the waves of the sea were hushed. 
Then they were glad because they were quiet, 
So He guided them to their desired haven. 
Let them give thanks to the LORD for His lovingkindness, 
And for His wonders to the sons of men! 
 Let them extol Him also in the congregation of the people, 
And praise Him at the seat of the elders."

My mother was very concerned how my father would look for his viewing.  During his last hospital stay he had fallen and had a tremendous bruise on the side of his face.  She decided on a closed casket. When we arrived at the funeral home, the director asked if she would like to see my father before the casket was closed. She agreed. When she saw my father resting in his casket, she said, "Wow he looks great, let's keep the top up!" Yup, that's my mother...

My father's wake was a typical Irish wake--packed, with friends and family coming from far and wide. Stories were told, toasts were made, and many tears were shed. I remember Mr Bogan, my fathers dear friend. They had been in law school together and our families had remained close over the years. He was tough and strong like my dad. He did not show emotion. As he stood next to my father's casket he openly weeped. I put my arm around him and just stood quietly. "He was my best friend. He was one of the finest men I have ever known. You could always count on Joe. He would be there for you whenever you needed him. His word was his bond. They don't make them like him anymore."

The funeral Mass was on Memorial Day, fitting for a war veteran. The church was packed and the music swelled as our voices joined in some of my father's favorite hymns. My father's flag draped coffin took up most of the aisle in the little country church. The piano that was being played was my Grandfather Green's. My parents had donated it to the church when Daddy got sick. It was a welcome and familiar sound.

The words my brother shared were touching. My sister and I made it through our little piece of the puzzle. My father's best friend from his childhood also spoke. Finally it was Jerry's turn. He spoke of my father's dire predictions for his life should he cross the line with his daughter and had everyone laughing. He told of his courageous battles in Vietnam and with cancer. He told of his love and respect for this man who had taught him so much. He finished with "Relieve the watch. Job well done, good and faithful servant." Then he lost it. He walked by the casket and bent to kiss it. He came to sit with me and bowed his head tears spilling onto the floor.

I just held his hand and stared at the crucifix. Daddy was home now. At peace and no longer in pain. He had carried his cross with dignity and grace. I would learn to accept this new world without him. It would take time but I knew I would get there. Acceptance was easier with my father's example.

The weeks and months that followed that day were filled with reminders that dad was still with us. Courtney's seizures went away once again. There was no explanation, they just stopped. I said a prayer of thanks to my Dad for helping out his granddaughter. I would happily accept any help the saints and angels wished to give me and my girl.

Time marched forward and Courtney continued to gain strength. In 2002 her seizures overwhelmed her. She missed several days a week at school because due to their frequency. Finally we decided to keep her home. Suffering through  five and six seizures a day lasting four to twenty-two minutes, sometimes she would stop breathing and other times she worked her way through them without difficulty. Her school was located over 45 minutes away form our home and the back and forth was exhausting both of us. Home was the safest place for her.

As I continued to research different medications and treatments for seizures, I worked very hard not to fall into the "fix it" trap that had taken so much time and emotional energy. I kept Our Lady close to me  to remind me that I was to "accept". Over time, as I prayed for guidance, I began to have that feeling again like I did in Lourdes. There was something more than just acceptance. My father had been right. I needed to keep praying and keep my heart and mind open so I could hear Him when he told me what I was missing.

There were new drugs released to the market all the time. We had tried everything the medical community had to offer when Courtney's seizures returned in the winter. Her neurology team was so wonderful. I discussed everything I found with Dr. Young and his assistants. Nothing was helping and her drug load was getting heavier. Finally I asked permission to seek alternative treatments. I would never forgive myself if I didn't at least try. He gave us his blessing. I did not pursue these things with disregard to impact they would have on my daughter. I prayed over each choice accepting the answers as they came.

We had attended a conference for parents/caregivers of brain injured children in Philadelphia at the Institutes for the Achievement of Human Potential.  The seizures were relentless and Jerry and I felt we should seek every treatment option available whether it came from traditional circles or not. Our goal was to make her life as pain free and easy as possible. After returning home and seeking out other families who had successfully tried this method, we began the new therapy protocol for Courtney that included patterning and visual therapy. We consulted with a private physical therapist as well as being in constant contact with Courtney's Neuro team.

During the patterning sessions many new acquaintances came into our home, met and worked closely with our daughter. Over the course of the next two years, two times a day, teams of four people would spend an hour working with Courtney trying to re-order her brain to allow her to move forward in development. We had seen some progress with her, especially with her vocalizing and attending when someone was speaking to her. She would follow bright lights, especially Christmas lights. Those were her favorites. Unfortunately the seizures continued.

In July of 2004, during a routine orthopedic exam Courtney was diagnosed with a 19 degree lower lumbar scoliosis. Her spine looked like an upside down question mark. We were advised to stop the patterning and seek a specialized physical therapy. It was another blow but one I hope we handled with grace. The patterning teams had been such a blessing to us and our daughter over these past two years. It would be strange to be without them. They had prayed for her and held her. They had become a part of our family and it was sad to say goodbye.

We threw a HUGE thank you/birthday picnic for all our helpers for Courtney's 11th birthday in August of 2004. It was time to move forward. Jerry and I both felt God's presence in every choice we had to make in regards to either of our children. We had continued to homeschool Jonathan and made it through middle school still on speaking terms, an absolute miracle in my humble opinion. We kept our minds open in regards to new medical interventions with Courtney. Our patience paid off in October of 2004.

During a routine check-up, Courtney's neurologist, Dr. Young presented us with new medical option to try and stem Courtney's seizures. It was called a VNS device (Vagus Nerve Stimulator) and would be surgically implanted in her chest with a wire connecting to the vagus nerve at the base of the neck. It would send an electrical impulses to the brain to try and tamper the constant electrical eruptions which caused the seizures that were robbing my girl of her best life.

After a few weeks of prayer, further research, more tests and meeting with the neurosurgeon that would be performing the procedure, we decided to go forward. The surgery date was set. November 1, 2004, All Saints Day. I would need all the saints with me to make it through this. I had started to read accounts of people who had had the procedure and the device didn't work for them. For some it had caused permanent nerve damage, and others ticks and speech issues. I was beginning to doubt our decision.

The night before the surgery, we attended the closing Mass for a Cursillo Retreat weekend that I had been on team. It had been a powerful three days filled with prayer and rest and I needed  both desperately. At the end of the Mass, Fr. Joe, our retreat spiritual advisor, asked me to bring Courtney forward. He knew she was having surgery in the morning. I was taken aback but did as he requested. Father G. our pastor came down and gave Courtney the Anointing of the Sick. As he finished the sacrament, from the pulpit Fr. Joe asked everyone to raise their hands toward Courtney and join him in prayer--500 people raised their voices to heaven once more for my girl. They prayed for protection during the procedure as well as end to her seizures.

We were as ready as we could be. Tomorrow everything would change.

***If you wish to read here...thank you***

Copyright 2011 ~ Mary E. Lenaburg

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