Chapter 11 ~ A Safe Place to Land...

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. 

**authors note: there will be jumps of time as we move forward with this story. This memoir is meant to show a progression of events instead of a perfect time capsule. I will mark the year/month whenever that happens.

Happy girl at school in 1999...
Chapter 11 ~ A Safe Place to Land...

We moved to Northern Virginia the summer of 1998. We rented a townhouse in Fairfax and began a new phase in our lives. Courtney went back to Hopkins for her check-ups with neurology. We found a pediatrician that wasn’t intimidated or overwhelmed by Courtney’s medical situation and would be willing to be the conduit for all her required specialists. She was six and Jonathan was nine.

One Friday morning, I took the children to daily Mass. There was a Catholic Church one mile from where we lived. As we found a place to sit, I noticed there was children’s choir. I hadn’t seen a school attached to the church, so I was a bit confused. After Mass, I approached a group of mothers who were standing by as their children were playing tag on the grass in front of the church.

I took a deep breath and introduced myself to my future prayer partners, Kathy M., Lynne R. and Cathy B. They warmly welcomed the children and me. They all home schooled.

Another answer to prayer...amazing...

My heart jumped for joy as I realized that we may have found a church home. They talked to me and answered my questions. Their kids included Jonathan in their game. They came up to Courtney and held her hand leaning in to introduce themselves. I could not have dreamt of a better welcome! To this day I don't think they have any idea how profound that day was for me.

I was so excited that I flew home on a cloud and was totally at peace with where we were. Courtney was doing well. Jonathan was excelling at school and his behavior was much improved. We lived close to my parents and even though Dad was struggling once again with his cancer fight, I was close enough to spend time with him.

Life was good.

Kathy M told me about their Family Group and invited us to join them. Family Group was not something I was familiar with. A group of families gathered after Mass on Sunday and the parents taught the kids their religious educational classes, including preparing them for the sacraments. They would move each week traveling from home to home sharing, praying and teaching.

This sounded so much better than traditional CCD classes that we had participated in before. So I discussed it with Jerry. He said it sounded like his bible study back home. He agreed to let me investigate whether we could be a part of it.

That Fall we joined Family Group. As we settled into our new routine homeschooling Jonathan, I continued to look for a school for Courtney. After one Sunday Mass we were chatting with our Pastor Fr. G, and he told us of a dear friend whose daughter was disabled like Courtney. She attended the Key Center in Springfield, VA, one of two center schools in Fairfax County.

I thanked him for the information and the next day looked up the school. It seemed like the perfect placement for Courtney. The Key Center addressed the educational needs of the severely disabled and those who could not physically handle being mainstreamed with their peers due to fragile health. There was a school nurse on staff to handle medications and emergencies involving the more medically involved children. Courtney needed the supervision because of her seizures.

I asked Jerry to accompany me on a tour of the school. We liked what we saw. There were children there from ages five to twenty-two. Their classrooms were bright and cheery and the staff was top notch. There was Physical, Occupational, Vision and Speech therapists on staff to work with her every day. Courtney was placed in Miss Kim’s class and she thrived under her care. A new IEP (Individual Education Plan) was put in place and we began to see our girl finally progress, taking very small developmental steps but steps forward nonetheless.

Will always love that smile... Jonathan 1999...

Jerry had also made a big decision. He begun taking RCIA (Rite of Christian Initiation) classes to come into the church. He surprised me one Sunday when they had posted the information in the bulletin about the classes. He simply said "It's time." and the next month started attending.

I asked him at one point along the way, why he wanted to come into the church now after being married for almost 11 years. Being the historian he is, he answered quite simply "This institution has withstood 2000 years of abuse by the world around it and NOT changed it's base beliefs. That's saying something. I really can't put words to the rest. I just know it's what I am called to do." Jerry reminded me of my father quite often. No wasted words.

So at the Easter Vigil in 1999, with my entire extended family in attendance, Jerry came into the church. He chose the Confirmation name Thomas Aquinas. It had been my father's confirmation name. My Dad was beaming the entire night and I had a hard time trying not to cry. Later back at the house my father handed him a small, very old book.

"My mother gave this to me on my confirmation. It's Aquinas Summa Theologica. She signed it inside for me and now I have signed it to pass along to you."

Jerry was very quiet and just shook his head in thanks. It was a powerful, sweet moment watching the two men who held my heart share a moment. That book sits on my husbands bedside table to this day. And yes, he has read it once or twice.

He and my father shared something special, these two Navy men. I was all the happier for it.

We settled into a routine with the Family Group, homeschooling, Courtney's schooling and therapy. We also bought our first home, a little Cape Cod in Fairfax. It was the only one we could afford where Courtney's room and ours could be on the first floor. I needed to be close by so I could attend to her when she seized in the middle of the night.

Miss Courtney's seizures began to rear their ugly head once more though in the Fall of 1999. We were at the end of the road medically speaking. There were no more drugs to take, no more research to do. There was just surviving each one as they came. That was hard enough, believe me.

The spring of 2000 brought a very unique opportunity to our door. Our homeschooling friends Paul and Kathy M. had recently returned from a healing pilgrimage to Lourdes with their daughter. She suffered from various speech issues.

"We applied to the Knights of Malta for a spot in their yearly pilgrimage to Lourdes. It was an amazing journey. Our Lady is so good, her Son so faithful." Kathy said. "You must apply to take Courtney. God has such plans for you. You need to do this."

After praying about it for a week or two, Jerry and I decided we had to try. We filled out the paperwork and prayed to Our Blessed Lady. She needed to take this petition to her Son pronto. Our girl had no time to lose.

My parents cautioned us to pray hard and take this opportunity very seriously. "Miracles only happen if we have the faith to believe in them and I mean truly believe they are possible. You have to know in your heart that if God deemed it so, Courtney could get out of that chair and walk to you, she could see you, speak your name. If God chose to heal her in that way," my father said. "You have to go into this knowing and believing in your heart and soul that there is a miracle for you and Courtney or else it's just a nice little respite to the northern region of France."

Easter Vigil 1999 - Courtney and Grandpa...
One Saturday afternoon in February of 2000 we would find out what God would decide.

It’s just another waiting room. Breathe. You can do this. 

You can do anything for Courtney.

My internal mantra kept me from actually vomiting in the very well appointed waiting room. The beautiful, serene paintings, a soft hum of excited voices, the pleasant smiles of the staff, nothing seemed to bring me peace.

I looked at my now seven-year-old daughter with her riotous blonde curls and peaches and cream complexion sleeping soundly next to me in her hot pink wheelchair. The shocking color always made me smile. It was as bold as my girl.

I love you so very much. So peaceful. Always so peaceful.

I rubbed her chubby little hand.

Why can’t I feel that way? God help me. I know this is what we are supposed to do. Just give me the right words.

Jerry reached over and placed his calm hand on my knee, which had been shaking up and down for at least 30 minutes now. His warm smile made my heart melt. How I loved this man, through hell and high water, I loved this man.

“Mr. and Mrs. Lenaburg with Courtney,” called the tall, distinguished doctor, resplendent in his spotless white coat. “Come right this way and we will get started.”

Jerry and I pushed Courtney back through a long narrow hallway into an expansive office. There was another doctor waiting for us.

“Good Morning, welcome,” said the elder of the two physicians reaching out to shake my husbands hand. “No reason to be nervous,” he said finally taking my hand. “No shots today. It will painless I promise.”

His smile reminded me of my Grandfather Steucken, kind and strong.

Jerry and I settled Courtney between the two chairs in front of the desk while the more serious of the two began leafing through Courtney’s file.

“Ok,” said Dr. Serious. “So, how did you hear about our program?”

“Well,” said my husband “Homeschooling friends of ours took their daughter to Lourdes last May and they thought Courtney would qualify for the trip. We have wanted to take her on a healing pilgrimage to Lourdes for about a year now but we could never afford it on our own. This is our only option.”

“So tell us about Courtney’s medical condition?” said Dr. Grandpa still smiling looking down at our sleeping beauty.

“Well, when she was five weeks old she started having grand mal seizures. After extensive and exhaustive testing looking for answers, her official diagnosis is a seizure disorder of unknown origin with global developmental delay.” I said.  “She is non-verbal, cortically blind, and wheelchair bound. She's had a Nissan Wrap to control severe reflux. That's held for four years now. Her developmental age is approximately seven to nine months of age. She still seizes everyday with each one lasting anywhere from thirty seconds to sixteen minutes. She has general tonic clonic seizures, myclonic jerks and petite mal eye rolls. You name it she does it.  The doctors are astounded she has survived this long.” I had rattled this off so many times I had it down to about a forty-five second delivery.

Forty-five seconds to cover seven years of medical uncertainty, fear and tremendous heartache. It didn’t seem quite right now that I thought about it.

“Hmmm. I see here both her neurologist and her primary pediatrician have cleared her to travel. Good. How does she take her meds?” said Dr. Serious.

“Orally,” I said. “Two times a day at six and six. We will have extras with us in case something happens. I have no idea how they would formulate these in a foreign country.”

“A mother is always prepared,” said Dr. Grandpa, chuckling softly. “So why do you want to take your daughter to Lourdes?”

I looked at my daughter and tears pooled in my eyes. “I know that God can heal her. I know it. She deserves everything we can do for her and more. Medical science can do no more. It’s up to God to bring her peace.”

My voice was quivering. I couldn’t look at him. I only had eyes for my daughter.

God PLEASE heal her. PLEASE. I don’t know how much more her little body can take. I can’t lose her. 

My heart was pounding and my hands were clammy and shaking as I finally looked up at him. “This is all we know to do. Our Blessed Lady will walk with us and we will have our answers.”

He handed me a tissue and knelt beside my daughter and whispered in her ear “Courtney, your parents love you so much and so does God. You keep fighting little one. God is with you always.”

I looked over his head and saw a tear fall from my husband’s eye. It didn't seem so odd anymore these quiet displays of emotion. Since entering the church a year before, he had changed so much. The fact that he was sitting next to me of his own free will was proof of that.

I was suddenly overwhelmed with the heaviness of our life. All the hospitalizations and close calls with death just nipping at Courtney's heal. Listening to her fight to breath while her body was racked with another powerful seizure, late nights rocking her singing softly about “My Sunshine”, the medicines that robbed her mind of clarity and some function all to stop that dreaded monster, the seizure.

How much more God? How much more are you going to ask of her? Of us?

I felt like I was standing in the middle of a playground with all the popular kids running around me in circles. “Pick me! Pick me!” I yelled. “We can do this. She's sicker than that one over there. My daughter deserves this. Pick me! Pick us!”

I had as much confidence now as I did in the sixth grade. Dread began to creep into my heart. I began to prepare myself for another disappointment.

Dr. Serious piped in that they would do a basic medical exam and then they would make a decision on whether or not she would be able to make the trip. There were many parameters to consider. They had gotten a record number of applicants this year and the choices would be tough.

Jerry and I stood and shook hands with them both. We went into an adjoining examination room and watched as they listened to Court’s heart and lungs, took her pulse and blood pressure and various other functions. A few moments later they escorted us back to the larger office and asked us to wait a few moments. The door closed and we were alone.

“Do you think they’ll pick us?” I asked almost in a whisper. “I feel like we made a good case. We NEED to take her Jerry. I don’t know what else to do. She NEEDS to be in that water. I just know God will heal her. I know it here,” I held his hand over my heart.

“We’ll see,” he said softly. “Remember what we promised each other. We would go along with whatever God decided. Lourdes or no Lourdes. That’s up to Him.”

Why did the man always have to be so damn calm?

I took a deep cleansing breath and sat back down. Courtney continued to sleep despite being poked and prodded earlier. She had a 10 minute seizure in the parking garage on our way into the building. She would be out for hours.

After what seemed like an eternity but in reality was only ten minutes or so, the office door opened once again and Dr. Grandpa strolled back in. He sat behind the ginormous desk and folded his hands on top of it.

Oh No! They are going to turn us down. They are afraid of the seizures. They’re doctors for goodness sake. What’s there to be afraid of? If I can deal then sheesh you can to.

My mind was whirling a mile a minute. I was convinced it would be nothing but bad news once again.

Then the Doctor actually opened his mouth to speak.

“The board has made its decision,” he said calmly.

My breath caught in my throat and my heart dropped to my stomach. This was it. I leaned forward in my seat and waited for our fate to be decided.

“We would like to invite you and your daughter to accompany us on our healing pilgrimage to Lourdes, France in May of this Jubilee year.” His smile filled the room. “We like to take as many children as possible as long as they are able to travel. So as long as Courtney stays healthy, we should be good to go.”

I clapped my hands together and lept forward to shake his hand.

"Thank You so much. Thank you."

Jerry just sat there and smiled.

"Now we have a few things to go over. This program provides air travel and lodging including meals  for the malade (sick one) and one caregiver. I assuming that will be you Mary."

Only one of us could go? That wasn't right. That wasn't how it was supposed to go. 

"Now Jerry, you may join us as well for a discounted fee. It will be about $1500 to cover your expenses. If you decide that's something you can do, let me know and I will need to get that check about two weeks before we leave. Here is the other paperwork to fill out and mail back to us. Any questions?"

Yea I thought. How the hell are we going to come up with $1500? We had $32 in the bank three days before payday. Why would God say "yes" then "no" in the same sentence?

We thanked the doctors for their generosity and left the office. Once we hit the elevators I swung around to Jerry.

"Why did you say we would go? We don't have that kind of money. I can't ask my parents again. We can't ask your either. What were you thinking?" I said in a not so kind voice.

"I'm thinking that God has a miracle for my daughter and He will figure out how to pay for it. My job is to take a step way outside my convert comfort zone and trust that it will happen. Now let's go get a hamburger, I'm starving."

I just shook my amazed at what I had just heard. My husband believed in miracles. Huh.

Our Lady moves fast...the miracles had already begun.

***if you would like to read here...thank you***

Copyright 2011 - Mary E. Lenaburg

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