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 10 ~ Moving Forward…
A very ominous beginning to our three-year tour.
That first night we met our neighbors- the Gerbig’s. Jim and Charlene would become our closest friends during this time. It was a joy and a blessing to be with people who were not intimidated by Courtney or her seizures. They had two sons and one close to Jonathan’s age. I felt like we belonged for the first time, God was smiling on me.
They say the friends you make in the Navy last a lifetime. So very true. Over the next three years we would be blessed by many extraordinary friendships not only with Jim and Charlene, but with Jim and Suzanne R., Ken and Carol S., Tom and Susan W., as well as a continued friendship with Cammie and Mike W. with whom we had grown close to during our tour of duty Brunswick, Maine. We were blessed to have them in our life.
Jerry was home all of six weeks in 1996 as he served aboard the USS Enterprise. It was the most time we had ever spent apart as a family. It was a blessing and a curse. I stayed busy with the wives support groups and Courtney’s condition continued to be stable. Of course that never lasted for long. The newest hiccup arrived in the form of severe reflux that caused her to begin to loose weight.
After a series of swallow tests, an Upper GI, PET scans and MRI’s on the brain, the doctor’s explained what they had found. Due to her continued seizures and lack of oxygen during those as well as the swelling in her brain from her reaction to the ACTH, she had sustained permanent brain damage. It was shocking to hear that, but sadly, I wasn’t surprised. With all those seizures in the first four years of her life, I know in my heart that she had to have sustained some brain damage. But, nonetheless, it was difficult to hear those words said out loud. She was having trouble controlling her swallowing because her esophagus would spasm from time to time. The muscles were weak and the electricity in her brain was sending the wrong messages.
At first we handled the severe reflux with medication to help prevent further damage to the esophagus. But it got worse over time and we could no longer ignore her weight loss. So the gastroenterologist suggested surgery, a Nissen fundoplication to be exact. During this surgery they take the top 1/8 of her stomach and wrap it around the opening where the esophagus meets the tummy to help keep the opening closed. This required general anesthesia and a cut surgical down the center of her tummy. Her health was so precarious and although the surgery was not considered life threatening, if she seized while under it was a whole new ball game.
I was incredibly nervous to do this without Jerry home. During a conversation with the captain’s wife one afternoon, I expressed my trepidation. I just didn’t want anything to happen to her while he was gone. I would never forgive myself, he would never for give me. She took it as a call to action and made a Red Cross request on my behalf to have Jerry come home for the surgery. This was completely unexpected. One day he was in the middle of the Mediterranean and the next day he was sitting in the hospital waiting room with me.
I was dumbstruck. God had showed up AGAIN and held my hand through it all. My little girl’s tummy was fixed and Jerry got to be home for a whole week. That time together was so precious. I can never thank Mrs. M. enough for making that happen.
Courtney was finally able to gain weight after the surgery, which led to better seizure control. Things were back on track for a little while. She was in a special school and seemed to be trying really hard to stand and bear her body’s full weight. So we put all of our energies into that, practicing standing and even taking steps with assistance.
Courtney was happy. Her smile would light up a room. She loved kisses from her Daddy, being read to by her big brother and dancing in her Mommy’s arms to whatever country artist was playing on the radio. Garth Brooks was her favorite. She would smile ear to ear and giggle whenever she heard him sing.
|Miss Courtney in 1997|
I started to lose weight and get in shape. When he returned from sea, Jerry and I entered into marriage counseling. Jonathan loved his kindergarten and first grade class. He was a very bright little boy despite his emotional upheaval. He taught himself to read at four and was now reading chapter books at six. My Dad was in a second remission, there were new little nieces and nephews coming into the world. Things were going really well for the first time since Courtney’s birth.
By the end of the 1997 school year, Jonathan had begun to have trouble again. He was extremely bright and tested at genius level. Unfortunately the school system we were in started their gifted and talented program in the third grade and Jonathan was just finishing first grade. I was called into the principal’s office three months before the end of school. Apparently Jonathan had been not only doing his work but the young lady’s in front of him and the gentleman’s beside him. This way there was more time to chat with his buddies. He did not appreciate the teacher’s interference into his little scheme. It had been going on for some time, although it was news to me. I was told in no uncertain terms that Jonathan needed to be tested for ADD/ADHD.
So we had him tested knowing what the outcome would be. I have ADHD and am mildly dyslexic while my husband shows a few classic characteristics of ADD. For the first time in five years, Courtney was not our main concern. Jonathan leaped to the head of the line. We consulted with a physician as as well as a psychologist specializing in ADHD and didn’t like their answers – drugs. That was the only option we were presented with.
Taking the wrong drug had done irreparable damage to Courtney’s eyesight and caused permanent brain damage. While these meds were not on that level, we still didn’t want Jonathan to suffer from another bad choice. So I did some research and eventually we agreed to have him take Ritalin. The result was horrible. He lost weight and stopped sleeping. There was no noticeable change in his behavior. Finally, after a six weeks of sleepless nights I knew something had to change. There had to be another answer so we decided to take him off the Ritalin.
When the school found out he was no longer taking the meds, they threatened to put Jonathan in a special ed class for “emotional behavior” the following year. I understood their frustrations, truly I did, but I knew this would be a HUGE mistake. I knew it deep down in my mother’s heart, that place we all have that guides our choices for our kids. I began to pray fervently for an answer. One thing I had learned in this renewed relationship with Our Lord was when you pray and ask for help, it will always come in a way you least expect it.
|Best school picture ever! I love the ears…|
One afternoon, I noticed that there were several school-aged kids at the neighborhood playground during regular instructional hours. I was curious, so I went out and struck up a conversation with one of the moms. She homeschooled her three kids. I had never heard of homeschooling except in Little House on the Prairie but the idea intrigued me. That night I went to the library and did some research. I checked out every book I could find on the subject matter, all two of them. Then, I wrote a letter to the state board of education as well as the county board making inquiries on the policies and procedures regarding homeschooling.
I sat with my neighbor for two or three hours the next day with a list of questions. The more I learned about it the more I liked the sound of it. I would be in control of his education which means I could make it as challenging as it needed to be to meet his academic needs. He would be receiving his First Communion the following May. I could prepare him for that as well. I could implement a behavior mod program that would help him with his ADHD and there were playgroups and co-ops near by that would answer the dreaded “socialization” question which seemed to have everyone twisted.
I didn’t see any downside. So at the end of his first grade year, I walked a letter into the principal’s office and withdrew him from school. Jerry supported me 100 percent. We were off on a new adventure.
Looking back, that was a defining moment for our family. It charted a course that we followed for the next 10 years and I believe it saved our son from a lot of future heartache. It also healed some of the deep hurts he had been holding on to for so long. I got to know this incredibly smart and inquisitive young soul. He would push his sister’s wheelchair to the bus and help the attendant load her on. She would go off to school from 7:30 – 2:30 Monday through Friday. Jonathan had my undivided attention for the first time since Courtney came into the world. He flourished with all the attention. He finished his second and third grade years in one calendar school year.
He received his First Communion that spring and my entire family came to celebrate with us. Jerry’s parents, Godmother and sister joined us as well. The house was bursting but it was a wonderful weekend.
|A proud day for my boy…First Communion…|
The Fall arrived and fourth grade tripped him (and me) up a bit with long division. Can I tell you how much I hate long division? Then there were fractions…argh…I had not done so well with those the first time around.
We plugged into the local Catholic Homeschool support group and met another family that would be a great support to us over the years. Maria and Chuck had six children at that time. Maria was a quiet witness to me over the course of the next two years. She loved God and felt strongly about how she and Chuck should be educating their children to know and love God. I was and am in awe of her commitment to Christ. Her eldest daughter Catie was mildly mentally retarded. Courtney did not intimidate her at all. Catie loved to come and sit with Courtney, holding her hand and loving on her.
I began to slowly open my heart to God. I started to read about the saints and tried to have prayer time each day. I started to pray for the conversion of my husband and I had the children pray with me, well only Jonathan said the prayers out loud. Miss Courtney held them close to her heart. Of that I had no doubt.
I recognized for the first time, that even though Courtney was non-verbal and severely developmentally delayed, I had no idea how much she understood what was going on around her. I felt that it was so much more than she could communicate to us. Her hearing was perfect so the three of us would pray the rosary together for Jerry. The guilt and shame in regard to past choices would rear it’s ugly head from time to time, but I was making an effort to get to know God once more, really taking to Him and trying to quiet my heart long enough to listen for His counsel.
In 1997 President Clinton downsized the military, cutting drastically from all the services. Jerry got caught up in that draw down and by the spring of 1998 we knew he would be resigning from the Navy. Again, looking back, it was another situation where God was guiding our path even though we weren’t really giving Him credit for it.
Jerry was very worried about health insurance coverage for Courtney once we left the Navy. He searched for a civilian job and accepted one in Northern Virginia. While he was filling out all the paperwork to enter civilian life for the first time since the Academy, we discovered that Congress had just passed a law three months prior, that said employers/insurance companies could not discriminate against those individuals that had pre-existing conditions. We would have health insurance.
God was always looking out for His Courtney. He was faithful even if sometimes we weren’t.
Copyright 2011 – Mary E. Lenaburg
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