A Love Story

Ephesians 2:10: “For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.”

On Sunday in church, our pastor ended his sermon with a segment about being made exactly as God intended us to be and he shared this Bible verse. He tied in this verse and how we are just as God intended us to be in order to illustrate that we shouldn’t second-guess ourselves when it comes to faith and carrying out God’s will in our lives. He also highlighted the life of a young lady in our church who was born with spina bifida. This young lady hasn’t let her physical disability get in the way of her faith and her journey in life.

While I was touched by this girl’s story, I was thinking about a person closer to my heart and life: my husband. Andrew was born with a disease, a disability of sorts, and spent the majority of his youth in a battle to sustain his health and life. Some of you may know Andrew’s story but after being reminded about faith and overcoming hardships yesterday, I feel compelled to share his story (from my perspective and breadth of knowledge, of course). Get ready for a long post!

Andrew was born with an uncommon immune deficiency called common variable immunodeficiency. No one was aware of it for almost the first year of Andrew’s life because his immune system was sustained from his mother’s breast milk since she nursed him. It was when he was weaned that he began to develop sicknesses and infections, one after another. He would become so sick that he’d be hospitalized, often for weeks at a time. He endured many tests, none of which he remembers (thankfully). It was around the time that he was two years old that his immune deficiency was diagnosed and he began monthly intravenous infusions of a serum called gammaglobulin that contains antibodies. He was given a life expectancy of fifteen years. By the time he was five, his veins were used up, so he was given a port-a-cath in his chest. To make a long and complicated story short, Andrew lived a life with port-a-caths, limited activities, sicknesses, and monthly infusions until he was eighteen years old.  He encountered a big decision around the time he was fifteen when his health took a nose dive and the doctors warned that if he continued going to school and being exposed to germs, he could ultimately lose his life. Despite the warnings, Andrew chose to stay in school and continue to battle his immune deficiency.

I can’t say how thankful and blessed I am for that decision he made because it was during that time that we were simply friends who had classes together in school. I knew there was something different about Andrew and that he had a medical issue, but as a simple friend, I didn’t know the details. As our friendship blossomed, we developed feelings for each other and during this time, I learned more about Andrew’s condition from one of his friends. As a sixteen year old girl, I began to feel the enormity of caring for someone with a rare and serious medical condition. Despite the craziness I felt about having a relationship with someone so “different,” I began dating Andrew when we were sixteen years old, our junior year of high school.

Our early courtship revolved around Andrew’s deficiency and how he received treatments for it each month. By that time, his mom (a nurse) had learned how to administer the treatments and they were done at home; however, that meant that one night a month was devoted to staying at home, hooked up to an IV. Andrew surprised me with sharing his treatment experience the first time; he was afraid if he warned me ahead of time that I’d get scared and wouldn’t come to his house. And I’ll admit, he probably would’ve been right. To a girl who was extremely afraid of needles and hadn’t encountered anything medically like what Andrew experienced, I was VERY nervous and scared to witness his first treatment and then stay with him while he was hooked up to an IV. I was way out of my comfort zone, but after seeing how gracefully and nonchalantly Andrew handled the experience, I felt more at ease. After several months, it became a routine in which I’d go to his house and keep him company while he got his treatment. We’d spend our time doing homework or watching TV, often watching “The Newlywed Game” on the Game Show Network and trying to guess things about each other.

In our first year together, we fell in love. Young love, right? I suppose when a teenage relationship revolves around a serious issue like a terminal medical condition (up to that point, it basically was terminal), you figure out how you feel pretty quick and you become pretty mature in your relationship. There were never any immature issues or playing games. We were in it and we were committed. Andrew was past his life expectancy and each month was an unknown. There were times we didn’t go out and do what other average high schoolers were doing because Andrew was too tired and close to needing a treatment to boost his levels. Our high school romance was way different from what I perceived in other teenage couples around us. When everyone else was focused on college and the years after high school, I thought about life if something happened to Andrew. I focused on how life would work in college when he needed a treatment. We discussed several times what Andrew would want me to do with my young life if he passed away. What high school couple talks about that!? I also imagined a life that if we made it past college and got married, what would married life with this condition be like? Would I take over administering treatments? And what if we had kids? It was likely the condition was hereditary, so our child could be affected and possibly have it, too. It was a lot for a teenage girl to think about.

During the fall of our senior year, Andrew’s grandfather read a news article about a research study being conducted at Duke Medical Center for the condition better known as “Bubble Boy Syndrome.” Andrew’s mom decided to inquire into the study since it involved another type of immune deficiency. Andrew didn’t meet the criteria for that study but was accepted into another research study. The doctor behind the study, Dr. Rebecca Buckley, had a high success rate with increasing the immune levels of patients by giving them a research drug that jumpstarted their immune system (that’s probably overly simplified; sorry). Andrew began receiving the drug in October of our senior year (2000) and went several times for a quick infusion and to be examined. He continued taking his monthly treatments to sustain his levels in the event the research drug didn’t work. In the spring of our senior year, during what would’ve been a regular treatment, Andrew’s port-a-cath became clotted and he had to go to the hospital for them to attempt to unblock it. During this experience, I was a nervous wreck at school because I knew the procedure would be painful to Andrew, and I couldn’t be with him. It was one of my first big lessons in feeling helpless concerning someone you loved so much. The procedure was ultimately unsuccessful but his treatment was able to be given through a vein in his arm which could be accessed. I recall that the trauma of the medical staff trying to unblock his port caused his chest to become swollen and bruised. It was awful to see. The doctors said Andrew’s port would have to be removed and replaced because it was blocked beyond repair; however, the good news from Duke was that he could wait on that move because his immune levels were doing well and he could possibly NOT need another treatment! Miraculously, after that last treatment in his arm, he discontinued treatments and did well without them. Over the summer of 2001, he had his last port removed from his chest and did not have another one put in. During this time, we had been making our plans for college; both of us were going to Appalachian State University to be teachers. On the day before moving our belongings to Appalachian, we went to a check up at Duke and during that check up, Dr. Buckley deemed Andrew officially “cured” of his immune deficiency. The research drug had successfully worked to jumpstart his immune system and he was making enough antibodies to be deemed in the normal range!

After this miracle of all miracles, Andrew and I started college with the ability to put his immune deficiency behind us (in a way). We still worried about Andrew getting sick, but amazingly, he got nothing beyond a sinus infection or cold. He continued going for yearly checkups at Duke and remained healthy. We got engaged during March of 2004 (our junior year of college) and I finally began to envision a fairy tale marriage to a strong and healthy man. We got married on July 16, 2005 and have had a wonderful marriage. We’re both in education and spent our first five years of marriage teaching, traveling, buying a house, getting a dog, and living a happy life. When we decided to have a baby, we knew the issue of the immune deficiency would come up again. We’d have a baby knowing there would be a chance he/she could inherit the condition. We took precautions to tell the pediatrician we picked and we made sure to contact Dr. Buckley at Duke. Thankfully, our beautiful daughter, Ella Grace, passed her exam at Duke (when she was three months old) and was deemed completely healthy. She’s been completely healthy in her almost three years alive, so as I write this, common variable immunodeficiency doesn’t have a hold on our immediate family. Ironically, in the time that Andrew has been “cured,” his mother and maternal grandfather have both been diagnosed with immune deficiencies. Theirs are not as severe and don’t require treatments right now, but their diagnoses are proof to the link for heredity and genetics concerning this condition.

So as I give the long, though still abbreviated story, let me come full circle to yesterday and what I thought during the sermon at church. Andrew faced extreme challenges when he was growing up, and while so many youth choose to rebel or act out because of difficulties in their lives, Andrew remained constant to his faith and chose to embrace the blessings in life. Yes, he grew up and became mature quickly, but he also developed a kindness and compassion for others that drew me to him even when we were friends. When we were in high school and dating, I saw strength in Andrew beyond anything I’d ever seen in a person my age. He was caring and responsible – not the typical teenage doofus boy. He had a charisma and hadn’t merely been living his life; he was really ALIVE! He was already an incredible person and his strength and confidence were amazing. The Bible verse at the beginning of this post is a reminder that Andrew is God’s handiwork or workmanship, made exactly how God wanted him to be. God wanted him the way he was during his childhood because it served a greater purpose of requiring Andrew to recognize his blessings and to live each day to its fullest. Now that we are almost thirteen years out from Andrew’s cure, Andrew is still the same remarkable person he was in high school. His design, made specifically by God, has made him into a husband with intense love and sensitivity, a teacher with understanding and compassion, a father with a sense of responsibility yet fun and joyfulness, and a friend who is loyal, funny, and reliable. I used to fear Andrew’s past and how it must have caused him so much pain at times, and I also feared thinking about the future. But by accepting Andrew as a blessing in my life, and understanding how God had us put together long before we were even born, I’ve learned more about faith and the courage it takes to face the scary unknown. Our journey may not have started out so smooth and easy, and it won’t always stay that way, but we know that we are God’s handiwork – his masterpiece(s) – and we have the faith to follow His leading and do what He wants. We are the proof that even when things are intimidating and difficult, a leap of faith will create an abundance of love and blessings.

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One thought on “A Love Story

  1. Robin says:

    Casey, this is a beautiful testiment to Andrew’s faith and courage but also yours as well. I always said that Andrew’s “condition” was actually a blessing to our family. It caused us all to live each day to its fullest because we knew that there might not be a tomorrow.
    Also, if I could write a song for the two of you I would title it, “She loved him before she knew there was a tomorrow.” I can never thank you enough for how you loved him even when you weren’t sure what the future held. You two grew up and faced many adult decisions together very graciously while you were still very young.
    You are and always will be my daughter-in-love.

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