Epilogue 1 ~ The Boys Have Their Say...

Jonathan's Words:

Jonathan and Courtney - Nov. 2011

My sister Courtney and I have, well... a complex relationship. When she was first born, I was so excited to have a little sister I could play with, and be friends with. But then, things began to go wrong. Courtney started to have many, many seizures and I began to understand that Courtney was not a normal little sister.  Mom and Dad spent a lot of time in the hospital and visited all kinds of doctors so I spent a lot of time with family and friends for reasons I didn't always understand at the time.

Now, I have never been upset with my sister, even though I know she will never be the little sister I thought I would have.  In fact, over the years, quite the opposite has happened. I love her so much, it hurts me to think of what she has to go through when she has a seizure, especially when she stops breathing--which is really freakin terrifying. It not her fault that she is the way she is.

Our parents, on the other hand, had a much harder time from me as a child. Because Courtney demanded so much of their time, I always felt ignored. I was rather petulant and, to be honest. A brat, constantly lashing out at my parents in order to get their attention.  It wasn't until I entered counseling a year and a half ago that I started to talk about how I felt and began to understand that what I experienced was a form of "survivor's guilt" because Courtney had seizures and multiple disabilities and I didn't. I have learned that it's okay to feel that way.

After we moved to Virginia for Dad’s assignment in the Navy, I began to be homeschooled. I had never done well in public school; in fact, I punched a kid once for calling Courtney a retard. Being around my mom all the time helped to make up for feeling ignored so much when Courtney was younger. It was a great time in my life, and Courtney was always there, smiling and giggling--especially when I got into trouble.  She still smiles and giggles when I am in trouble - just like a little sister.

When I was 10, my parents and Courtney went on a pilgrimage to Lourdes, France. As Catholics, my family knew that this was a place of great healing, and we were so excited at the idea of Courtney being healed of her afflictions. However, God had different plans. I was spending time with a family in our family group, in addition to my grandparents.  When my parents called while I was at Grandpa and Grandma Green's, I was so hyped to hear what happened. But Courtney was still the same. God had chosen not to heal her. I felt so betrayed by this. I was so hopeful, I had prayed so hard, that the news that she remained as she was crushed me.

I nearly gave into despair at this point. But even after all of this sorrow, when I spoke to Grandma and Grandpa, I knew deep down that this was how it was meant to be. God had a purpose for Courtney being as she is, and my desire to have a sister who was “normal” didn’t fit into the plan. I resolved then and there never to give up on Courtney simply because she was to remain broken on the outside. I resolved to be the best big brother I could.

As I got older, I assumed more responsibility for taking care of Courtney; not like Mom and Dad care for her, but as her big brother should. I help with almost everything (except changing diapers- no way, no how!), as well as keeping an eye on her if Mom needs to go to the grocery store (my favorite thing for Mom to do) or if Mom and Dad have a date night.  Courtney loves it when I read books to her, and she always laughs at all the funny voices I make. Of course, she is my little sister, and as a little sister, she has found ways to drive me crazy. Nothing says Courtney like her kicking me as I try to put her shoes on her in her wheel chair or when she sneezes while I am feeding her. I have never stopped caring for Courtney, and even now, her laughter is enough to brighten even my crappiest day.

Courtney has taught me a lot about life. It’s often the simplest things in life that we get the most satisfaction from, like her smile when Courtney hears her big brother’s voice or hearing her giggle as I read Fox in Socks. I also learned that courage can take many forms, from defending the honor of a person that none of your friends really understands, to having the fortitude to take out a REALLY smelly diaper. I also found it amazing that one person can truly unite people who normally have nothing in common (this blog is proof of that). A strong heart and spirit can overcome any fragility; Courtney has beat every dire prediction made about her future and still carries out the vocation God has given her. Finally, I believe that God not only has a sense of humor, but He tells really good jokes. I mean, why else would Courtney laugh in her sleep so much?

My sister’s fate was hard to accept when I was little. But over the years, I have accepted her as God made her. When I see her struggling, I pray for her, and it gives me hope--hope that, when her mission is fulfilled, God calls her home, and she can shed herself of the prison she must stay in on Earth. And when I die, if I am so blessed to be with Our Lord, I hope to see her as God does - perfect, beautiful and free.

Jerry's Word's:

Daddy and his girl - 2011

By now everyone has read this story, which Mary has struggled to complete for nearly 3 years, and I am very proud of her for doing it.  My journey is a little different.   As you may have gathered, I was not from a very large family, and having children was not in my plan when I went off to Annapolis that hot, hot summer of 1983.

As Mary has pointed out, we were not a perfect couple, and we have done many bone-headed things over the years.  Two years ago, when our pastor asked us to be a mentor couple for the marriage preparation program at St Mary of Sorrows, I looked at him and said, "Seriously, Father, isn't there someone more qualified, more holy?"

He smiled back and said, "But you have so much to teach these couples."

Now I really looked at him like he was crazy and replied, "Yup, that's us...the Lenaburgs...God's perfect example of what not to do."

After chuckling, Father just said we would be hearing from someone and sure enough, we soon had our first engaged couple.

Why this little story?  Well, as we were preparing for our first meeting--the one where we layout the discussions with our engaged couple--the guide seemed to talk a lot about money, sex, and God-three things that have certainly been challenging in our life and marriage.

First sex-as Mary has said, whenever life got challenging, she turned to food and shopping for solace, and I turned to sex.  In addition to some dark corners of the internet, I started to use my wife for my needs and not for the closeness and joy the marriage bed should bring to a couple.  Our short-sighted and fearful decision to have her tubes tied at 25 came back to haunt us 10 years later when Mary had to undergo a partial hysterectomy because of a baseball sized tumor that had penetrated her uterine wall and was becoming pre-cancerous (YES, I watch way to many stinkin' doctor shows on TV...crazy huh? Considering how much I hate hospitals).  She didn't tell you that, but considering all her father went through and everything Courtney went through, hearing the word cancer associated with my wife was one of the worst moments of my life.  Although the surgery took care of the tumor, it introduced more emotional distress in our marriage which required a lot of time and prayer to overcome.  After much prayer, angst, tears, and sorrow we had a major healing in our intimate life when we attended Christopher West's seminar on Theology of the Body in 2009 as part of our formation as marriage mentors....Clearly our Pastor was not so innocent and naive as his cherubic face lead us to believe.  If you ever have a chance to go...do so, it will truly change how you think about sex and marriage in the Church.

Second, money.  Well, that has also been a tough subject for us.  Mary still busts my chops for that famous response when I was told we were having our first child, but 22 years later, I stand by what I said.  Our son is still working through his issues and deciding what he wants to do with his life.  Dad just wants him to keep a job and pay for school and gas for his truck, and his cell phone bill, and his car insurance…..

We have certainly been blessed by God and our guardian Angels, and have always been able to give Courtney the care she needs.  In addition, we have been blessed with extraordinarily generous friends and family that have supported us in times of hardship.  This was never more true than in 2007 when we conducted Courtney’s Campaign to help us stay in our home and catch up with our numerous medical bills and expenses we accumulated over the years.

FINALLY God, not because God is last in importance, but because too often God came last in our lives, or more particularly, in my life.  Unlike Mary, I was never particularly angry at God, but I sure didn't understand why our daughter was suffering.  I was raised a staunch Lutheran, and although I went to Mass with Mary through our entire relationship, I never really thought much about God until about 1998 when we got out of the Navy and settled here in Fairfax.  To be honest, I was gone so much, especially those busy years of 1996-1998 that I was too focused on work and getting stuff done--I was not contemplating my spiritual life.

SO, after settling in to our first little rental town home, I decided that it was time to complete my journey to the Catholic Faith.  I was drawn by the traditions and steadfastness of the Faith and the new friends we had made that really seemed to be trying to live a Christian life.  I had lots of questions during RCIA, but made the journey and came into the Church at Easter 1999.

Lourdes of course changed everything...WOW, I have never been surrounded by so much Catholicism in my life.  And of course after daily Mass, the Rosary, and the nightly Procession…..everyone hits the pubs for a pint!!  This is one of the reasons I tell my friends I became Catholic and not Baptist...they party better!

Seriously, that trip really changed our lives and we slowly began to accept our vocation as parents to care for our daughter as best we could.  More importantly, we finally understood that November day in 2004 that Courtney had a specific purpose too...her life was not an accident, she did not need to be fixed, and that she fit into the Kingdom of Heaven no more or less than we did.  NOW, this was not an immediate thing by any means, and there are still many, many days that I ask, "Gee God, isn't this enough for her?  Can you just end her suffering?  Call her home."  Yup, I have days like that...not as many these days because I am slowly accepting (argh, that word) that God will call her when she is done with her mission.

NOW, back to our story.  We told that first couple all of the ugliness and issues in our life and amazingly they did not run screaming out of the room.  Truth be told, they were afraid we were going to lecture them about their lives.  That was actually pretty amusing to contemplate, but no, we said, we are in no position to lecture, only give you the truth of our lives and how we moved through our version of the challenges all married couples will face.

SO, what are these truths we have learned?

First and most important, God redeems all things.  No matter what you have done, what sin you have committed, God offers forgiveness and compassion if only you are ready to accept it.

Second, God don’t make no junk.  Trite and grammatically horrible, I know, but true nonetheless.  It is amazing and somewhat humbling for Mary and I to contemplate that Courtney has probably brought more people closer to Christ and down to their knees in prayer than either Mary or I ever will.  She inspires people to pray for her and ask for her prayers as well.

Finally, life is worth living, as the great Fulton Sheen used to say.  Now, I am definitely not the most chipper, happy joy, joy person in the world, as many of you know…and I am famous for getting upset about life’s little challenges (just ask Mary) , but I can say without a doubt that my daughter has shown me the need to try and live every day to the fullest.  Something I also picked up from Mary’s Dad, along with more than a few “There I was” sea stories and some outstanding cigar recommendations.

So this has been our story, warts and all.  It is still being written as we experience the highs and lows of Courtney’s journey and try to keep up with everything life has to throw at us…like those phone calls from Jonathan that start..”Uh, Dad, please don’t be upset…”

***Epilogue #2...Click here...thank you***

Copyright 2011 ~ Mary E. Lenaburg

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