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Living with Klinefelter Syndrome: Part 8

At this conference, I also started dating a mom whose son was diagnosed in utero with Klinefelter Syndrome, or 47XXY, before he was born.  She assisted me at the ASHA (American Speech-Language-Hearing Association) conference in the Spring of 1998 and where we had subsequent interaction at the Philadelphia, New York, and Silver Spring area support groups.

Dating at that point was fun.  I hadn’t had a serious relationship since I broke up with my college girlfriend of five years in 1998.  This mom and I dated for about six months before I proposed to her in early 2000.  She and I had a lot in common, and being a nurse, she was as interested in helping others with the condition as I was.  

In April 2000, I left my software engineering job in Westford, Massachusetts, and moved to Walnutport, Pennsylvania. It was essential to move in with my fiancé and her two children. At that time, she had a six-year-old son and a three-year-old daughter from her first marriage.  Moving into a ready-made family was something of a challenge.  I gave myself 19 months to get used to living with her and her children. Balancing my continued work in software engineering and developing as a family in the hopes of marrying and having a long life together.

We married in October 2001.  We both continued assisting the Klinefelter community with prenatally diagnosed families and within our community.  She and I organized a regional support group in the Lehigh Valley of Pennsylvania, close to where we were living.  The support group developed nicely, but unfortunately, after we moved to Northern Virginia in late 2002, the group disbanded and did not continue forward.

As I learned, marriage and having a family is a partnership.  It isn’t easy to maintain a marriage while you and your spouse are working full time and working to develop your relationship.  I married into a ready-made family.  Our relationship frequently had to take a back seat to the kids’ needs, their education, IEP meetings, and educational support for both of them.  Both she and I were still involved in national conferences and regional meetings. Both her children attended and made new friends.

I was laid off from a software testing position in the Allentown area just before our wedding.  The layoff was due in part to September 11, 2001, three weeks before our wedding.

Again, my mother and I chaired a national Klinefelter conference in Philadelphia in July 2001 for the newly formed American Association for Klinefelter Syndrome Information and Support (AAKSIS) organization.  Though we were not married, an engagement party was held in our honor as the conference ended that Sunday afternoon.

Marriage, for me, was an experience.  It was certainly something to get used to.  Even though I had moved 19 months before we married, it was still a huge adjustment.  We both still did Klinefelter support for primarily families/couples receiving a prenatal diagnosis.  We continued attending support group meetings and national conferences. Because that’s where we met and developed our friendship, relationship, and marriage.  We attended national conferences in 2003, 2004, 2005, 2006, and 2008.

Between 2009 and 2015, our children were in high school and had many activities in which we, as parents, were involved and volunteered.  From marching band to concert band to orchestra, crew, and field hockey, we were all over the place in and out of the high school almost on a daily basis.  Though still involved with Klinefelter Syndrome at arm’s length, these activities took up much of our time.

Our marriage was solidly good for the first 9 years. But then communication decreased, and my anger, which had been present for many years, really took its toll on the marriage. I was unhappy in many ways.  I wasn’t sharing my feelings, partially because I didn’t know how to express them appropriately.  Eventually, our fighting got so bad that I needed to act, and after 15 years of marriage, I moved out to separate myself from the pit of anger.  At that time, I took an Anger Management class to start working through the unbelievable anger that had caused many problems throughout my life.  I needed to work through the anger because it was ruining aspects of my life.

The damage was already done and far from being fixed.  I ultimately decided after five months of couples counseling to dissolve the marriage through divorce.  Marriage is a partnership and needs to evolve together through good communication and working at it.  I shoulder a fair amount of responsibility for the divorce. My anger issues and communication breakdown.  I had and still have some expressive issues.  Talking about my feelings and how I felt and putting that into words has always been difficult.  I have not always had success.  When angry or arguing, I frequently did not express myself well and was more like a child having a tantrum as the anger was clouding my mind and judgment.

Continued in Part 9: Living with Klinefelter Syndrome

Back to Part 7

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