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Living with Klinefelter Syndrome: Part 8

It was also at this conference, where I started dating a mom whose son was diagnosed in utero with Klinefelter Syndrome or 47XXY before he was born.  She was someone who had assisted me at the ASHA conference in Spring 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 during 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 NE Pennsylvania. It was important to move in with my fiancé and her two children. At that time, she had a six-year-old son and 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 to marry and have a long life together.

We married in October 2001.  We both continued our assistance in the Klinefelter community with prenatally diagnosed families and within our own 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 needs of the kids, their education, IEP meetings, and educational support for both of them.  Both she and I were still involved at national conferences and regional meetings. Both her children attended and made new friends.

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

My mother and I again chaired a national Klinefelter conference, this time in Philadelphia in July 2001, for the newly formed American Association for Klinefelter Syndrome Information and Support (AAKSIS) organization.  Though we were not married yet, 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 in 19 months before we actually got 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 then marriage.  We attended national conferences in 2003, 2004, 2005, 2006, and 2008.

Between 2009-2015, our children were in high school and had many activities that we as parents were involved and volunteered in.  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 an arm’s length, these activities took up a great deal 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 so 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 properly.  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 so 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, how I felt, and putting that into words has always been difficult.  I have not always had good success.  When angry or having an argument, I frequently did not express myself well and was more like a child having a tantrum as the anger was clouding my mind and my judgment.

Continued in Part 9: Living with Klinefelter Syndrome

Back to Part 7

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