How My Family Evolved After My Wife Died of ALS

I was raised as an only child, with no concept of family and terrible social skills. Yet after my wife died, somehow I had to be a single dad. My own father was usually gone. He fought in three wars, so it was only natural that I would sign up at 17. I served twenty years. I was conservative, I always voted Republican, and I believed in God. I was stationed around the world in Guam, Japan, Korea, and the Philippines. I toured Red China and several Pacific Rim countries. I served in Germany and toured throughout Europe, including behind the Berlin Wall. I saw how other societies lived. I was exposed to the results of communism, socialism, and capitalism. I studied extensively and eventually earned an advanced degree. I met my wife during the Gulf War. She was a doctor. I listened to her stories about people when they’re stressed and when their lives are on the line. Through all these experiences, I became less conservative and more liberal. But this story is not about me. Since my wife Krissy died in 2011, I’ve been VERY concerned about bringing up my kids. I was afraid they would drop out of school, but they didn’t. I was afraid they would drop out of extra-curriculars, but they didn’t. My 15-year-old son Stephen had his steady girlfriend, and my 13-year-old daughter, Rebecca, had a girlfriend from church, the pastor’s daughter. My kids also had very supportive friends and coaches on their sports teams. Nevertheless, I was especially concerned about Rebecca, since now she no longer had a female role model in her life. This is a story about Rebecca. I remember very early in her life, my little daughter Rebecca was always playing with the boys. She loved boy things and didn’t really like attending girl scouts or doing girl things. She refused to wear dresses. During elementary school, she was a champion in her karate school, winning tournaments in Washington, Canada, and Oregon. She won her age group at nationals with an impressive round-house kick that sent her opponent smashing to the floor. I was quite proud of my tomboy. One day at McDonald’s, my little son Stephen got a toy car with his Happy Meal; Rebecca got a pink mirror. As she looked disappointed at the girl toy, I imagined I could hear her little mind thinking, “Being a girl sucks.” During middle school, Rebecca’s friend introduced her to church. Rebecca talked a lot about Jesus, got baptized as a Southern Baptist, and attended church and Bible school twice a week. She played drums and guitar on Sundays, and travelled to a Christian camp during the summers. She was popular and outgoing. Then, one night, Rebecca was caught by the police at 3 am playing basketball in her school’s gym with a couple of other girls. They found an unlocked door. Fortunately, the police filed a school report instead of a criminal report. I didn’t worry too much, because Rebecca was not being rebellious in general. Hey, we all make youthful mistakes. No big deal. Then Krissy died. I learned later that the church pastors had convinced Rebecca that ALS could be cured if only mom’s faith were strong enough. They taught her that because mom’s faith wasn’t strong enough to cure her ALS, she would be going to Hell. Now I knew I needed to concentrate on raising my kids, so I quit work at 55. I wanted us to bond more closely than ever, and I wanted to lift them out of their sadness. I took my kids and their girlfriends out to the movies often. The five of us ate together frequently in restaurants. I stayed very close to my children. That year, I wanted to avoid the sadness of a holiday without Krissy. I mean I REALLY wanted to avoid the sadness of a holiday without Krissy. So I used a chunk of the life insurance money to take us on a vacation in November over the Thanksgiving holiday. I figured that the kids would enjoy the vacation much more if they had their girlfriends around, so I paid for the five of us to visit Rome and Venice. And boy did they bond! I only left them alone a few minutes at a time, but I’m pretty sure everybody but me lost their virginity in that hotel room in Rome. They all fell madly in love, as teens will do. Shortly after we returned to the US, the pastor’s wife told me her daughter couldn’t see Rebecca anymore, because they had been caught being “romantic.” Of course, the pastor thought it both sinful and perverted that girls would be sexually involved. Personally, I thought it was weird that they got CAUGHT. I gave a short lecture on the problems of young love, but I didn’t scream or shout. Had ALS pushed me over the edge to being a liberal? When I bought a new house in another neighborhood, the school district required Rebecca to change schools. Rebecca joined JROTC. She excelled. She loved it. She dreamed of being a Naval Officer. She earned an athletic reputation by beating all the boys at basketball. I was quite proud of my gay daughter. Shortly thereafter, my young, bright, athletic and VERY beautiful Rebecca started bringing home a different girlfriend. This one was more unconventional choice, because she was a black Jamaican. This new girlfriend seemed self-absorbed and immature. Rebecca had always showed some nonconformity by refusing to wear girl’s clothes. Now, she ONLY dressed in boy’s basketball shorts and tee-shirts. She walked with big strides, nearly bow-legged. She acted like an inner city boy who thinks he’s going to be an NBA star. She started commenting about how she hated white people. She talked a lot about rape culture. She had a lot of questions about religion and politics. She became an atheist. She made a lot of remarks about male privilege. We spoke openly and frankly, and I answered her concerns as best I could. By contrast, Stephen and his girlfriend remained very conventional and showed every sign of being a lovely and devoted couple. She helped Stephen with his schoolwork and even helped him do his chores. Then one day, I took Rebecca to a JROTC summer camp, which she had been looking forward to attending for the last two years. Excited, we waited at the Farragut Academy to be assigned her room for the week. Nearly everyone was assigned a room. Then the commander announced that they had run out of rooms and the girls could not attend this year. We left quite despondent. Again, it sucked being a girl. Rebecca decided to build a canoe by cutting cedar boards into thin strips and gluing them together. I poured money into equipping a woodshop and spent hours by her side as she built the canoe. After a few months, we were both quite happy when it floated well in a nearby lake. It is beautiful. When Stephen turned 19 in college, he moved in with his girlfriend with my blessing and they’re both working hard, staying out of trouble, and they seem to be bound for success. Rebecca turned 17, cut off all her beautiful hair, and announced she wanted a mastectomy, a hysterectomy, and a phalloplasty. After some soul-searching, I realized that it was most important to keep our relationship healthy. We discussed the problems that transgender people face in life, including in the military. She decided she didn’t want to join the service. I was disappointed, but she told me “That was your dream, dad, not mine.” I knew she was right. So I tried to think from her point of view. If she truly considered herself to be a boy, then she would be horrified to wear a dress. And that was always true. Shortly thereafter, we went together before a judge and changed the name Rebecca to Christopher. Stephen and Christopher and their girlfriends and I continue to eat out together regularly. We go to the movies together from time to time. In January we’ll take a cruise to the Bahamas and scuba dive together. This is what I’m doing to keep my family strong, loving, and supportive. And in case anybody’s wondering, I’m proud of both my sons.


frankb's picture

Mike: Congrats on keeping your family together. Not so many of us could have survived with such grace. You are one admirable dude. Hang in there, brother. And again, thanks for the enormous contributions you have made to our ALS family. - - -I still think you should write that book ! ! !/thanks/Frank

sisterpain's picture

What an amazing and inspiring story! You are such an incredible father, open minded and supportive! Your family is always bound for success having you as a guide and a leader and i am sure your wife Krissy is watching you from above and feeling proud of you and her boys! Warmest regards!

Atsugi's picture

Wow. Your compliments leave me blushing, confused and embarrassed.

'One admirable dude...supportive'? My first wife would have quite a different opinion, I'm sure. :)

Thanks for your comments.

sisterpain's picture

I truly believe that your are doing the best that any parent can do to support their children. They are who they are, you cannot change their preferences and biologic disposition. All you can do is be there for them when they figure out themselves and when they do, embrace thier choice with an open mind! In my heart, i believe you are doing it!
People don;t know how they react to a certain situation until they are in it. Being as smart and wittiful as you describe Krissy, i am sure she would have done the same thing. Warm regards!

poppies's picture

Mike what a touching and powerful story. Your children are so very blessed to have you as their Dad. Krissy chose well.

momthedivalawyerhasals's picture

Now I know I am not the only one dealing with what appears to be...unending chaos and sadness. My mom was just diagnosed. We are both trial lawyers and I loved seeing her at work. Since her diagnosis (along with psychosis) she called my new husband to tell him I run around with men and will leave him penniless (in spite of her psychosis AND our family counseling - we are at the moment separated). She then called my office to tell them things (I do not know what...but I do know she thought she imagined the call), and she called me to tell me I have syphilis and it went to my 30 year old daughter's brain (obviously untrue). Reading this, I realized there is no need for my pitty party- we are ALL going through this dreaded, unsympathetic disease...and all of its gifts. My mom was drop dead gorgeous - and she is understandably distraught over losing it all, while all of us around her live our normal pretty and prosperous lives. This has taught me the true meaning of compassion and forgiveness...of my mom, myself, my husband and others. In that way, I guess we received a gift. All the best to you. I can see how much you evolved during this, so I guess that is what is in store for me, as well. Be blessed.

DreamsEnd's picture

Mike, I've read this before and continue to be touched by your parenting. Your children are lucky to have you. Guiding Rebecca had to be a challenge and I love how you two can share. I hope life brings you both love and continued support!


Atsugi's picture

[quote=DreamsEnd;bt2123]Mike, I've read this before and continue to be touched by your parenting....Sherry[/quote]

Thanks, Sherry. I appreciate that.:)

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