Life As an MPS 1 Adult: Mother Rejects My Right to Marry Her Daughter

When you have been seeing someone for an extended amount of time, and you finally get the courage to ask their parents permission to marry, what do you do if they decide to reject your right to marry because of your physical or mental disability?

Finding Love

Some have tried to reduce the concept of love to nothing more than neurochemical reactions in the brain, that it is just an addiction to an endorphin rush. But it goes so much further then that, especially for those with something that makes them "different" than everyone else, like a physical or mental disability. It's an end to a search for acceptance, a relief from the "puzzled" stares.

If I could place anything as my number one goal in life as a kid, it would have been "to find a girlfriend."  This is all I seemed to care about, because I had such an awareness of how "different" I was becoming everyday. For some reason I lifted the love of a girl higher than that of the love of family because in some way it was less obligatory, becoming in some sense "more real." If I could just find someone who accepted me "for me", then somehow I could finally enjoy who I was. This meant that I fell for girls, fast and often, which led to lots of rejection. The more I was rejected, the more and more I thought it was because of my disease. When I started receiving enzyme replacement therapy at 17 and my symptoms seemed to "improve", I got my first "break". Which was good at the time, but reinforced the idea that it was my disease that was preventing me from being loved. When I was forced into a wheelchair at age 22, I began to feel I was doomed to be forever alone.

I had become convinced of a social mindset that life with a disability is not really a "life" at all, it was an end to all things. I had forgotten the body's ability to adapt and thrive through such external limiting forces is a miracle in and of itself. I had let myself believe that no one could love anyone with a disability, because nature hates the weak, and society does everything it can to avoid those that bring them down. I have been extremely blessed to find someone that has broken me out of my mindset and my shell, and for the sake of privacy we shall call her Sophie.


Being in a stable and loving relationship, and the feeling of true acceptance drove those years of loneliness and rejection out of my mind. Even with the added complications the disease has brought on within this last year, we remain strong. The depth of our feelings for each other became even more apparent to us one day, as well as her family. As far as her parents were aware, we were just very good friends, until the day I was checked into the ICU in June of 2014 and was told I may not have very long. After visiting me on one of my first few days there, Sophie went home and burst into tears the moment she walked in through the door. Nothing else was mentioned until the next day when the parents asked why she would cry so intensely for "just a friend". Informing them of our deep bond was met with mixed responses, a loving hug from her father but silence from her mother.

I would find out that arguments would break out over the course of the next few weeks between the three of them over the "logic" of being in a relationship with me. While the father was not against the idea, he was still undecided. Whereas the mother however was very much against it all together. "How is he going to take care of you? Why would you throw the rest of your life away for just a few years of 'pleasure' with him? What if you have kids, who's going to help you take care of them, and if he dies, who's going to want to be with a widowed mother? I did not work this hard for my daughter to just throw her life away, I'm going to do everything I can to make sure this never happens!"  (I've also been told that the mother displayed true anxiety and "physical complications" around this time, over the idea of the relationship.) For so many years I had been so preoccupied with finding a girl that would accept me, that it completely blindsided me to hear such vehement rejection from the parents. After all, I'd always received such empathy and acceptance from other parental figures all my life. Hearing about every question the mother continued to barrage Sophie with only brought back all of my fears and questions about my role as a man. When looking at it pragmatically, it's true, why would anyone ever want to marry a disabled man who brings them no physical or monetary value whatsoever?  But is that all marriage is, what brings US value?

What made this even more confusing was knowing that both of our families shared a common ideology, and that there was a screaming contradiction in everything that was being asked. If we teach our children that the right thing to do in life is not pursue things that only encourage selfishness and arrogance, and that true love is not selfish; giving up everything you want for that of the other person. Then isn't it sheer hypocrisy to them berate your child for doing exactly that? Though the same hypocrisy could be leveraged at me, aren't I being just as selfishly hypocritical by asking Sophie to live the rest of her life taking care of me until I die, whenever that may be? How could I let my kids grow up without a father, and feel right about making her a single mother? If to bring about my happiness it means throwing her hopes and dreams out the window, aren't I being just a selfish, even if this is what she wants?

We both have the desire to marry. However, Sophie does not believe in marrying without parental blessing, and I don't want to cause her to be cut off from her family and friends if we eloped. Living together and physical intimacy outside of the marriage is a nonstarter for the both of us. In this situation I feel as if I have no power, no say, and there is nothing I can do but wait. I understand what the mother is saying, but my only response is to quote Fiddler on the Roof, "Even a poor tailor is entitled to happiness!"

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