Monday, March 22, 2010

On Having Fragile X Siblings

On Tuesday, August 1, 2000 one of my three unaffected (by fragile X) children sent me an email. I wanted those three to articulate how they felt about having siblings with fragile X, so I sent them an email asking. My #3 son responded.

“My thoughts…I’ve always thought that I’m a better person as a result of having Clark and Philip as my brothers. They have definitely taught me to be patient. They have taught me to be more loving. Phil has taught me the true meaning of a good sense of humor. Clark has taught me to be responsible…

Having brothers with special needs has taught me to be nicer to people in general. They’ve influenced both myself and many of my friends to be kinder to and protect those that need help. I’m sure that Du (a good friend) is a better person for knowing Clark and Philip.

The negative—which really isn’t a negative—are the ‘what if?’ thoughts I’ve had through life. I remember being 13 and wondering what it would be like if Clark wasn’t mentally retarded and would instead be a high school senior with a drivers license…would he have been willing to pick me up from school or take me to the mall? Most likely. And what about Philip, would he have taken half of Adam’s time in my life or would the three of us just have hung out all the time. What if Clark was normal and married with a couple of munchkins?

I don’t feel a lot of sadness when doing this…instead I think it’s kind of fun.

More and more I think of what my relationship might be like after I die—will Clark and I go off and play golf together just as normal brothers do? Will he thank me for being understanding of him and for being good to him? Will he tell me I could have been nicer? Done more? It’s a bit of a motivator to treat him as good as I would treat Adam or one of my best friends.

Sorry for running on—I guess as you get older and move away from home, you give more thought to your relationship with your family.

Talk to you soon Mama!”

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