Posted by Karen
Of course, the purpose of this blog is to discuss all manner of stuff connected to my daughter Miranda and her Fibrodysplasia Ossificans Progressiva. As such, I usually only mention my son, Owen, in passing. I think it’s time I rectify that a bit and tell you about Owen, and how FOP affects his world.
Owen was born on January 28, 2002, which means he just turned 8 years old. Owen is tall for his age, blond like both his mom and dad at that age, and his worst health issue is a lazy eye inherited from his dad which requires him to wear corrective glasses. He loves to watch NHL games and play floor hockey, collects hockey cards, is developing into a solid reader, enjoys board games and wrestles with our cat. Owen has a friendly and outgoing disposition, and not much troubles him in life. In addition to all that, he is a terrific brother to his sister.
Here's Owen on his 8th birthday, just before his skating lesson.
I think Owen’s reaction to FOP has been the healthiest of anyone in our family. The thing is, Owen was 5 years old when Miranda’s FOP was diagnosed, so he has no memories of her from before. Because of that, he’s known as long as he can remember that Miranda has FOP and has to be extra careful not to hurt herself, that she can’t move her back and arms the way he can, and that she can’t do certain activities that he can do (such as ice skating). But, as far as he seems to be concerned, those are just features of Miranda on a par with her brown hair and the fact she likes Bugs Bunny cartoons. The result is that he treats his sister in exactly the way I would have hoped – which is to say that except when it specifically needs to be an issue, he doesn’t think about Miranda’s FOP.
Fortunately for me and my husband Pete, Owen and Miranda seem to have a very health sibling relationship. They play games together, trade hockey cards (that’s one of those “monkey see, monkey do” things), laugh at the same stories, bicker, self-righteously tell on each other for minor infractions of household rules, think poop and barf jokes are hysterical, and bargain over playing with “girl” vs. “boy” toys together. What more could any kid want in a brother? As could be expected, and in the time-honoured tradition of younger sisters, Miranda idolizes her big brother Owen. NOBODY is cooler than Owen where Miranda is concerned.
As Owen and Miranda grow older, I think he’ll always be a great support for her. That being said, Pete and I have to continue to be vigilant and ensure that Owen never has occasion to feel resentful about limitations placed on our family by FOP. Just like any other kid, he should get to play sports, do things with friends and have adventures, even when the activities are things Miranda maybe can’t do. Right now, for instance, Owen is in skating lessons though that’s something we just can’t let Miranda do. Stopping Owen from doing what his friends are doing would probably be the best way to foster frustration, which we definitely don’t want.
I’ve heard some great stories about the siblings of people with FOP. One that I like the best is about two brothers when the second, who has FOP, joined his older brother at college. Their mother knew that without being asked, the older brother would keep an eye out for the younger and help him on occasion when he needed it. She worried that her firstborn son would feel imposed upon, and she told him she was sorry he had to feel he was shouldering extra responsibility. According to the mother, her older son told her not to even think about it, because it was no burden to him – he loved his brother and wanted, of his own accord, to help his brother if or when he needed the help. As the song goes, “He ain’t heavy, he’s my brother.” 
I hope Owen will be like the brother in this story. I think he will.
Miranda and Owen at Pete's office kids' Christmas party.
