“Miranda, I’ll play stuffy toys with you if you play superheroes with me.” 7 year old Owen bargains with Miranda, trying to come up with an angle that will interest his 4 year old sister. Depending on her mood, she either jumps up and shouts her agreement, or else tries to bargain for something else…
Owen and Miranda play beautifully together. And, the older Miranda grows, the more things she can do that Owen likes. Our two kids enjoying each other’s company is something I’m incredibly grateful for. As for any parent of young kids, it’s great for Pete and I that our two have a way for them to entertain themselves while we keep the house running. But in the case of Miranda, with her Fibrodysplasia Ossificans Progressiva, I think it’s exceptionally valuable to her to have a close relationship with her brother.
Owen doesn’t remember a Miranda without FOP. He was too young to know the pre-diagnosis Miranda, so for him, FOP is just a feature of her life which has always been there. He knows that she has to take care, and can’t do everything kids her age do, but for him that’s simply Miranda – the sister he loves unconditionally.
I often worry about how Miranda’s social life will develop. Because of the stiff way in which she holds her body, her limited arm movement, and the fact that her head is angled slightly downward, it’s impossible for a new person to meet Miranda and not realize there’s something wrong with her. How will this affect her ability to make friends as she grows older? It’s hard to say for sure, and a lot will probably depend on her own personality, but it’s definitely a matter for concern. For this reason, any “leg up” which Miranda can get on the socialization process is invaluable… Which is where Owen comes in.
Miranda’s relationship with Owen gives her the experience of interacting with another child in a completely typical way. Owen is a gregarious, outgoing boy with lots of friends, and is very good at initiating fun types of play. Fortunately, he never hesitates to ask Miranda to play if they’re both at home and need something to do. Because of Owen, Miranda has the chance to be valued and accepted for her personality and her own sense of fun. I think this will go a long way to giving Miranda the positive grounding she’ll need, as she grows older and starts school, to know how to deal with other kids and hopefully “work around” some of the difficulties she’ll encounter.
Here’s a pic of Miranda and Owen watching TV together…
Miranda could not have asked for a better brother.
