Sometimes I wonder what other people think life is like with a child who has Fibrodysplasia Ossificans Progressiva. Of course, the purpose of this blog and website is to focus on FOP, and how it affects Miranda and her friend Erin, and Suzanne and I both try our best to convey a sense of the experience. However, the fact that Suzanne and I operate this website doesn’t mean either of us wanders around with FOP on the brain 24 hours per day… Far from it.
OK, let me backtrack – I shouldn’t speak for Suzanne, since she’s more than capable of speaking for herself. As for me, well, I like to quote the words of another FOP mom, a very wise woman raising a teenager with FOP. That intelligent mother stated once that FOP is only a part of her child’s life, and a peripheral part at that.
When Miranda was first diagosed with FOP, I did think and worry about FOP constantly. Phrases like “bone morphogenic protein”, “risk of severe scoliosis” and “fused jaw” (extra scary one there) sat on my brain like lead weights, making it nearly impossible to think about anything else. My husband Pete had that problem too. However, eventually we started to build up “emotional calluses” to all the difficult parts of FOP. Bit by bit, we found we were able to start thinking like normal people again. That was a big relief, because it’s impossible to lead anything like a normal life with a brain clogged up by only one issue.
For Pete and I, FOP is always on our minds to some extent, because in caring for Miranda, we have to think about the ways in which her life experiences need to be modified. However, beyond that concern (and even that becomes second nature), FOP usually fades very much into the background in our interactions with our little sweetie. Childhood FOP doesn’t generally require multiple hospitalizations, or time spent in sickbed, or daily medical treatment, so it’s possible for Miranda to have a pretty darn good quality of life.
Apart from FOP, Miranda is so much like any other 4 year old. I’d like to tell you a bit about her…
When I think of Miranda, the first thing that comes to mind is that she’s ALWAYS clutching one or more toys. Some days it’s her stuffy toy “Pup the Dog”, some days it’s the nightingale bird from her Little People zoo, some days it’s her little red plastic tree frog, and recently it’s been a little plastic lizard covered with blue spots. These toys go everywhere with her, and she almost never loses any of them (thank goodness for that, otherwise I’m sure there would be many tears)…
Another thing about Miranda is that she’s very bossy – “MOMMY, GET ME MILK!”, she bellows, or else tells people what comments she wants them to say in certain situations. (“Owen, when I say to move your dolphin toy over there, say ’OK, Miranda, that sounds great.’”) We’re working hard on instilling a bit more politeness in our little despot
Miranda also comes out with lots of interesting remarks, and she seems to have a memory like an elephant – she remembers things that happened quite a long time ago, for such a little person. I’m often astounded. Right out of the blue, she’ll mention something someone did or said several months ago, and ask about it. For instance: “Mommy, why was that lady reading a Harry Potter book on the ferry boat? I bet she bought hers at Costco like you did.” (that event happened back in August of 2007!!) Her great memory extends also to details about animals and dinosaurs. She knows the names of a LOT of dinosaurs (that’s my girl, ha!), and can describe what they all look like. T Rex is her all-time favourite, and she wonders why some books show young T Rexes with feathers, which prompts a discussion about how dinosaurs evolved into birds… She also really enjoys playing guessing games with her brother, where one of them thinks of an animal, and the other has to ask questions about the animal until they figure out what it is.
Miranda loves to eat sweets, and we despair of getting vegetables into her. If we let her, she’d live on Oreo cookies and Rice Krispie squares (sigh). Every time we cook vegetables, we diligently place them on her plate. She looks at the item like it’s an offensive piece of garbage, and INSISTS that we take it away or she’s not eating (or, alternatively, she pushes it aside and doesn’t put a single morsel of it in her mouth). Thank goodness Miranda loves her dairy - at least she gets a lot of vitamins through milk…
Another thing which comes to mind is that Miranda loves to wear dresses. Often she asks to wear a dress around the house, so I just pop one on over top of her T-shirt and pants (and she’s perfectly fine with that). Miranda will tell you that wearing a dress makes her a princess. She likes Cinderella, but is quite partial to Briar Rose, aka “Sleeping Beauty”. For Miranda, anyone who wears a dress is a princess. For a while there she was confused about the difference between princesses and brides, but I think she’s figured that out now.
Miranda brings just a whole tonne of fun, entertainment, and love to our lives. Yes, we wish she didn’t have FOP, but would we ever trade this great kid in for another? Do we wish we had some other kid who doesn’t have FOP? Do we wander around thinking about FOP all the time, and forget to enjoy our amazing girl? NOT ON YOUR LIFE!