Who is Miranda?

Posted by Karen - October 2nd, 2011

Posted by Karen

My daughter Miranda has Fibrodysplasia Ossificans Progressiva (FOP), and I’ve blogged about that from many different angles.  Dealing with FOP is a significant  part of  life with Miranda.  However, it’s not the only part.  It’s not even the most important part.

Once, many moons ago, I blogged about the kid behind the FOP.  That was a while ago, though, so I thought it would  be fun to do that again, and tell you 12 random things about Miranda.  Things that AREN’T about FOP.  In no particular order…

1. When Miranda wakes up every morning, almost the first thing she asks me is, “What are we having for supper?”  If I tell her something she likes, she’ll run off immediately to inform her brother Owen, age 9.  If it’s something she doesn’t like, she’ll also run off to tell Owen, and her goal is to enlist him in the “me ‘n Owen” cabal.  As in, “Mom, me ‘n Owen don’t like that.  Can you make us peanut butter sandwiches instead?”

2. Ever since her 6th birthday party, Miranda’s been planning her 7th.  She regularly revises the list of who she plans to invite, and reassesses the location of choice for said party.  So far she’s considered Crash Crawly’s Adventure Place (parental shudder), a movie, Pizza Hut and 2 different swimming pools.  This process also involves consideration of what gifts she wants for her birthday.

3. Miranda really enjoys “helping” (note the quotes, ha ha) me bake things, but rarely wants to eat what we baked.  I find this frustrating.

4. Miranda can read really well for a 6.5 year old (WARNING – parental brag content following).  She picked it up partly through preschool, and partly on her own.  One of her preschool teachers told me that she (the teacher) used to show the kids flashcards with pictures and words on them, and at some point she realized Miranda was looking at the words and not the pictures.  Once, when Miranda was not quite 5, we were driving somewhere and Miranda suddenly said “Hey, that place is called Figmint.” (Figmint bar and lounge in Vancouver)  At present, Miranda likes to read a series of chapter books about fairies. 

5. Miranda likes to play Barbies.  And, every time she spies a new Barbie, she spends her time plotting and scheming about how to get the new doll.  Then, when she finally manages to get the doll, she’ll carry it around with her for a couple of days, and thereafter it ends up in her doll box with all the old Barbies.

6. My gal has a major sweet tooth.  Just like her mom, she doesn’t pass up an opportunity to eat something sweet.  This is, interestingly, unlike her brother, who is much more selective and will often turn down stuff if he’s just not hungry.  Miranda NEVER lets lack of hunger stand in the way of eating something sweet that might be on offer.

7.  Miranda loves to eat ham, especially honey ham (consistent with #6 above).  She’d eat it 3 times a day if we’d let her.  School lunches are frequently pasta with cheddar cheese and ham, or else ham sandwiches.

8. Miranda loves ocean animals, and in particular, dolphins, orcas and sea otters.  We have an annual family membership to the Vancouver Aquarium, and Miranda never tires of seeing the animals there (as well as, of course, visiting the gift shop on the way out  ;-)  ).

9. If I tell Miranda about something fun which we’re going to do later in the day or week, she’ll bring up the event at frequent intervals just to make sure it’s still on.  This drives my husband Pete and I crazy.

10. When Miranda grows up, she plans to own a dog and a cat.  Or possibly just a dog.  Or possibly a fish.

11. Miranda likes going to school, although she will vehemently deny it if asked (this comes from having a 9 year old brother, for whom it would be uncool to admit to liking school).  It’s not hard to get her out the door in the mornings, because I think she’s interested in what they’re doing at school and looks forward to seeing her friends. 

12. Miranda has a memory like an elephant.  She can remember the most unbelievably detailed stuff about events that happened in the distant past (ie, a couple of years ago – which is an eternity for a 6.5 year old).

What a great kid.  We’re so lucky to have her, and I think about that every day.

Here's Miranda posing with a plastic guide dog statue which raises funds for seeing eye dogs. She wanted to donate "a penny for the helper dogs."



3 Responses to “Who is Miranda?”

  1. Madi says:

    I’ve enjoyed getting to know your sweet Miranda. What a little doll! I saw a show called “Body Bizarre” that showcases interesting medical cases and there was one girl with FOP. I became interested in learning more and stumbled across your site.

    Your sweet photo made me wonder: Would Miranda ever be a candidate for a service dog? I know they help individuals with a range of physical conditions. Just thinking that might be an effective way to give her more independence (at least, independence from a human helper). Or would it be too much of a risk for trips or scratches or other small traumas?

  2. Karen Karen says:

    Hi Madi! I’m glad you like the blog.

    Miranda could possibly be a candidate for a service dog, and in fact many people with FOP do have them. Where we live, however, the service dog organization has a rule that the person has to be 16 years old. I have no idea why… Anyway, Miranda would have to wait a few more years before she is old enough.

  3. Madi says:

    That’s wonderful that a service dog might be a possibility in the future! I can understand the age requirement, as I know you need to be super consistent with the dog to maximize their usefulness (basically, they can untrain themselves over time if you’re not consistent.) I can see how a younger child may not be able to maintain that consistency and you could subsequently end up in a dangerous situation.
    But that could be something wonderful for her if/when she ever needs that type of support. :-)

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