Friends With FOP

Posted by Karen

We’re coming into the home stretch…  One more week, and then school begins!  Since Miranda will be starting kindergarten, it’s an especially exciting time at our house.

It’s funny; Miranda herself is pretty low key about the whole thing.  She’s been in daycare/preschool, she knows lots of the kids she’ll be at school with, and she knows how to read…  So what’s the big deal? 

Lots of times when kids start kindergarten, it’s really the parents who are more worked up about it than anyone.  Lots of tears and (to quote my blogger friend Amber at Strocel.com) handwringing.  I expect I may shed a few tears myself, but not exactly for the same reasons other parents (OK, moms, heh heh) cry. 

In our case, of course, Miranda’s Fibrodysplasia Ossificans Progressiva will accompany her to school.  When she was first diagnosed with FOP, I thought Miranda might never be able to do things other kids could.  In time, though, I learned that was wrong, and that kids with FOP can do most things other kids can – they just may have to do them a bit differently.  School is a perfect example.  Miranda will be going to school just like all the other 5 year olds around here; the difference is she’ll have an educational assistant to keep her as safe as possible, and she’ll do only certain activities in phys ed class.

The emotional bit is that there’s a small part of me which still feels like I did the week after FOP diagnosis.   So, when my girl sets out to accomplish a “normal” thing, it’s a BIG DEAL.  I feel immensely glad and thankful that people like teachers, the school principal, etc, are going out of their way to make it work.  Other moms are crying because, “my baby’s got so big and here she is going to school, boo hoo hoo!”, and I’m crying because “my special daughter is having the chance to do what everyone else is doing, wah wah wah!”  I suppose that may sound silly, but…  It’s how I feel.

There’s another thing too…  As a rule, the members of my husband’s extended family and my own as well have done very well at school.  Post-secondary education is more the norm than the exception, and there are several advanced and professional degrees too.  Since FOP doesn’t affect the mind, there should be no reason why Miranda can’t follow in her families’ footsteps.  She’s already showing signs of solid intelligence – as I already mentioned, Miranda can read at close to a grade 1 level, and she hasn’t yet begun kindergarten (brag brag!).  Every parent wants his or her child to excel, and I figure that academics is Miranda’s best bet for excellence, though of course I’ll be thrilled with whatever her best efforts turn out to be.  In any event, some of those tears I’ll be crying will be about joyful anticipation.  I think school will really be Miranda’s “thing”.

Smarty-pants Miranda wearing her sneaky "I'm planning mischief" face.

Just one more week to go…

Last gasp of summer, washing the car with big brother Owen... And soaking wet!