That's my girl -- up high in a prep stunt at the cheer clinic.  She was scared and so proud of herself that night.  Normally, she is in the spotter in a stunt so when the high school girlsoffered to let her be the flyer, she jumped at the chance.

Well, not literally jumped.  See, that seems to be our problem lately and deep in my gut, I feel like its just the beginning of a larger issue to deal with.  Her feet and legs. 

Its not a secret that Grace has Marfan Syndrome.  She knows that she has to take medicine every morning to keep her heart healthy. She wears her glasses so that she can see correctly.  And she is clearly one of the tallest kids in 2nd grade - in fact, she towers over most of her 3rd grade friends. 

But now things are starting to pop up that she knows makes her different than other kids.  Tumbling for example - I never pushed it when she was little because gymnastics is just something that Marfs cannot do with their loose joints and long limbs.  So cartwheels at the cheer clinic -- not so pretty like the other girls.  A toe touch jump? Forget about it.  She just cannot jump that way and her legs are so long there is no way she has the strength to get them all off the ground at the same time. 

After just half the clinic, she started to complain about her knee hurting.  And her hip "pops" sometimes too.  All on her left leg. The same leg that you can clearly see the loose ankle joint. 

And so a doctor appointment has been made knowing that the result of that appointment will mean a trip to a specialist.  Beyond that I dont know what the plan is/could be.  What I do know is that this is the first major Marfan impact on her day to day life that she is aware of---- and it makes me so worried.  Will we know how to explain it to her?  Will my sensitive girl be able to deal with the fact that she probably wont be able to cheer or do sports like that as she grows up?

For now, we will see the docs we need to see.  And we will enjoy this cheer season together.


~L~ said...
This comment has been removed by the author.
-L said...

Keeping you guys in my prayers...and hoping that Grace can cheer for years to come.


Maya said...

Grace looks like she's having so much fun in this picture! :-)

What about knee braces? They don't look pretty, but my brother (who probably doesn't have Marfan but does have a lot of connective tissue issues) uses them for running and says they take away a lot of the pain.

Another option would be to steer Grace towards dance, if she'd like that. Marfan flexibility is a great asset there and it may not cause as much pain. Have you guys seen In My Hands?

Also, do you have a copy of the children's book? I don't know if that would help Grace come to terms with some of the long-term implications of Marfan or not (she might be too old for the book), but it's free from the NMF for affected kids.

Good luck! As a Marf, I know how hard it can be to give up beloved activities. As a parent to a Marf, I worry about how to explain the same sorts of things you mention here to J as he gets older.

~ Maya

laura said...

holy new blog template, batman! i love, love, love it!

i don't really know what to say, my friend. i can't imagine how hard this must be for you...how much it sucks to have to tell your child that she might not be able to do something that she loves. what i do know is that you and bill are two of the most amazing parents in the whole wide world. and you will get through this with such grace and strength, like you have gotten through everything else marfan has thrown at you.

maybe music lessons? didn't catherine get ya'll that set of pink drums a few years back?! ;) xoxo!