How Kate is Doing

Kate has such a great attitude.  I had to tell the elementary school that Kate can't sprint or exercise heavily.  She can't do anything that gets her heart racing.  She can also never lift anything heavy.  No Book Decor work for her.  And because of her eyes,  she can never play sports.  Especially sports where she might get hit.  And swim team is out,  too hard on the heart.  She was sad about that one.  At school the other day she had to sit out while the kids did some sprinting, racing each other.  I think that was strange for her but she told me about it while keeping her happy attitude.  She knows she has something going on.  She asked me last night how her eyes and heart are related to whatever is wrong with her.  Trying to explain genes and connective tissue to an 8 year old was not easy.  She claimed she understood, sorta.  I guess that's all we can ask for right now.
For the most part,  I don't think anyone would see a difference.  We can tell that she is worried about it though.  She asks questions out of the blue,  like when she has surgery on her eyes,  they will have to hold on to her because she wiggles when she's asleep.   She is also very attached to Ethan and myself.  Doesn't want me to leave for book club or even run to the store.  She doesn't cry or anything she just hugs me and asks me to cancel whatever I am supposed to be doing and stay with her.  It's hard.  It stinks.  We are thinking about looking into a Marfan support group.  Our concern right now is that some kids with Marfans look kind of different and we don't want Kate to be afraid that she will look like some of these other kids.  Marfans is hard because there is such a range. You can have kids like Kate, who don't show a lot of the outward signs,  and kids clear at the other end of the spectrum.  We are thinking of showing up to a meeting without Kate and see what we think she might get out of it.