6/4/12

Marf-Family

Ang, Maya, and me
When I started this blog a few years ago, I found a few other blogs that I have religiously followed since; one of those is Musings of the Marfan Mom.  It was so great to find another Marfan family - someone who I didn't have to explain Marfan Syndrome to each time something new came up with Grace or the Hubby.  ((Not that I mind spreading the word about Marfan but its comforting to know someone, even only online, that gets is.

Since I started following Maya's blog, we have both had a second child, had new Marfan-related challenges, and have exchanged emails about Marfan Syndrome, the kids, doctors, and navigating Hopkins (where so many of the Marfan specialists are).

This weekend, we got to meet.  And it was so great!!!  Ang, another Marf-mom, and her family were there too. 

The families got along great --- Grace was so good with Maya's little boy and the babies had a blast playing in the sand box at the children's museum.  And us parents just enjoyed meeting and chatting in person rather than via email.

All the kids - 3 of them with Marfan Syndrome
As we drove home last night, I couldnt help but be excited to have a "new Marfamily".  Marfan Syndrome is considered rare but in my world, its a constant presence, more and more recently as Grace grows up.  It feels so good to have someone else to reach out to with questions or just to talk about it all.  At the same time, it is a little scary.  Its the first time we have introduced Grace head on with Marfan Syndrome; we are just starting to explain that she cannot do certain things and trying to show her all the things she can do.  It's territory that I am just not familiar with and I feel a bit like a deer in the headlights as Grace is beginning to grow.


But now, I have new MarfMoms to reach out to and Grace has Marfan role models to look to as she grows up.

8 comments:

laura said...

this just makes me so happy for you, my friend. i love how the blog world makes the real world seem a whole lot smaller. xo!

Maya said...

it was so awesome to finally meet in person! thank you again for driving to meet us. and M was enamored with Grace!

laura said...

p.s. gracie's outfit is RIDICULOUS. i want one in my size. save for syd --- it'll fit her when she's 12! ;)

Jaime Barnhart said...

Laura --- every once in awhile I brave a trip to Justice and find some non-trashy attire. And yeah its a size 12 so Syd can wear it in high school. :)

Noelle said...

Everyone needs support and I'm so glad you have your new friends!

Anyone who comments to me about how tall Em is I say 'maybe she has marfan syndrome' and then they say 'what??'

I'm doing my best to educate people. :)

Jaime Barnhart said...

Noelle -- I assume the docs have looked at Marfan Syndrome?? With all of Emily's issues, I am sure they have thought of everything!!!

Support is invaluable --- life can be hard enough with all the medical stuff so its nice to know someone else is out there who gets it. :)

Ang said...

It was so great to meet you too Jaime! I am so grateful that we have Marfamily to reach out to. My parents had none of that and so I grew up feeling very alone. I hope that Joshua will never experience that feeling.

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