Tuesday, May 13, 2008

Life is serious

Well, anyway, it has been lately. This is a picture of my newest granddaughter, Maureen Charlotte. For months before her birth we were told to anticipate problems. She was too small, her limbs were disproportionately too short, maybe she had Down's Syndrome, maybe she had dwarfism. We thought about those things, and, really, we thought about how other parents who had kids with challenges viewed their children as gifts. But even though you know without a doubt a new child is a gift, it's impossible not to worry. You worry about whether your child might suffer. Maybe they will have painful physical challenges. Maybe they will have to suffer mean or thoughtless remarks from ignorant people. Will you be able to advocate for them? Do you have the wisdom to help them deal with other people's attitudes? It can be pretty stressful.

So here is Maury, having been in this world an entire three days when this picture was taken! She was small, but not too small. She weighed 5 pounds and 2 ounces. She was perfectly proportioned. She doesn't have classic dwarfism or Down's Syndrome. But she has some challenges. She has a pretty extensive port wine stain on her face, and although that can be treated and made to disappear almost entirely, there is a serious syndrome that can sometimes be associated with port wine stains, so she is scheduled for an MRI. And she is not gaining weight as quickly as one would normally expect. So that's a concern, too. But she's alert and active and given to expressing her needs quite, er ... vocally!

And she is, absolutely, unequivically, an amazing gift.


Phantom Midge said...

Well, I think she's adorable (as is your other granddaughter)!

My niece also had a birthmark "stain" all over her legs that was removed surgically when she was about five years old.

I will hope that the MRI shows only a healthy baby.

Carol Buck said...

Congratulations on the birth of your granddaughter, she is just beautiful! If you have any concerns about birthmarks or Sturge-Weber Syndrome, please feel free to contact me at 800-627-5482.
Carol Buck
Director, Patient & Family Services
The Sturge-Weber Foundation