Good Changes

Miss M, I’m going to do something for you.  It’s for you, and you alone – don’t ever forget.  It’s probably going to take even more of my limited time.  But it’s worth it, my sweet girl.

We’re starting to think about a non-profit.  I’ve “met” a couple of KFS supporters and three of us are getting linked up to explore this idea, this promise.  What if we could improve treatment, identify genetic causes, identify experts in clinical practice, initiate new research studies?  What if we are strong enough to do this – we are few, but we are mighty.  I hope.


Baby, you’ve come a long way!

Today was your 9 month check up, Miss M.  You are 27″ long (25th percentile) and 16.5 lbs (above the 10th percentile)!  Way to grow, baby girl!  In a week we have an appointment with the craniofacial surgeon – hopefully he’ll think this is enough progress that we can schedule your palate surgery for May (fingers crossed).

And for today, some thoughts on beauty.  I do think you are beautiful, Miss M.  Your almond shaped hazel eyes are such a beautiful color, not as dark as my own brown eyes.  And they just shine when you laugh, which is often.  I love the area between your shoulders and your ears because that is where you are the most ticklish.  I love your upper lip, with it’s little attempts to move in the right direction – slowly, with time, it looks less like it is paralyzed, and more like the nerves and muscles are beginning to connect and move in the right ways, and I love seeing this change take place there. I love your long hair which lets me dress you up with a little bow.  I could go on and on about all of the things I think are beautiful about you.

I know you won’t believe me when you are older.  I wish I could shelter you from the pain of your teens and early twenties, when you will feel like such an outsider and completely unlovable.  But you will come to see, when you are in your 30s, how little all of the external stuff matters – it doesn’t matter AT ALL, Miss M.  Not one little bit.  Eventually, your yearn to be conventionally pretty will fade, and you will wonder why you spent so much time worrying about it when you could have just gone about your life with confidence since you are smart and capable.  I hate that society bombards little girls with images of beauty, and makes us feel like being pretty is the only thing that matters.  I hope if I teach you only one thing, it is that you are LOVABLE as you are.