BLOG: Born To Stand Out

The following is a letter written to my daughter on her turning 10 months old today.  During my pregnancy the future was grim—we were told she wouldn't make it to birth. She did, and then 24 hours after birth she was diagnosed with Turner Syndrome (missing one "X" chromosome).  You can always read more of my (and Lily's) story at www.fatlittlelegs.com)

Dear Lily, 

You are 10 months old today!

Honestly, I cannot believe how quickly the time has gone, even as yet some days have seemed agonizingly slow. 

I am so happy that I can finally tell you that I have come to a place—a place of acceptance.  A place where I see you as a smiling, babbling, army-crawling, curious, sometimes-naughty, social butterfly, silky blanket loving, cheese puff eating baby girl, and not as a syndrome when I look at you. 

I am almost embarrassed to admit that only a couple of short months ago, I thought endlessly about your missing chromosome. I tossed and turned at night, thinking about it, and how it was effecting you now and how it would effect you in the future. There were times that I caught myself apologizing for your petiteness, and trying to explain away the excess skin puckered on the back of your head and neck. I would find myself in public places trying to keep your head from view of other people, as to not have to deal with the stares. 

There were endless days and hours of appointments, endocrinologist, audiologist, ENT, anesthesiologist, pediatricians, ophthalmologist, gastroenterologist, physical and occupational therapists ... and I felt sorry for myself when you failed not one, but three hearing tests, when you wouldn't gain weight, when you would throw up time after time, when I had to hand your 11-pound body over for a surgery just two months ago.  I felt sorry for myself, I was overwhelmed with the frustration and anxiety that takes its toll on a parent of a child with different needs. I was exhausted from working full-time and doing ALL of the appointments, and I began to resent you just a little. And then, I read about some of your TS sisters, and the heart surgeries they had to endure, and I realized that we were so lucky, because the one specialist you didn't need to see was the cardiologist. God healed the small hole in your heart. I was humbled. 

And I resent myself just a little for sitting through the last 10 months and worrying so much. For focusing on the number of chromosomes you have rather than the life that was blossoming in front of me. Now it seems that in only two months you'll hit a magic milestone of 1 year old, and your baby days will disappear. I could have been enjoying you so much more during the time I was worrying, and fretting, and feeling sorry for myself. 

But now, I've moved on, and the last month with you has been nothing short of bliss. I take quiet moments as I rock you to sleep to touch your skin and hair, to breathe in your sweet scent—to marvel in the amazing perfect creation of your tiny fingers and toes. I drink in your laughter, and your "ba ba ba ma ma ma da da da" babbles. I am amazed by your ability to hold anything—and I do mean anything—perfectly with your feet. I observe an engaging personality starting to emerge. You wave and smile to everyone and if they don't respond to you, you yell at them. I just sit and smile and say thank you when they all coo over how cute you are. I no longer feel like screaming out—my daughter has Turner Syndrome! 

I used to think that your chromosome count would matter, but the last 10 months have taught me that you will not be limited by the count of a silly "X" chromosome. And so, I learned from you and follow suit. 

Yes, Lily, I see YOU, 10 months old, amazing toothless smile with eyelashes so long they should be illegal, and not 45 chromosomes sitting in front of me. 

And finally ... I can say, I wouldn't have it any other way.

Thank you for teaching me that different ... is good! 

As the wise Dr. Seuss said, "Why fit in when you were born to stand out?"