noodle

Julianna lives in my town, she goes to the hospital where I'm based several days a week. She is the coolest little kid. About 2/3 of the kids I work with "look funny", but man, they are the cutest little buggers. My family gets so freaked out when I mention a "cute kid" and my brother now asks "cute, like work, cute? or cute like the rest of us, cute?" Sometimes I want to smack him. Treacher-Collins can be fairly mild looking or severe, as in Julianna's case. amazingly enough, the few kids with that disorder that I've had the privilege of working with had really high IQs. We have an incredible Cleft Palate/Craniofacial Clinic here and they've done an amazing job. You wouldn't believe how awesome and supportive her family is.

No matter how different these kids look, the most common threads are a sweet personality and wicked sense of humor. You'd be surprised, I think, in a few years what they'll be able to do for Julianna. She is amazing. All my kiddos with their huge heads, twisted bodies, and missing limbs have bigger hearts than most of us on this planet. How could you deprive the world or simply yourself of the opportunity to experience their lives? This is such a tough topic for me because these kids also tear me up, with the pain they have to go through. I've watched a two-year-old whip up her shirt in the doctor's office to offer her port to the nurse so they can inject her with more poison that could save her life. The whole time with tears running down her cheeks and no one noticing that she's missing her left leg from the knee down. But most of the kids I work with that have made it to the point in their lives that they can express themselves, have told me that no matter what pain, suffering, etc they had to go through, they lived.

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