Sunrise, Sunset

Sunrise and Maddie’s crying. If I’m lucky, it’s been six hours since she’s gone to sleep. Her syndrome might be called “happy baby syndrome” but she’s far from happy at this point

Angelman Syndrome, to the outside world, seems like a novelty. I’ll take my daughter out in public. Strangers that pass by will comment on how happy Maddie looks. She is happy and that’s a blessing.

What’s hidden by Maddie’s happy demeanor is a world of worry. They don’t experience the seizures. They don’t experience Maddie’s frustration when she can’t communicate her needs. Since Maddie’s body doesn’t produce melatonin, they don’t experience the sleepless nights.

My wife and I some days are zombies. We stumble through our work days. We come home to our beautiful girl and get her ready for bed. We enjoy our blessing, but feel the sacrifice. Sunset and Maddie’s wide awake.

-Written by Adam Birchmeier