One Year

It has been a year since the first time we brought Ellie home. She was so small, tube feeds were terrifying, and it was hard getting up to feed her based on the ringing of an alarm, and not her crying. A year ago, we were a couple weeks in to first hearing about PWS, we were so scared, anticipating the arrival of news that would shape her future.

I didn't know that in the year that would follow, we would spend months more in hospital. I didn't think we would have nurses coming in to our house every night to watch over our baby. I didn't think we would have heart rate and oxygen monitor, a bipap machine, and a suction machine. I didn't think I would have drawers full of medical supplies. I didn't think I would be giving my daughter pills in the morning, and shots at night, or have a sharps bin in my laundry room. I didn't think I would have to worry about the probability surgeries to fix her ears, to remove tonsils and adenoids, or to secure her airway. I couldn't have anticipated any of this.

At the same time, I never could have imagined how incredibly full my heart could be with love for her. I didn't think she would eat on her own, and tonight she ate everything we did. I didn't think she would ever hold up her head, let alone sit, cruise, stand, like she does now. When she came home, she was silent. She didn't cry, she didn't coo, she didn't make a sound. Now, she laughs, she squeals, she babbles, and screeches. She has taught me so, so much in the year since she came home.

I would not trade her for anything, ever.