The Mysteries of Lillie Hines

As we’ve already described, Lillie is a kiddo with complex medical and developmental issues. And, for the most part, we’ve adapted to being her team captains pretty well. We have put our organizational, phone (so many calls!) and social skills (tip: ALWAYS be nice to nurses) into overdrive and have found a way to keep her appointments, therapies and tests almost straight. Then there are the mysteries…

Every month or so, a new issue seems to pop up out of the blue. Maybe it is something that has been lurking around, like frequent spitting up, but does not immediately make the ‘to do’ list. Or maybe it is sneaky and is mislabeled at first. Case in point – Lillie’s hair is duo-tone. No, really. Basically the right side of her head has golden blonde hair and the left side is a sweet light brown.

The first time we noticed this was about a year ago after a long hospital stay – a stay that included a continuous EEG test, which involves 24 rainbow-colored wires being attached to your baby’s head with adhesive. While Lillie did not seem to mind her special hat, the aesthetic aftermath was dramatic – delicate wisps of hair clumped and standing straight up covered in glue. Imagine something between rubber cement and Elmer’s.

After the test, mom and Aunt Suze temporarily transferred their medical stress into a “fix Lillie’s hair” obsession. They asked nurses, googled relentlessly and attacked the problem from all angles brandishing pads of hospital-supplied adhesive remover and Q-tips dipped in nail-polish remover. It was a delicate process, and after a lot of time and effort, it seemed to work.

Then, imagine mom’s surprise about a week later when she noticed the remedied hair was a little darker on one side. Looking closer…oh my…is it really? Two different colors?!

Time passed and we tried a few things to even things out – fresh lemon juice anyone? – and we encouraged her roots to pop up in her natural color the way you might talk to plants to make them grow. Then some members of Team Lillie started to wonder – was it really from the EEG goo removal? Or could this be another special Lillie trait related to her chromosomal anomaly? Mom, still guilt-ridden for “ruining my baby girl’s beautiful hair,” could not be convinced. Hours were spent pouring over newborn photos, squinting to find evidence of the first blonde-brunette appearance.

On this Father's Day, we should note dad’s reaction to all of this:  You want to do what to her hair?!  No, you may not shave it! Don’t worry Lil, daddy has your back.

Happy Father's Day

And yet, like many other far more important Lillie mysteries (e.g., her vision, future mobility, communication potential), only time will tell. So we do everything we can. We grow proud of her fashion-forward hair. We get her all the help she needs. We use our advanced sleuthing skills to solve all the puzzles we can. We work on staying in the moment. And mostly, we love her while we wait for her to reveal the answers of all her mysteries to us in her own time.