by Katie Smylie
August 18, 2021
One January I noticed my daughter was missing a little hair on the top of her head. It was right at her hairline and could mostly be ignored. Soon that little spot became so noticeable that I called my nurse friend. Three spots turned to five and her back hairline was suddenly gone. Kevin and I scoured the internet. After a long wait to see a dermatologist, we learned it was alopecia areata, an autoimmune disease that causes inflammation in a person’s hair follicles, resulting in hair loss. Some lose little spots all over their head, some go on to lose all their hair—each person is different and there is no way to predict the outcome.
That first summer, in a sea of anxiety and overwhelming worry, I came across a group for parents of children who have alopecia, and they had a beach day on the calendar. It was a long drive, but we wondered if it would be helpful to meet some parents with kids like our daughter.
“Be careful,” said the dermatologist. “Those parents have all had the worst case scenario. You don’t want to worry unnecessarily.”
My own heart said, “They all know each other already. There’s no space for a newbie with too many questions.”
The barriers felt like bricks building a wall in my heart.
Surely you’ve sat in an evaluation period wondering if something will be worth it. Worth the time, worth the money, worth the emotional investment.
What if they are weird?
What if I am the weird one?
What if they are judgy or I am misunderstood?
What if it’s a waste?
The truth was that it was worth a try. Sure, the people might be odd and the time spent driving could be a waste. But there was a Dunkin’ Donuts nearby, so at least we could salvage the day with donuts and a cup of nostalgic coffee. It was time to break through the wall and take action.
If I close my eyes, I can picture the circle of parents on the beach that day—the day freedom came to rest and my idea of ‘community’ changed forever. Parents united in the uncertain nature of the future. Parents who had never met before and those who had been walking this journey for years. Parents who bonded because their kids had the same rare condition that had the potential to bring about suffering and pain. No one talked about treatments or studies . . . no discussion of grades or accomplishments. Just moms and dads laid bare knowing there was no need for pretense or posturing. We had found each other. Each one ‘got it’ and we were known.
Fall is coming and with it there will surely be opportunities for us to enter into new spaces—a new school, a new Bible study or small group. Maybe it’s your time to enter into a friendship with that new neighbor or the new person at work. There will be barriers. There might be a judgy person or a strange new experience. It might even be awkward at first.
But it could be worth it.
It could be the place where freedom rests. Perhaps it could be where God will reveal a spiritual gift. Who knows if even your presence will help that community develop into one without pretense or posturing. It is possible you just might find one who ‘gets it’ and the place you are known.
Katie is the Shepherd of Growth Ministries at Fullerton Free. She is a recovering perfectionist whose life experience has long since pushed her out of a life of pretense. She would be happy to help you explore options for a deeper community: email@example.com.