When my daughter was born, my mom called it karma.
I’d been a fussy baby, colicky and fretful. I barely slept, crying around the clock. When my daughter Eisley was born, it seemed like I was reaping what I’d sowed. She never wanted to be put down, only sleeping cradled against my chest. Even then, an intricate bedtime routine was involved — swaddling, turning on two white noise machines, swinging her in exaggerated arcs and holding a pacifier in her mouth. The process leading up to her hour-long nap took upwards of an hour itself.
I knew from the get-go that Eisley was going to be a different kind of baby. When I gave birth to her, the nurses cleaned her up and put her on my chest. She pushed up, lifted her head up, and looked around the room with incredibly clear eyes. She weighed only five pounds 10 ounces. The labor and delivery nurse did a double-take, “I’ve never seen a baby that little look around like that.” Turns out, this was an indicator that Eisley was going to be a restless and unpredictable child.
Eisley took to most things with her characteristic impatience. She wouldn’t sit still. If left alone for even a moment, she made her displeasure known. I spent the first four months of her life hauling her around in a MOBY wrap. It didn’t matter if I was writing an article or doing the dishes, she wanted to watch. Eisley was crawling when she was just a few months old, and walking by nine months. She knew there was a lot of world to see, and she wasn’t going to waste any time.
Loud, unexpected noises frightened Eisley and she cried when exposed to bright lights or sunshine. She was also highly sensitive to heat and cold. The first few years of her life, she refused to wear more than a diaper and a blanket. As she grew older, getting her dressed continued to be a challenge. Certain fabrics and fastenings irritated her. She’d have fits of anxiety, saying her socks made her feel “nervous.”
Strangers, friends, and family accused me of being a helicopter parent, I was too permissive, too willing to let my daughter be the boss. I read parenting books, visited online forums and conferred with family, friends and doctors. What was I doing wrong? While some kind souls expressed, “All kids are different and we can’t hold them to one standard,” others advised, “If she doesn’t like the food you make for the rest of the family, send her to bed hungry.” In the end, I listened to my instincts.
Then, I was diagnosed with Ehlers-Danlos Syndrome (EDS), a disease of the connective tissue that make it difficult to process sensory information. A light bulb went off, as I remembered my own childhood struggles with pain. Had I passed on this genetic condition to my daughter? A visit to the doctor confirmed my suspicions — Eisley, too, had EDS.
Eisley’s early EDS diagnosis was a blessing. She began physical therapy to work on strengthening her joints. In the process, a lot of her more dramatic behaviors settled down.
Time with an occupational therapist led to an additional diagnosed: sensory processing disorder. Eisley’s sensory responses were outside of the norm when it came to her tactile, vestibular and proprioceptor senses, the latter which is related to sensory input from joints and muscles.
When we paired physical therapy with occupational therapy, a whole new Eisley emerged. Today, my daughter feels safe, happy, loved and respected. Together, we’re facing EDS head-on, hand-in-hand.