When I became a mother for the first time, more than 25 years ago, little did I know that among the job titles I’d come to have was “detective.”
Sure, raising three kids had its drama – a plastic bead stuck in a nostril, a cord wedged between two teeth, a broken arm for one, broken toe for another, a hernia for a third. These typical childhood episodes were momentarily scary but otherwise unremarkable.
So when my oldest was in grade school, I didn’t think much of the odd complaints she had. “Growing pains” in her shins, the inability to get comfortable in bed, an exaggerated startle reflex, feeling “clumsy,” having very soft skin. On their own, they didn’t amount to much. However, they would add up to be anything but ordinary as these complaints became more severe as she got older: cold, bluish extremities, a gum abscess, hypermobility, gastrointestinal pain, fainting, depression.
For a solid eight years, my eldest and I visited doctors. Each visit resulted in X-rays, MRIs, supplements, blood work, a new prescription or “Sorry, I can’t help you.” Pediatrician, neurologist, dermatologist, rheumatologist, orthopedist, psychologist, dentist, periodontist, psychiatrist, ENT, gastroenterologist. They each knew their specialty but none could connect the dots.
One day, when my daughter was in high school, I dipped my toes in detective work when she fell asleep on our hallway floor, exhausted after hours of sobbing with stomach pain. Determined and desperate, I pored over the internet (once again) for clues to her gastrointestinal agony. This time, I found that it was possible to have all the symptoms of celiac disease even though two tests came back negative. No one ever told me. When she awoke, we began a gluten free experiment. Three days later, she was feeling great.
I was angry at how clueless I felt. Angrier still that none of her doctors mentioned this as a possibility. It was time for me to take control and add “trailblazer” to my detective’s resume.
A few years later, though, the stakes felt higher. Her body was in constant pain. Joints, spine, elbows, knees, ankles – they ached all the time. She couldn’t get comfortable – whether standing, sitting or in bed. She was depressed; despondent. I was afraid I would follow. Not knowing which doctor to call on or who to turn to, I turned to the internet. After days of research, I found something that sounded like it was describing my daughter. It was Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. I had never heard of this before.
It would be 6 months before we could get in to see a geneticist who specialized in EDS. I didn’t wait for a diagnosis. We attended an EDS family support group, joined an online EDS community, we learned all we could about EDS and how to find some relief. We learned from our EDS family about the tools we could use to ease her pain and lift her spirits. She experimented with ankle and elbow braces, a seat cushion for the car, trekking poles for our hikes, hot and cold compresses, CBD oil, body pillows and more. She began physical therapy and aquatic therapy.
Nine months later, a geneticist confirmed our suspicions. My daughter had Hypermobile EDS. There’s no cure, but hearing this news was a relief nonetheless. The diagnosis, a formality. Thanks to all the tools in her toolbox, she was already on the road to a better life.
Now in her mid-twenties, she is not without pain, but knows that we all “have something,” visible or not. We’re not without our burdens and she is not alone. She uses her tools to live her life – one of adventure, performing, travel, dance, and work.
When we become parents, we immediately become many things. Some are obvious: caretaker, cook, chauffeur, teacher. Others are not so apparent – advocate, nutritionist, student, detective.
But we also become the pioneers in our children’s lives – entering terrain that we’ve never even seen before, much less traveled. If we’re lucky, we can pave a road ahead – blow torch it, if we have to – so our kids can go on their way. Not to make their lives easier, but to make their lives possible.