Tonight I witnessed something amazing. My daughter, Evelyn, raised both her hands up (lefty helped righty rise above her head). Her hands let go of each other. And then nothing happened. Three seconds elapsed, her arms stretched up high like pillars holding up the world’s largest invisible bridge. For our Evelyn has carried a burden so heavy, that the cement and metal that would normally support tons of pounds of weight could easily crush her spirit, her will to thrive. But tonight, she stayed strong. And for the first time in her four years in this humanly world, she had enough muscle strength in her right arm to hold it up.
Normally it would flop down immediately upon release, like the weight of the bridge was just too much for her thin arm. Her muscle tone has been low since birth–a condition still unknown to us. Why is her right arm affected and not her left? Why does she have difficulty with hip flexor strength but not her neck? We don’t know.
When Evelyn was born, her right arm didn’t move at all. From her isolate box in the NICU, her frail left arm would occasionally reach for the lid and wave side-to-side. That was in the rare moment that we caught her as she woke up from her deep slumber. But with her tiny fingers outstretched, I knew she was okay. She was still breathing, she wasn’t having any “episodes” where her minuscule lungs stopped sucking in the much needed oxygen to survive.
But her right arm never moved.
With occupational therapy, we learned to lightly tickle the top of her hand, hoping to coax the nerves into wiggling her fingers. Sometimes we got her pinky to dance. On those occasions, we cheered.
For the next four years, she learned to use her right arm in conjunction with the left. We worked hard to make her remember to use it, to not let it go to waste, and to strengthen it as much as we could to counterbalance the low muscle tone.
When a child has disabilities, the work to help them is endless. It is exhausting. And it often feels useless, but as parents, we tirelessly keep going. Even when I wanted to break down into tears (or did break down into tears) at the struggle to get a toddler to do what she doesn’t want to do (even though it is the best thing for her), I never gave up hope that she’d gain more ability with her right arm. And tonight, we reaped a huge benefit of our time, our passion for our daughter, and our struggle in giving her the best life possible.