Emily Orton is a former middle school teacher turned New York City SAHM and part-time writer. Her most recent offerings can be found on Work. Life. Balance., The Apron Stage, and Segullah. She is a huge fan of Dare to Dream and pleased as punch to contribute. When she's not reading or writing, Emily enjoys walking all over Manhattan, coastal sailing, and editing her apartment. She and her husband, Erik, home school their five children.
By four months old, my daughter Mermaid was showing signs of developmental delay. Despite reassurances from my midwife and my pediatrician, I wearied myself with inconclusive internet research about Down Syndrome.
My husband called me paranoid. I craved certainty. Even the highly praised geneticist of thirty years couldn’t give it to me. Finally, with Mermaid at six months of age, blood tests revealed the microscopic extra chromosome that shook our paradigm. There was some reeling and some relief. At least now I didn’t have to worry if anything was wrong. I could get to work.
Genuine acceptance and resilient humor, two of my husband’s hallmark qualities, buoyed us over the first few hours of transition. He wanted matching T-shirts that said, “We put the O in Chromosome” or “I’m down with Downs.” He said Mermaid’s four older siblings would be so jealous of all the cool trips Mermaid got to take with us in our wild retirement years. Encouragement from friends and family enveloped us as a whirlwind of evaluations and a battery of medical tests, I thought reserved only for politicians and celebrities, ensued.
Through it all, I held my girl. I nuzzled her soft warm head. I considered her future. So much was still uncertain, but I knew she would have to work hard for every achievement. I wanted to do something hard, too. The circumstances of my life aligned to make a marathon possible. It had been scratched off my dream list for years, but the shape of my dreams was changing. I wanted to run to honor Mermaid.
I began training by taking the stairs instead of the elevator. I had worked up to ten miles with my steady friend, Heather, as my trainer/partner when Mermaid began having seizures. Tracking down a pediatric neurologist on a holiday weekend (these things always happen on weekends or holidays, don’t they?) was a saga unto itself. She interpreted the mass of EEG scribbles as electrical misfires in Mermaid’s brain and we had a shared suite in the NYU pediatric ward within three hours.
Fortunately, Mermaid obliged us by having a seizure shortly after she was hooked up to the EEG and video monitors. She was immediately diagnosed with Hypsarrhythmia. Sounds like a dance craze, right? I wish. It was actually the beginning of an insurance tango, learning to give my infant injections, and more tests than I ever took in college. By day two of hospital vigilance, I needed to run. I knew I might have to give up the marathon, but my body needed to move. My husband took over the bedside duties while I held my other children, slept in my own bed and ran with Heather.
That crisp morning air, the steady rhythm of our tandem footfall, the oxygen, the endorphins and the encouragement of my dear friend convinced me that, now more than ever, I needed to run this marathon. Mermaid came home and I continued training. The neurologist assured me that the chaotic electrical impulses in her brain weren’t causing damage. Mermaid descended into a developmental pause. I ran. She got very fat. I ran. Her eyes were dull and unfocused. I ran. She never smiled. I ran. My husband and our four older children needed me, too. I ran.
Almost every day I trained with Heather. On weekends a larger party would form for the long runs. Sometimes the conversation would transport me into the concerns and joys of the other women. Miles of quiet along the river was the sanctuary for my searching prayers. Often enough that Heather wasn’t surprised, my voice would tremble and the wind would send my tears sliding sideways across my cheeks as I uncovered my unbearable fears. But we laughed a lot, too. I always came home with flushed cheeks and the crazy notion that I could do hard things. I could carry my load that day.
The whole family came to cheer for me at the marathon. They were at
mile 1, mile 20 and mile 26.2. The older children held signs, waved
bright orange pom-poms and shouted out to me. Mermaid was slumped,
disinterested, in her stroller. The medication wasn’t working. I
hugged her and gave her a big kiss. I ran for both of us.
Running down my dream kept me two steps ahead of despair. This unexpected
protracted trial gave focus and purpose to my marathon dream. My training schedule gave routine, energy and sustaining friendship to my uncertainty. Achieving what I set out to do reminded me that I can do hard things one step at a time.
Epilogue: There are only two medications for treating Hypsarrhythmia. The second one worked for Mermaid. She is alert, engaging, determined and curious. She’s beginning to walk and talk. She smiles and laughs. She will be two in December.
What's the hardest thing you've ever done? How has running that down helped you face other challenges? Achieve your dreams?
After you read Emily's post, re-read Elizabeth Stewart Dunford's post Solace in Creativity. What similarities do you find?
I'd also re-read Emily Anthon's Suiting Up and Showing Up. What similarities do you see here? What can we learn?
And finally — Stephanie Soper's Portrait of an Artist.