A special-needs mama, learning from her micro-preemie son and typical daughter, one awkward step at a time
Born and raised as a faculty child at a boarding school on the East Coast, I moved to Alaska in 2000 for an adventure that turned into a love affair I know call home. I met my husband Nick on a 21-day hiking trip through the Alaska Range, on a route without trails, along river beds, through tundra, over mountain passes, and I knew he was the man I wanted to marry before the trip’s end.
Our wedding of five took place on a beach we kayaked to wearing rubber boots, where I held a bouquet of flowers I picked on the path from the shore to the red rocks that served as our backdrop. Legally married, we returned to Cape Cod for a second ceremony, with almost 200 family and friends, where I wore my Mom’s silk wedding dress, and with my hand in Nick’s, cut a piece of chocolate frosted cake decorated with nasturtiums.
A month later, I flew to Chicago for the national poetry slam, and while watching a man perform a poem on fatherhood, I thought, “I want to have a baby.” The night I returned to Alaska, I shared these feelings with Nick and we enjoyed the idea of it, only to decide the next day that we’d rather wait a year or so. But our son Elias didn't wait.
We stared nervously at a solid pink line the week we moved from a small trapper’s cabin, without running water, to a house closer to the heart of Anchorage. At my first ultrasound, we learned a baby boy called my left womb home (I was born with two uteri), but that my cervix was dangerously close to opening wide enough for him to slip out.
I spent the next six weeks on strict bedrest, only for my water to break in the 24th week. The natural childbirth we planned fell way to an emergency c-section, with me completely knocked out for the traumatic birth of our one-pound twelve ounce child. After 94 days in the Newborn Intensive Care Unit, we came home with a tiny baby tethered to an oxygen tank, with eyes that couldn't fully see.
Over the months and years of doctors appointments and therapy visits, we continued to adjust our expectations for our boy, who never reached a single milestone on time. Our outdoor gear grew dusty, as we became more and more familiar with hospital hallways and doctors’ waiting rooms. Our dream of building a cabin in the woods, in a smaller community outside Anchorage, withered when we learned Elias had cerebral palsy.
It took us almost five years to decide to try for a second child, knowing it meant the possibility of another NICU baby. “Watch her be late,” we joked, when the first ultrasound revealed a girl in my right womb. And as it turned out, I ended up induced in my 40th week, and after another c-section, Olive arrived with a healthy cry.
Bringing Olive home upturned Elias’s world, and we entered a whole new phase of behavior issues on top of developmental delays. Many a day I would return from my job an elementary school counselor, too exhausted to respond to the demands of my own children; and it was during this time that my fears were verified, Elias also landed on the spectrum for Autism.
As Elias’s medical file grew, I turned to writing, gardening, and sports for release, and remained thankful for the advice we followed of a NICU nurse who sat Nick and I down the first week and said: “I have seen countless marriages die here. Make sure you take time to listen to each other.” Instead of crumbling under the stress of premature parenthood, my relationship with Nick only grew stronger.
As the appointments slowed down, as we began to trust in our own knowledge as parents, and stopped looking for answers from specialists, we grew eager to return to the Alaska we fell in love with all those years ago, away from city trappings, with nothing but trees and critters for neighbors.
So with Elias starting middle school, and Olive entering first grade, Nick and I just sold our house in Anchorage, to move to a trailer on fifty acres of land, that backs up to a national park, on the edge of Seward, where we will begin the dream of building our home on the side of a mountain overlooking Resurrection Bay. My husband found the job, with health insurance, that allowed us to make the move and I now hold the gift of a year to write, garden and parent full-time.