"What's wrong with him?"
Kids barrage me with questions at the playground when they see Elias walk by with his blue canes. They are curious and they aren't afraid to ask-- unlike adults who may want to pepper me with questions but aren't sure how to articulate their curiosity and, I like to think, compassion into words.
We often tell kids that Elias had an injury at birth that makes it hard for him to control his body, but that he is learning just like them.
Here is a more detailed answer for the curious compassionate parents who sit on the side benches and watch:
To tell Elias's story, I must first begin with me.
I was born with not one but two uteri, each with its own cervix. I discovered this at my first OB appointment, at age 17, with my legs awkwardly positioned in stirrups for the very first time when the doctor who sat on his stool between them, so tactfully declared, "Well, you're different."
This led to my first vaginal ultrasound where this same doctor ushered in a flock of male interns to discuss the scientific relevance of my multiple wombs as I lay on the bed squeezing my Mom's hand, wanting nothing more than to disappear.
As you can imagine, I spent the next ten years mistrusting doctors, hospitals, and western medicine, in general, as I also worked to reclaim my strength and power as a woman.
In 2003, happily and newly married to my fabulous husband Nick, I conceived Elias in my left uterus, half the size of a regular one and with a very short cervix to boot. We saw a midwife, who had helped to deliver a healthy baby from another woman with two wombs, so though I knew I was deemed a "high risk" pregnancy, I assumed the best possible outcome would also happen for me.
I had my first ultrasound at 18 weeks, the joy of learning he was a boy was quickly overshadowed by the discovery of the shortening and opening of my cervix. My midwife told me I needed to go home and lie down and she scheduled an appointment with the perinatologist for the next day.
He ordered strict bed-rest at home, only allowing me to sit up to use the bathroom or drive to appointments, otherwise prone. We canceled our upcoming flights to Oregon for Christmas and I called the small private school where I taught, learned they didn't have Family Medical Leave, and quit my job, cutting our meager wages in half.
We thought bed-rest was one of the most stressful experiences we'd endured, until six weeks later, when my water broke a few days shy of 25 weeks, and we made the frantic middle of the night ride to the hospital.
"I can see his foot," the nurse said, as his heart beat weakened, so they rushed me in for an emergency c-section, leaving Nick behind to call our parents... and wait.
Elias arrived with an APGAR score of 0 needing to be resuscitated numerous times and placed on a respirator. He weighed one pound twelve ounces and measured 12 inches in length.
During his 94 days in the NICU, he suffered a serious hemorrhage, and underwent brain surgery as his little body still recovered from a less serious surgery on his heart. He stayed on a ventilator for seven weeks and when he finally came home, after 94 days, we brought an oxygen tank home with us, along with a new-found respect for the professional compassionate work of nurses and doctors. The miracle of modern medicine that gave us our son.
We left the NICU only to enter the world of early Intervention and over the next few months and years we'd learn that Elias was not a "typical preemie" who would catch up by the time he turned two.
His list of diagnoses continues to grow but the short list includes Cerebral Palsy, visual impairment, processing delay, and chronic lung disease.
CP is a broad term for damage to the brain that affects muscle control and for Elias this means he struggles with balance, fine and gross motor control, and coordination in general. His vision remains a mystery: he has what's called Nystagmus, a disconnect between his brain and eye muscles, making eye contact a challenge due to the constant movement of his eyes; but he recognizes all his letters and often knows exactly which road we are on as we traverse Anchorage in my old green Subaru.
Oh, and there is so much more I could include here, and I may come back to add more, but the sun is shining and I know a little guy who would love to go in the backyard to play. My little man Elias who has taught me that we can recover from anything, we can unravel completely and piece ourselves together again. Daily he reminds me to delight in the ordinary, the sound of a word, a crooked smile, the knowledge that we are here.
We are alive.
PS. Since I wrote this we have added Autism and incontinence to our list.