Most days, I take my daughter Evangeline with me to pick up her older sisters at school. Inevitably, a child waiting with her mother for a sibling greets us. "Hello, girl. Hi. "
Evangeline is 5. She has Down syndrome, is nonverbal and mostly uncommunicative. Every time a child tries to befriend her, I grieve a little. I grieve my daughter's delay. I grieve that Evangeline doesn't know how to make friends.
Pearl S. Buck, 1932 Pulitzer Prize winner in fiction for her novel, This Good Earth, and mother to a child with a disability, once wrote, "I miss eternally the person she cannot be." As a mom, I don't want to get that.
But I do.
This is called chronic sorrow, a natural, often unrecognized grief response by those who love children with special needs.
Anne Grunsted, a Chicago mom of 4-year-old Bobby, knows the feeling. Bobby has Down syndrome, a single ventricle heart and oral dysphagia.
"When we learn our child is disabled, we're not able to process the totality of what that means. If we were forced to swallow the whole pill at once, we could literally go crazy. So, instead, denial ensues. We take in what we can and ignore the rest until we're ready to handle more of the situation," says Grunsted, who recently attended a seminar on grief and denial. "That's how I see chronic sorrow-every now and again, a layer of denial gets stripped away. I grieve something new."
Steve Grcevich, a physician specializing in child and adolescent psychiatry, says such grieving is normal.
"Parents of kids with developmental disabilities are especially prone to chronic sorrow in a Facebook world offering daily reminders of unattended proms, college campuses that won't be visited, and independence their child may not achieve," he says.
The idea of chronic sorrow doesn't sit well with me. I want closure. Isn't it bad parenting to grieve a child standing right in front of us? We want the world to love and accept our children. If grief presents itself over and over in our lives, does that mean we love them less?
The answer is no.
After years of parenting a child with special needs, I affirm that life is good. My husband and I have a strong marriage. I am mom to four beautiful girls. Therapy and doctor appointments, changing a 5-year-old's diaper, and having to leave a party early because of overstimulation are all parts of our family's normal life.
Parenting a child with special needs involves a tight-rope tension, an almost mystical dichotomy. I love my daughter more than breath, and yet sometimes I grieve, not who she is, never who she is.
I grieve the child Evangeline is not.
Gillian Marchenko is the mom of four living in Chicago.