1 Be aware of the fluidity of grief. Chronic sorrow starts and
2 Give yourself an allowance. Acknowledge your feelings and then
go a step farther and validate them.
3 Identify your triggers. Is it play dates? Birthdays? Family
reunions? Awareness gives you time to prepare and helps you
4 Allow your grief to co-exist with other emotions like love and
joy. You can feel several emotions at once and still be a good
5 Seek community. Situate yourself with other parents who
understand. Attend a support group. Have coffee with other moms at
school. Find a forum online.
6 Find experts who help. If your grief defines everything else
in your life, talk to a doctor, therapist or trusted friend. Don't
suffer in silence.
7 Look for developmentally appropriate opportunities for your
child to use her gifts. Seeing her happy will do wonders for
8 Create space in your life for your life. Do something just for
you. Rinse. Repeat.
9 Research. Check out Chronic Sorrow: A Living Loss by Susan
Roos from the library.
10 Repeat this mantra: Chronic sorrow may be a part of our
lives, but it is not the entirety of our lives.
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
"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
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
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
I grieve the child Evangeline is not.
Gillian Marchenko is the mom of four living in Chicago.
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