I'm more than Annie's mom

A disabled child is a huge responsibility, but it needn't be life-defining

March 25, 2012|By Mary Scott

For 32 years, I have felt defined by my daughter. When I encounter someone at work or in the community, the first question I'm often asked is, "Where is Annie?" As if we were permanently joined at the hip. As if she has no life without me. As if I have no life without her.

I sometimes wonder what people think of me — of my life — and of Annie. I sometimes feel that people see me as a one-dimensional caretaker of a perpetual child. The mother who sacrificed a "real career" to accommodate the needs of her daughter. The woman who works in special education because that is all she knows. The poor soul who will never know the freedom of an adult life without caretaking.

I think that some people pity me.

I am not a person to be pitied. And I am not a saint, a super-mom or a selfless soul.

I am a person who has accepted the responsibilities of parenthood in their fullness while making every effort to preserve my own individuality and to meet my own needs. I have struggled throughout the years to achieve some sort of balance among my needs and the needs of my children and my husband. What we don't understand as young people is that sometime there just is no balance — that one person's needs must take precedence over another individual's or the group's. The challenge is not to let this become a permanent situation, a way in which we define ourselves and our family life.

I wish that I had understood as a young wife and a young mother that I couldn't change other people. "Change your thoughts and change your world," says the coffee mug in the beach souvenir shop. Certainly beats out the mug that says "Life is crap."

Blaming others — husband, teachers, school officials — turns out to have been a waste of time and energy. If only someone had told me that you can't change a person, you can only change the way you respond to that person. I, in my hard-headed youth, truly believed that I could force people to see things my way. Too much energy spent arguing, insisting and pointing fingers.

So, has Annie defined my life? Only as much as I have allowed her to. There are times when her needs have to take precedence over mine and the family's. Perhaps there have been times in the past when I allowed this to continue longer than it should have. Throughout the years I have, at least intellectually, realized that time away from the child, time away from the family, time away from the husband is critical to my survival. Why else would I have gone to a spa with a friend to celebrateMother's Dayweekend for years? The best way to be a good mother is to get some time away from your children.

I am no longer the mother of a child. I am the mother of a 32-year-old daughter with significant disabilities. My challenge at this stage of her life and mine is to allow her the independence she desires as an adult and to fashion a living situation that will enable her to continue to grow independently from both of her parents. Looking to Annie for guidance, her father and I need to create a life for her where none of us is defined by the other. Where each of us is living an interrelated and satisfying life, not depending on each other for our identities but depending on each other for love, support and lots of fun. Where we each can stand alone and also together, enjoying the present and looking toward a hopeful future.

Mary Scott, a resident of Towson, is a resource teacher in the Baltimore County Public Schools. Her email is mescott@comcast.net.

March is developmental disabilities month. Information is available from the Maryland Developmental Disabilities Council at http://www.md-council.org/.

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