Transformed

“In order to see the opportunities, though, you must accept what happened as if you have chosen it.” –Arnold Beisser

Becoming a mother changes you. Becoming a mother to a child with a physical or intellectual difference is less a change than an upheaval. Whatever you thought about yourself before, you find yourself defined in ways you never imagined.

First of all, you have achieved fame. Everyone knows you as the mother with the autistic child or the mother whose third baby was born with cerebral palsy. More often than not that’s how people will refer to you. “You know Christine, don’t you? The woman with the daughter with Down syndrome?”

You will discover how “special” you are. In an attempt to comfort you, you will hear the platitudes over and over again, like how God only chooses special people to be the mother of a “child like this.” You’ll have to smile and nod, even after you’ve heard it a thousand times. You’ll have to patiently listen as your child is limned as an angel, rather than the human being he is.

Writers will make us other- worldly, attributing characteristics to us that make us candidates for sainthood. Remember Erma Bombeck’s 1993 column titled, “Blessed Be Moms of Handicapped”? The angel asks God whom she should assign to be the patron saint of a mother soon to give birth to a child with a disability. God smiles and says, “A mirror will suffice.”

As much as we desire to be “just a mom” the truth is, there are fundamental differences between the “haves” (those of us who have children with disabilities) and the “have nots.”(those of us who do not) But they are not the differences the “have nots” think they are. Our lives are not necessarily harder or less fun. We don’t necessarily experience more sadness. It’s all relative.  A person whose child was born without complications may be coping with a failing marriage or struggling with alcohol. Their kids may have difficulty making friends or be dealing with an unexpected pregnancy. Even the most outwardly perfect family has its troubles.

We spend a lot of time trying to be regarded as regular people, in much the same way we emphasize that our children are more like typical children than unlike them.

But we ARE different, don’t you think?

Our children with special needs have produced profound changes in the way we think and act and feel.  Our child’s difference makes us different. Just as our child’s disability is integrated into his identity, so is it integrated into our own.

Being different is not a negative state of being. At least, it doesn’t have to be. It can be an opportunity to grow and to recognize our own strength and power to change the world.  Everyone knows that all the positive changes we have seen in the last fifty years—the closing of institutions, IDEA, inclusive schools, jobs and communities—are the result of mothers and fathers who have fought for it.

Our difference means we are more attuned to finding and surrounding ourselves with the best kind of people.  A lot of us have radar for that sort of thing and we rarely waste time with anyone who cannot appreciate the gifts and beauty and humanness of all people living with a difference. Some of us have a completely different set of friends than we did before our child was born.

No matter how quiet we once were, how often we acquiesced to the will of another, or how uninvolved we were, our experience with our child has made us forceful advocates. Whether that change happened right away or later in our lives, we no longer stand silent when something is wrong or unfair or not what we wanted.

We mothers of exceptional children have forged new identities since the birth of our child. We needn’t allow ourselves to be defined by our child’s disability, just as we shouldn’t allow our child to be defined by his.  But we can appreciate how our child’s birth has transformed us. We are who we were meant to be, better versions of ourselves.