Dear Nicole,

I'm the Mom of a beautiful almost 6 year old named Carla with severe Muscular Dystrophy. I am 20 weeks pregnant with another child now and we are concerned because our genetic testing results are not back yet and I'm already noticing decreased movement. I don't want to make another child suffer like Carla has in her short life. How should I tell Carla we won't be having the baby if the tests come back showing problems? She is a very intelligent 6 year old and has been looking forward to her new sister or brother.
Sincerely,
Carla's Mom

  

Dear Mom,
This is probably the hardest question I've ever responded to. Of course, you don't want to make another child suffer like Carla has suffered. Watching helplessly while a child suffers is one of the most heartbreaking experiences of a parent's lifetime. Oftentimes, this pain is tinged with guilt. Guilt is rarely "appropriate" or logical but seems to serve as a buffer from a deep sense of confusion or loss of control; a parent might think, "Why is this happening to my child? What did I do wrong?"

With genetic testing this sense of guilt is magnetized because the suffering seems "preventable". Therefore, for most people, choosing to have a child with a disability is out of the question. There is a lot of social pressure to abort a disabled fetus, both for the baby's good and the good of the society. In Alabama it has been declared state policy "to encourage the prevention of birth defects and mental retardation through education, genetic counseling and amniocentesis "(Section 22-10A-l of the Alabama statutes).
I remember when I was 13, and my mother was pregnant. She told me that she was going to have some tests done and if the fetus was found to have Muscular Dystrophy (like me) she was going to have an abortion and "try again". I was shocked and suddenly panicked. It was my first face-to-face encounter with the idea that my disability was so bad it should not be allowed to exist. I must have looked confused because after a minute my mother said, "You wouldn't want to make someone else go through what you have to go through, would you?" Instantly, my shock turned to guilt. I felt ashamed of my selfishness. Of course, I would not want to "make" someone go through it!

Now I want to tell you about one of my earliest memories. I was around one year old. My mother was holding me up by my hands while my father moved my feet in steps across the floor. It felt wrong to me, as though they were throwing me into the air and expecting me to fly, and I fought them every step of the way! I knew absolutely that I was not meant to walk. It was a natural knowledge to me, as though I had made the choice myself, and I didn't feel any disappointment or tragedy in not walking.

Unfortunately, my parents still suffer an awful burden of guilt and disappointment over my situation. My younger brother turned out to be able-bodied. However, I cannot tell you how many times I've looked at my brother and thought, "If you had been like me, you would not be here." I ponder his accomplishments, his physical agility, health, relationships, his "bright" future prospects and I wonder what makes his life a blessing and mine a tragedy? Because I've spent my life dealing with issues of death, illness, pain and rejection, I am more adept at seeing beyond superficialities and I can offer unique experiences that may nourish our deeper, truer selves. How do we measure the worth of a life? Which life is the larger blessing?

I hope you will see that aborting a disabled fetus is not simply the "right" or "responsible" thing to do. Listen to your heart. If you decide that for yourself you need to abort this baby I think it's important to sort out that you are doing it because of your feelings or ability, not because there is something wrong with the baby that you are saving it from. Explain practical matters to Carla; explain your lack of time or space or money. Talk in terms of your feelings, what you can or cannot manage. Allow Carla to be upset. It is a loss. It might be nice to make an object for the baby so that you and Carla can honor and remember it's existence. By honoring this baby's life as valuable (whether or not you choose to birth the baby) you will also honor Carla and all of us with disabilities.
Nicole