The following is a draft of the article I'll submit to the BeNotAfraid site. It aims to be a resource for prospective parents who are facing a difficult prenatal diagnosis, and are trying to choose between keeping the baby or terminating the pregnancy. It is not exhaustive, so feel free to leave a suggestion for improvement, or ask a question that might need to be answered...
In February of 2001 my wife were expecting our second child. We had gone for the usual routine ultrasounds, and were waiting for the standard commentary from our obstetrician. What we heard instead was that the baby appeared to be having some difficulties. There were signs of congestive heart failure. It was explained to us that there were several possible factors which might be causing this. One factor was the possibility of a genetic abnormality. We consented to having an amniocentesis – a genetic test. The results of the test confirmed to a high degree of probability that our second child had Down Syndrome, or Trisomy 21. We were asked if we would like to terminate the pregnancy.
Our first reaction to the news was akin to grief. As parents we want our children to be healthy, happy and we desire them to grow up to lead full lives. We already had a wonderful healthy daughter, and we felt grief that this baby was already suffering from a heart condition in the womb. We felt a sense of confusion - - we were on a steep learning curve: Trisomy 21, Down Syndrome, ASD, VSD. We felt there were so many new terms being thrown at us we hardly had time to digest the information, let alone deal with the reality of it.
We chose to have the baby. It was in some ways an easy decision, and in some ways very difficult. It was easy in that we already loved the child – we wanted to be parents, we wanted siblings for our first daughter. And we both felt that our responsibility as parents began when we chose to get pregnant. It was difficult in that we had no romantic illusions about what parenting this child would mean. It would mean sacrifices – physically, emotionally, perhaps financially. What would this child’s future be? Would be caregivers for the rest of our lives? How would this impact our marriage, our family, our careers?
As we look back, a big part of the choice had to do with the difference between love and fear. I work in a major Canadian university with a large teaching hospital. I have many friends in professional fields of health care, education and counseling. As we became more educated about Down Syndrome, and got in contact with people in all of those fields, we began to ease the fear that can easily overwhelm parents of children with disabilities. I am also an ordained Anglican priest – our faith in God is part of our lives and we trust that Jesus and his way of life are part of our decision making. As we look back on that choice between love and fear, we recall the saying from the Christian Scriptures that “perfect love casts out fear”. We believe that God is on to something there: that so many of our important decisions in life have to do with the choice between love and fear. We could choose to love this child (no matter what), or choose to be afraid of the future, of how this person would change and affect our lives. In choosing to have the baby, we did not think God would magically “rescue” us from difficulties now or in the future, but that he would give us the courage to learn how to love more deeply through whatever the future may hold.
Today Sarah Joy is 4 years old; she will be attending the local preschool this fall with her neighbourhood friends. And the journey has been both difficult and rewarding in many ways. Such things can really only be lived, not explained. We have been through surgeries and specialists, developmental and education programs, and we continue to love her through everything. She is a great little sister for Emily, and she is a caring big sister to Adam. She has taught us something about the difference between love and fear, and continues to live up to her name – she is full of joy, and shares it with those around her.
Joe, thanks for sharing! I gained strength from your article. It is all a matter of perspective and how our minds can adapt to the things dealt to us!
Posted by: Shirley perry | September 10, 2005 at 10:13 AM
Joe, thanks for sharing! I gained strength from your article. It is all a matter of perspective and how our minds can adapt to the things dealt to us!
Shirley
Posted by: Shirley perry | September 10, 2005 at 10:14 AM
Beautiful. As a writer, I am wondering some things. Did you have a maximum word count to deal with? Also, I'm not aquainted with the publication, so what I am going to say needs to be tempered by that. What I feel that I'd like to see here is for you to relate some idea of her as a person for whom your love outweighs the cost. You have told us, but you have not shown us. I appreciate all the rest, however. I've had that moment--not a decision--but fear about what I had to face in the future when my infant son was diagnosed as epileptic.
Posted by: Annie | September 10, 2005 at 12:57 PM
thanks for your comments. Annie, I'm not much of a writer, so I could use some editorial guidance (maybe if I could email you privately & get some feedback as I work through the drafts??).
Joe
Posted by: Joseph | September 10, 2005 at 02:38 PM
Considering the mess I made of that last sentence in my last comment, I'm honored that you would thing to ask. I'd be more than glad to take a look at it as you work through it. Although, I will say that I've read many pieces in print that are every bit as well done as this, it could have a more heart touching element to it.
Annie
Posted by: Annie | September 10, 2005 at 06:58 PM