The Face I Need
by Mr. Sheehy
I won’t easily forget Charlie. In fact, I think if I live for another 60 years I’ll still be able to recall Charlie’s name in a moment, as if he were my closest friend from childhood. He wasn’t a close friend from childhood though, and in reality I’ve never even carried on a conversation with him that lasted more than five minutes, but I remember him anyway. What I remember is his beaming smile, his eager touch, and his awkwardly loud greetings. I remember his being awarded a certificate for participating on the wrestling team in eighth grade and the standing ovation his classmates gave him as he ran to the front pumping his fists. I remember Charlie Helfrich, the oldest son of John and Anne, and I remember their unconditional and patient love for him, patience they need because Charlie is autistic and requires constant supervision.
When he received that ovation in eighth grade I was in college, substitute teaching in his school. I was convinced then that the ovation was an act of love, not patronization, and that Charlie had earned it. I think it was a response to what he had given all those around him in that school: raw love. I am also convinced that Charlie is not an isolated case, and that people with severe disabilities like autism and Down syndrome bless those around them each day with acts of love and dependence.
I’m thinking of Charlie today for two reasons. The first is that my wife and I are expecting our third child sometime in the next three weeks. We don’t know our baby’s sex and we don’t know if he or she has Down syndrome. We passed on the chance to find out because we do not see the point, especially considering that the test would risk our baby’s life (any risk is too big a risk in our minds). I’ve little considered the possibility of our baby having Down’s, but the thought crossed my mind last week as I drove somewhere – what if this baby has Down’s? Or autism? What will that mean? Am I equipped to give that child what he or she will need?
It’s a natural fear, I think, to wonder whether you are suited for giving your child what he or she needs. At least, it feels natural, and I would claim that it is since John and Anne had those curiosities about themselves when they first discovered Charlie’s autism. Such a fact is my greatest encouragement. They are so good at loving Charlie, so good at providing for him, at extending him the patience and love he needs, and at receiving the love he gives, that I would hope that I too would grow to become such a wonderful and unconditionally loving parent.
What I absolutely would not want, however, is to take that momentary doubt about my ability to provide and convert it into a selfish claim on the future. I would not want to indulge in a test like the fetal detection of Down syndrome and let it kindle a resistance to my child before my child has had a chance to love me.
Say we used the test and it came out positive. Then we would wait while our fallen imaginations watch Mommy’s belly grow. To us, the child as yet has no face, so we would likely draw one, forming a disfigured representation of our own fear and selfishness. What good can come from such anticipation?
For us, no good would come of it, and even though the medical community justifies the test with two reasons – the first one being to give the mother an opportunity to “terminate the pregnancy” and the second one being to provide a couple time to prepare emotionally for a baby with Down syndrome – the truth is that there is only one reason for the test. Though my comments make clear I have always felt the second reason (providing time for parents to prepare emotionally) to be a false front for the first reason, I discovered the baldness of the lie in a statistic I read today, a statistic that makes my stomach churn.
More than 90 percent of babies diagnosed with Down syndrome are aborted.*
This statistic is the second reason I am thinking of Charlie today. When I pair Charlie with this statistic (though I am aware Charlie has autism, not Downs), it means that more than 90 percent of babies diagnosed with Down syndrome are not given the time to confront their parents with the love they will have for them.
Oh, Charlie. What are we to do with such a world? You loved me even though I knew you only briefly, and even though the goodness I had provided for you was minimal and passing. For that, I need to thank you. I need to thank you because, for me, you have put a face on the faceless. When I think of my child and wonder whether he or she will have autism, or Down syndrome, I think of your face and its kind smile and I have the reminder I need that God will give me grace to receive my child’s love and return the unconditional love that only he can provide.
Thank you, Charlie.
Nicol, C. (2008). All too human. First Things 184. 47-49.
If more people saw life the way that you see it, what a wonderful world this would be!
Thank you for your article and your view on “Charlie” I hope that others see this and realize the importance of giving children with Down syndrome a chance to survive!
Mom to son with mosaic Down syndrome and president of International Mosaic Down Syndrome Association
We made the same decision with our third child. Our decision to have Jason would have never changed, but our expectations would have. The chance of harming Jason was not one we were willing.
There are some many Charlie’s in the world. I look at my beautiful baby boy and my two older “babies”, and remember how blessed I am.
While some may welcome the early warning/diagnosis of Down Syndrome, I would not have. Down syndrome has so many different symptoms and levels of ability, we would have gone cray expecting the worst. I just found out today that the official reccomendation American Association of Obstetrics and Gynecology is to abort when a diagnosis of Down syndrome is made. Disgusting!
[…] specifically and intentionally, and I want to pair it with another from the deeper past. I wrote about Charlie a couple weeks ago and expressed some of my thoughts as a parent facing the unknown, particularly […]
[…] under On Life | Tags: Down syndrome, abortion, culture | Thank you, Andy Crouch. Though I tried, I couldn’t have said it any better myself: The fact that this syndrome has become a reason […]
I also recommend “Sophie’s Option” at Sally Thomas’s blog, Castle in the Sea.
your grandfther and grandmother were being badgered by their dr. who was “saying you must have the test because of your age (over 40)”,,,,,and your grandfather was adamant that it not be done and they would not give permission….because “how could they not love any baby they would be lucky enough to have???” and your mother was born, beautiful, healthy, and very much loved.