The day after Julianna was born, Christian’s sister-in-law brought two hundred pages of info to the hospital, printed on once-used paper. The first page was “Welcome to Holland,” but the rest of it consisted of detailed information on matters medical, developmental and educational. It was exactly what Christian needed. For two days, he spent every moment poring over it, classifying, processing, organizing his thinking. That was how he came to terms with the birth of a child with Down syndrome.
But me? I wanted nothing to do with it. I didn’t think I could process it, and I was right. When I finally got started reading, my brain shut down in numb terror on page two. I didn’t want to know what was coming. To this day, I can’t remember all the things my child is at increased risk for, and I’m glad of it.
There is a story in the book The Hiding Place, by Corrie Ten Boom, that I think of often. She asks her father some question about sexuality, and instead of answering, he sets down his satchel and asks her to carry it. Of course, it’s too heavy for her. He tells her that “it would be a pretty poor father who would ask his little girl to carry such a load. It’s the same way…with knowledge. When you are older and stronger you can bear it. For now you must trust me to carry it for you.”
The abortion rate for children diagnosed prenatally with DS is somewhere between 80 and 90%. This is a horrifying number, but to no one is it more horrifying than to a parent of a child with DS. And yet, I understand the fear that drives it. A doctor’s job is to give you medical facts, and in these cases the medical facts are scary. Overwhelming, even. It takes either a lot of strength or a lot of grace not to give in to sheer terror, knowing what’s coming. There is more to life with Down’s than Scary Bad, but doctors don’t—can’t—give you anything objective to illustrate it. The up side of Down’s is revealed in the living. It’s revealed in the experience.
This is one of the purposes of this blog: to counterbalance Scary Bad with Overflowing Joy. But experience is subjective. It’s not something I can quantify, saying, This point, right here—this is where the scales tipped, and the joy outweighed the Scary Bad.
In fact, what is beautiful about life with Julianna is the same as what is beautiful about life with my other children. It’s giggles and cuteness—tickles and chewing—the awe in connections made, the wonder of character revealed. It’s interactions and relationships, cuddling and play time and the joy earned by giving joy. It is love given and love received. What tips the scales from Scary Bad to Overflowing Joy has nothing to do with Down’s. Down’s is part of the person, but the person herself–the human being–is the cause of our joy.
When I was in Ohio this weekend, I got to spend some real time with my three year old cousin with Downs. When I would start trying to fathom my aunt’s constant care-giving I would feel overwhelmed. But then when my cousin would sit in my lap and chatter and sign to me, I was overwhelmed in a totally different way. She is pure joy.
I’ve been struggling for a long time to articulate what was the good side of Down’s. This post grew out of the realization–which you just experienced, too–that the question is irrelevant. Down’s is like cancer or ADHD or a learning disability…it’s no fun, but that’s not the point; the human being behind the “condition” is the point; his or her value is no less because of it.
Yay…a great point!
I wish the friend of a friend of mine who just aborted her pregnancy with a child with DS would have read your blog. I cannot judge, since I’ve never been in these shoes, but it saddened me very much when I heard. Side note: it sounds like you and Christian did not know ahead of time that Julianna had DS? I wonder if a few months of pregnancy with that information would have helped or hindered.
It depends on the person, I think. Some people swear by the extra time–you get the grieving out of the way so when the baby arrives, you’re ready to rejoice again. But it’s also possible for the knowledge that there’s a “way out,” even if it’s contrary to your beliefs, to torture you for the rest of the time. It’s very individual.
Oh, Kathleen, I cry and I smile and I rejoice with you when I read your writings.. Thank you for our “take” on the world, your life, Christian’s life, and your family experiences. God loves you, and so do I. Thank you for making it all REAL!