When MotherTalk sent out a request for reviewers for Jennifer Graf Groneberg's Road Map to Holland. How I Found My Way Through My Son's First Two Years with Down Syndrome, I asked to be included, because, I wrote in that email, I think I am trying to understand as many aspects of the mothering experience as I can.
Mighty ambitious of me, almost arrogant, don't you think? To think I can understand someone's experience, experience of which I share no part at all, by simply reading about it. Perhaps I should've said I want to catch a glimpse of a mothering experience not my own.
But I'll tell you what. If you would read this book to catch a glimpse, by all means, pick up a copy. If you would read it to gawk or to judge, then don't. Because this book is nothing if not honest, and as such it deserves a reader who comes to it with an open mind at the very least. It's not just a retelling of a story, it's a baring of a soul. Jennifer admits to shock, to pain, to wanting to run away, to exactly how much it took to bear up and face the life she didn't plan on.
Pregnant with twins, on advice of her doctor Jennifer forgoes amnio because all the markers in the screening tests look fine. The twins come early, and five days into a NICU life complete with long-distance commute, one of the boys, Avery, is diagnosed with Down Syndrome. Both Avery and his twin Bennett face health challenges due to prematurity, and Jennifer and her husband Tom (and their older son Carter) face life with a new diagnosis with long-term implications for Avery and for the whole family.
Jennifer doesn't snow us. She doesn't make it like all it took was love and a millisecond. Slow and steady, and, oftentimes, unsteady is how they made it. Like most of us, they didn't know more about Down Syndrome than they knew. At one point Jennifer tells us of the myth and facts quiz on Down Syndrome that she took, and failed. She describes a chance meeting with a person with Down Syndrome and not knowing how to act. She tells us of her lingering guilt over her actions in the early months of Avery's life. She also tells us of the moments of wonder and accomplishment, moments of clarity, and moments of insight. And, of course, love. You didn't think it wouldn't figure, did you?
One theme in the book that is sadly familiar to most bereaved parents, and to many infertiles is loss of friends. Only one friend Jennifer talks about becomes a former friend, abruptly and completely. But it's not a matter of quantity. It is a matter of rejection, and it cuts, deeply. On the flip side, of course, are the friends that don't flinch. Jennifer is rich with them, and I found myself glad for it. Not because it somehow makes up for the shitty friend, but because everyone should have friends like that.
Ok, time to fess up. There is an aspect of the book that challenged me immensely, and it is Jennifer's shifting attitudes on choice. The statistic is that 90% of women given the prenatal diagnosis of Down Syndrome terminate their pregnancy. It is no surprise that it bothers Jennifer, that it colors her views on things. She finds herself unable to go to the march for choice because, she thinks, 90% of women there would terminate a baby with Down Syndrome. I could let the mathematician in me argue with that-- it is a logical fallacy, of course. Supporting access to abortion doesn't mean one would choose an abortion for oneself, for whatever reason, and being against it on principle doesn't mean one wouldn't believe their own case to be one allowable exception-- just ask abortion providers anywhere. And even if it was true, even if statistics coincided, what? I decide, though, that it's not the point.
Jennifer comes back to that statistic, 90%, again and again. She calls women who choose not to terminate "our hope." Yes, she judges. And my heckles, they go up. I know women who chose medical termination, and don't think that in their particular cases it took less guts to make that decision than a decision to continue pregnancy would've taken. Hell, I don't even know that any decision of medical termination would be easier than deciding to continue would be. Avery is healthy. Some of the babies people I know terminated were anything but. Down Syndrome is one thing, and even that alone could be too much for some families to deal with. Down Syndrome with a severe heart defect that would necessitate surgery upon surgery with no guarantee of success but with a guarantee of plenty of pain for your newborn is a whole different thing. For some it would be worth it just for a chance, for others inflicting that much pain on their child is unbearable. An irreparable physical condition guaranteeing pain for life is a different thing still. I want to argue, I want to persuade, I even get that urge to judge her for judging.
Here's the thing I realize, though, a wholly unoriginal thing-- judging and screaming won't get us anywhere. Jennifer feels judged by the world, by her crappy ex-friend, by a thoughtless and stupid bakery clerk, by that very statistic of 90%. And so she judges back, probably without realizing it. Because her life is a good life in the end, and the instinct to prove it must be strong.
So I won't judge, and, if you share my leanings on the abortion spectrum, I ask you not to judge either. On this issue, I disagree with Jennifer, but I haven't walked in her shoes. She gives us complete honesty. Yes, even on this issue that she could've easily left out of the book, since she probably knows that many of her readers would be avidly pro-choice, just as at least one of her best friends is. So in that spirit, I disagree, honestly, but respectfully. For this is one thing I am taking away from this book-- if we are to glimpse each other's worlds, we should do that with respect and care.