Wednesday, April 2, 2008

MotherTalk book review: Road Map to Holland

Holland 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.


Beruriah said...

Looks like a book to put on my list.

The 90% stat. I do understand her feelings about it. I am pro-choice, and not in the "I wouldn't choose it for myself, but...." mode. There are situations where I would choose it. The situations we know of in blogland being the cases in point. Still, with my nephew C. having spina bifida, the story becomes so much more difficult. I wouldn't presume to make decisions for other families, but it hurts to think someone might think C. shouldn't be here, or to think that he could be even more alone as a child in a wheelchair because those like him were terminated. But I wouldn't want to set limits for which cases are "bad enough."

I don't know. Like you, I think respect and care is important. Good review.

loribeth said...

Sounds like an interesting book. A friend from my pregnancy loss group (a stillbirth, a m/c & 2 living children) recently gave birth to a Downs baby, after being offered the option to terminate. I have no idea what I would have done in her shoes. The little guy will require heart surgery, but is doing well so far. I will let her know about this book.

Tash said...

Thank you so much for this Julia, I'm putting it on my list as well. I have a real "there but for the grace of god" complex, which like you say upfront, is rather facetious of me to think I could grasp even remotely no matter how honest the book.

But: I think the magic word here is "choice." There is a choice. There have been times in other countries where she wouldn't have had hers, either. Some chose her life with eyes wide open, others don't. It's hard after a life of infertility and loss to wrap ones head around it, but in the end I think we all do what's best for us and our families, regardless, and that? Is a choice no matter what the ultimate decision is.

Anonymous said...

Thank you, so much, for this open and candid review. I've been _wishing_ someone would talk about the prenatal diagnosis statistic, because I think there is much to say. And I think so very often, issue of abortion becomes clouded with emotion and rhetoric that hurts everyone.

If I seem judgemental in the book, that is a fault of my writing. What I feel is that women deserve full disclosure when making a choice, and I don't think the medical profession has held up its end in the job of explaining all the choices (here I'm thinking of Skotko's studies). We are not babies, we do not need to be coddled, we do not need to be told what is best for us. We can be given information, and resources, and make the best choice for ourselves, with the help of our friends and family and whatever faith structure we follow.

Here is where I bow out. I don't have anything to say to that woman making the choice, once she's been given all her options. Except, maybe, to wish her more and better choices, which we (as a society)have yet to create.

Tash said...

Came back here to add something I forgot, and see Jennifer commented -- thank you for taking the time to explain. You're right -- society as a whole needs to be more welcoming of "choice" in all scenarios.

I was going to say re: friends dropping out that given what happened to us after Maddy's death, that I sometimes find myself (dare I say it) relieved that she is not here to see it. Because had she lived, these people would not just be rejecting us (and we're grownups, we can handle it), but rejecting A CHILD. OUR child. I know now the cloth from which they're cut, and I'm disappointed.

Julia said...

Thank you, everyone.
I was feeling a bit nervous last night putting the post up. So thank you for the honest reactions. I do think there is much to talk about with respect to how our society values people and how it supports (in many cases does not) various choices.

Jennifer, I am actually relieved to hear that if I stepped onto a mine field, it was one you wanted someone to step on. The thing is, I agree very much with your comment-- much better education, and loads more support are needed. And, of course, respect for us as parents and human beings. (A huge reason why I love my OB is that he treats us like that-- with respect and honesty.) Having education and support would make for more informed choices, and that, not eugenics, really should be the point of prenatal diagnosis, IMHO.

christina(apronstrings) said...

how could anyone judge women in that position. though, i think, most of judgment is just a projection of how we are really judging ourselves. that is,-a bitty, bitty part of her-wished that she could ahve had at least the choice to decide herself.
you really make me want to read this!

Bon said...
This comment has been removed by the author.
Bon said...

sorry, let me try that again.

i haven't read the book though i'd like to.

i will say that i can see how Jennifer could easily call women who choose not to terminate "our hope," as most actively involved parents of children with Down Syndrome are fighting an uphill battle these days to protect both services for their children and also the mainstreaming and inclusion and moderately positive attitudes that were fought for - and to an extent, won - a generation ago. these days, with 90% of parents who get a diagnosis of DS choosing to terminate, children with DS and their families face increased prejudice and also fewer resources for support.

and she's right, the medical community does not make a great deal of distinction at the time of screenings and u/s about how a child with DS without further complications can live a full and enriching life...thus that message - which is obviously central to her own family - becomes increasingly marginalized. i would guess that if "why?" does get read onto her family every time they go outside their house, judgement of the 90% directly causing the shift - or backslide - in public perceptions would inevitably become hard to avoid completely.

i say this as both a special ed teacher and as someone facing a variety of soft markers for DS in a pregnancy we're struggling to maintain. we've already decided that in the instance of a trisomy 13 or 18 diagnosis (both incompatible with life), we likely WILL terminate, with great i'm big on choice, indeed. but T21(DS)...much messier, to me, and a decision not fully yet made.

Lori said...

Well, if there is one thing I am sure of it is that I can count on you to dissent respectfully. I thought this was a very thoughtful review.

Your point of dissent reminds me very much of some of the arguments I have heard within the preemie community. Those who advocate for more education and "choice" with micropreemies, and those who look at their own surviving micropreemie and can't imagine there being any other choice than aggressive intervention in every case. I intentionally try to stay away from such discussions now because not only are they personally painful, but they are rarely conducted with respect and openness. I commend both you and the author for being able to accomplish that difficult balance.

There are so many gray areas in these difficult choices. And all too often we have to make decisions based on limited information and under high emotional stress- not a good combination. I am always a supporter of better prenatal education and carefully presented options on the part of medical professionals. Parents under emotional stress are so easily swayed to one viewpoint or another when faced with the perspective of an "expert" and yet they are the ones who have to forever live with the ramifications of their "choice." (I place choice in quotes because so often it is such a Sophie's choice that I'm not sure it can accurately be described as choice.)

Anonymous said...

Oh how I love all these excellent comments, and I so appreciate the conversation. The chapter about that statistic was one I had in the book, then out, then in, then out, and I talked about it with anyone who would give me their time. What I found is that it's a very difficult discussion to have, even with close friends. Sometimes especially with close friends.

In the end, I had to leave it in. It is and was a part of being Avery's mom, and I didn't want to avoid it. That would have felt like a lie by omission.

Aurelia said...

I would like to add to this Julia, you know my story as do others...something odd that never comes up in these discussions online about DS babies and choice is the other stats that geneticists do tell the patients, but don't percolate into the media.

90% of DS babies are miscarried or stillborn from very early pregnancy to term, and 40% of these deaths occur after diagnosis at 18 weeks. Literally, just because a woman makes a choice not to terminate does not mean the baby will make it.

And if the baby makes it to birth, many many of them die in the early neonatal period depending on what kind of medical needs they have. Besides hearing this from my geneticist, I've also heard about this from members of my support group, some of whom did choose not to terminate and then had to watch their baby die anyway. In pain.

And the one stat I always focus on, is that a chromosomally damaged fetus = a chromosomally damaged placenta. And a damaged placenta can mean serious extreme health risks for the mother.

Some Doctors disclose this during diagnosis, some do not, but women need to know that there is a risk to their own health and it's not just about the baby.

So to me, yes, I'd like women to know more about the choices and chances they take when they carry a baby with a birth defect to term. If they know the risks and still do it, then honey, I'd fight for the right of women to make that choice, but we have to stop assuming that it is always our choice to do it.

Sometimes, things can't be cured or fixed, and the DS children who do happen to make it, are actually rare survivors, and not just here because their parents decided not to end the pregnancy.

Wabi said...

Having not read the book yet,I guess I'm not sure about what sort of metamorphasis Jennifer Graf Groneberg went through regarding the choice of abortion. Is she now completely anti-choice for all? Or has she simply shifted her opinion of what she thinks she should have done, had she actually been in the position to make an informed choice regarding Avery during pregnancy?

Anonymous said...

I understand where Ms. Groneberg is coming from, and I think it's an utterly natural place, and doesn't necessarily speak to "choice" or "anti-choice." (as I don't, here)

When you love someone with every fiber of your being, when you see them discovering the world as all children do, coming into themselves, maybe at a different pace, with different insights-- the idea that other people might perceive your child's life as not worth living is horrifying.

Because if we're honest, most people's gut reactions are not usually based on congenital heart defects(although that and many other considerations are certainly there)-- but I would argue it's about the difference. The squashed face. The flat nose. The slowness. The stigma. Fearing years of "special services" ahead. The fear of being chained down, for life. The fear of them growing up, becoming sexual, becoming more and more "other."

So when you are parenting a child, and you go through the heartache and the pain and the worry along with the joy and the elation and the deep, deep love --- all of it-- you want other people to know that the picture most of us have is founded in fear.

Julia said...

Wabi, here's the quote about that pro-choice event that I think sums up the change:

I used to want to be a part of it. But this year, I don't know that I'd go even if I could. The reason for my change of heart is a statistic: 92 percent of women who receive a prenatal diagnosis of Down syndrome terminate the pregnancy.
Before Avery, I would have said,
Fine. That's their choice. And I would have meant it. Now, on this new flipped-coin landscape, I can't say that anymore. I take the termination statistic personally. Nine out of ten women at the Blue Mountain All Women's Run would make a different choice about Avery. He is the child they would not have had.

Jennifer, if you are still reading. I should've added to my review that more than a few times, starting with page 1, the book made me cry. Thank you for taking us so openly into your world.

Anonymous said...

I'm still here!

Thank you, Julia.

Interesting points about statistics, aurelia. I do not know your story but I'm glad to find you here.

The anonymous commenter made me cry: your words are exactly, precisely right. To the letter. That's how I feel, you say it perfectly.

Lisa b said...

Great review Julia, I cannot wait to read this book.

I have always been pro-choice but knowing that many people would choose not to have a child like mine is difficult.

On the topic of Informed choice, Aurelia and I see some of the same doctors and it is very surprising to me that they never mentioned any risk to my health. My pregnancy came to a rather terrifying end and I think since a genetic problem was suspected I should have be made aware of the risk to me as well as the risk of her being born prematurely. The risk of preeclampsia with Sotos is about 15%. I don't know if that number would have changed my mind but knowing what I know now I can understand completely why someone would not want to take that risk.

Of course as my daughter grows and as I fall more and more in love with her, it makes me sad to think that babies like her might not be born in the future.

Antigone said...

I don't know what I would do in those shoes.

For me what I find encouraging is that studies have shown reliable fetal dna testing using maternal blooddraw at week 10/11 LMP.

Anonymous said...

Aurelia - I have to thank you for your comment "90% of DS babies are miscarried or stillborn from very early pregnancy to term, and 40% of these deaths occur after diagnosis at 18 weeks. Literally, just because a woman makes a choice not to terminate does not mean the baby will make it."

I fall into that category. My daughter was dx with T-21 with heart and digestive disorders. Prior to getting the results of my amnio, I had been experiencing severe pain. Sharp, shooting-stabbing pain which started at about 15 weeks and continued until after my u/s results.

I admit that I was one of those 90% stats that tx my pg - but it wasn't based on the fact that my daughter had Ds alone - it was based on her heart & digestive disorders and the fact that three different doctors said I would not be able to carry her to term.

At the time of my tx, I was already dialated and starting to m/c - at 18.5 weeks. Those stats that not all babies with T-21 make it to term are real; just often ignored.

Thank you to all the ladies for such a cordial and well rounded discussion of this book.