Wednesday, April 2, 2008

Road Map to Holland

Road Map to Holland is written by Jennifer Graf Groneberg. It is a moving depiction of the first two years after the birth of her twin sons, Avery and Bennett. The boys were born 7 weeks premature after a difficult pregnancy. Tested in the NICU, it is discovered that Avery was born with Down Syndrome. This book takes the reader through the painful realization that Avery would be developmentally delayed and 'different' than the author's other sons.

Now, to be honest, I have to disclose that I've got twins that were born 6 weeks premature and one child had a fairly severe diagnosis even before she was born. Now my twins are almost 16, they are both special needs children, and I've experienced many of the same things as the author. However, my reactions were radically different and I had a difficult time reading much of this book because I just couldn't understand why Groneberg acted as she did. We're obviously very different people, but I felt that the book was highly self-indulgent and that Groneberg felt sorrier for herself than she did for her child.

I'm unsure why she didn't have the prenatal testing that would have helped her prepare for her son's arrival. I'm not sure why her reaction to having a special needs child was to call him "broken." Why she said that all her hopes and dreams were also broken because she didn't get what she wanted. That was hurtful to me, a parent that never, for one second, felt that way about my own special twins.

This book is well written, the prose is poetic at times, but the underlying 'feel sorry for me' attitude that pervaded the telling of this tale made it, for me, a very difficult read. I realize that I'm personalizing someone else's story, but I have problems with how seemingly ungrateful and downright embarassed she was about her newborn baby. Taking him out seemed almost impossible for her because she was so fearful of the looks she might get. As parents, we know that even the most perfect of children get weird looks. I just didn't understand Groneberg's attitude throughout the book.

As she came to accept Avery's differences and to come to terms with her own seemingly rejecting behavior, it was apparent that the bonding finally happened and her love for Avery grew. I'm happy about that, because no child deserves to be held at arms length by a parent that can't quite cope with the misfortune of rearranged chromosomes. Sometimes it just happens and the child should never be penalized for that outcome.

I'm glad I read this book, however much I didn't enjoy it. I think it has a place in the homes of any parent who has a special needs child, even one without Down syndrome. It is a valuable read, though rarely pleasant, that shows the difficulty of acceptance that some parents feel towards their special children. I think that's an honest representation of one way to look at acceptance, and I hope that those that do read it will glean something positive from the book.

This review sponsored by MotherTalk.

Jennifer Graf Groneberg’s Website
Jennifer Graf Groneberg’s Blog


jennifergrafgroneberg said...

Thank you for reading my book. I'm sorry it was an unpleasant experience for you, though I stand by my words. I told my own story, which of course is different from yours, or anyone else's. There are numerous books about unconditional love already published and I wanted to speak to the parents who maybe didn't have this experience, at first.

I love all my sons deeply and truly and if that didn't come through, it is a fault of my writing, not my heart.

apostrophe s said...

Margalit, I had the exact opposite reaction to reading Road Map to Holland than you did. I didn't feel the author was feeling sorry for herself at all. I think there's a big difference between feeling sorry for oneself and feeling SORROW, which the book conveys very well. How can one quibble with another's story, especially in what should be an 'objective' book review?

The book feels true to me. Graf Groneberg shares her feelings openly and honestly and for that I thank her. I think judging other moms with kids with disabilites tears us all down...and that her honest recounting (through vivid, beautiful prose) of her true feelings of learning her child had Down syndrome should be applauded, not villified!

I think this is a brave, honest book - that in the end, is actually a love story written for her son...and for all our sons and daughters.

margalit said...

Apostrophe s, Excuse me, but reviewing books for mothertalk involves giving an opinion of the book, and how the book affected ME. Not you, not anyone else, ME. And I struggled long and hard and talked to several other people on the review schedule about my feelings towards the book before I wrote my post. I'm very sorry if you feel I was vilifying anyone. I was not. I was clearly stating that IN MY OPINION, the way Groneberg handled the birth and subsequent two years of his life was not in any way how anyone I know with special needs kids acted. Her reaction was totally foreign to me, and seemed to be a bunch of 'woe is me' writing, something I just can't relate to.

Remember, I'm not quibbling with the story. The story is what it is. I'm quibbling with how her reaction to the story bothered ME, the author of the review. Just as she wrote stuff I could not relate to, I wrote things that she and you probably can't relate to either.

Not every review is going to be a good review. NOBODY gets all good reviews. And that's just how it is. If the book feels "true" to you, then you write that in your review. I never, for one second, argued that it wasn't true. I said that I felt it was self-indulgent and that Groneberg's reaction to her so was deeply disturbing to me, a mother of twins who are BOTH disabled.

Claudia said...

I find this review so odd -- I felt
Graf-Groneberg's account was honest and full of love -- your perception of her holding her child at "arm's length" is baffling to me. It almost seems as if you are suggesting that her starting point or feelings were somehow "wrong." How strange an idea that is to me! We begin where we begin -- if we grow through pain an love, moving to a new place, how can this be wrong?

I find your attitude smacking of...what is is it -- spiritual superiority? And very hard to understand. Sorry.

Cate said...

I just finished Road Map to Holland, and I'll say that it felt very close to my own experience. I know you're not arguing about the truth of the book, but when you say "the way Groneberg handled the birth and subsequent two years of his life was not in any way how anyone I know with special needs kids acted"....well, there are a LOT of people with special needs kids out there. Your circle of friends might not be representative, you know? And having someone express things that have gone unsaid is very valuable.

As for why she didn't have prenatal testing, she explains that in the book. Minor point, but saying you don't understand makes me wonder how carefully you read.

Anonymous said...

So why didn't she have prenatal testing?...this is the problem, this attitude that society blames us parents who have children with Down syndrome. The question I have to ask is why does this question always have to be the knee jerk response when they learn your child or baby has Down sydnrome? I had prenatal testing short of the amnio which the genetisist talked me out of. I can only guess your reaction and not relating is because your twins did not have a diagnosis of Down syndrome.

I find Jennifers reaction and experience in my own special needs community as very common. Remember everyones grief exerience is there own and I am happy Jennifer put a book out there that others can relate to and I am sorry you didn't relate to it, but I did.

I am happy that despite your reaction you do recommend others to read. This book is a must read!

Michelle said...

by your own admission, you had a prenatal diagnosis. Don't discount the benefit of knowing for months before your babies were born and having that time to come to terms with it. You had the benefit of time to research, learn, and prepare for a diagnosis.

In the rush and exhaustion of twins, preemie twins, I can imagine getting hit with one more thing is the straw that broke the camels back. Prematurity is one thing, the NICU and all of its attendant fear and aloneness is another, a diagnosis of Down syndrome another altogether.

I dont know what your child's dx was, but I can tell you this: the world is not welcoming in ANY way to children with DS. Our babies are aborted at a rate of 90+%. There is a terrible weight that comes with knowing that MOST of the world not only wouldnt have had your child, but that they blame you and your "old eggs" for the diagnosis. There is a tremendous amount of guilt, and it seems perfectly natural that she spent the early days feeling like she somehow caused this, by wanting too much, by being too old, by not being "satisfied" enough.

I dont think she resents Avery in ANY way. I think she feels protective, obligated, loving, motherly. She recognizes that she has no choice but to love her son, knows there is nothing else she COULD do, and that it doesnt take anything more than love to make it happen.

Of course, there is the other aspect too, the one that says "Gee, you COULD have prevented this by having testing done..." which leaves a big question in my mind...are you saying Jennifer could have avoided this?

Somehow you missed the gist of the book, the triumph over the fear, the love that replaces the fear, and the faith that there really is a reason for ALL OF THIS. Jennifer wouldnt change a thing. I wouldnt either.

I dont see her story as woe is me, but as "this is my story of love. If you are scared, its ok. If you think you are alone, you arent. If you arent sure what to do, just love them." I think it is exactly what it purports to be: a roadmap to Holland.

I also think that if the foreward was written by some of THE best and the brightest in the world of DS, then surely they know what they are talking about when they say this is a GREAT book for new parents. I believe that, and I will do all I can to get it into their hands.

Anonymous said...

Gosh Margalit, if I could count the number of self pitying entries in your blog, they would number in the thousands.

margalit said...

Michelle, I did NOT have a prenatal diagnosis for my daughter. My daughter had IUGR, which is not a diagnosis, but a reaction to other problems. I didn't have an amnio, but I did have all other tests. But the fact is, my daughter's problems, spastic quadraplegia (CP), microcephaly (abnormally small head), brain bleeds, eye problems, hearing problems and severe learning differences were NOT diagnosed in utero or even in the NICU. For the most part, my child was released the second she hit 4 lbs, and her problems all appeared subsequently. By 4 months it was obvious something was really not right. Her neurologist diagnosed her and she went into EI immediately.

Again, I'm not quibbling with the story... it is what it is, just as my daughter's story is what it is. I just didn't like the WAY the story unfolded. Maybe it was the writing, but probably not. I thought the prose was lovely and said so right from the beginning. Maybe it was that Jennifer seemed unable to love Avery right off the bat. Or accept him. Or stop worrying about what her community and neighbors thought. I don't know. I just didn't love the book.

I don't understand why this is such a problem. I also HATED lord of the rings. Does that make me a bad person? Or does it make me one that knows that some things that appeal to most people don't appeal to me. I loathe amusement parks. Does this make me perverted, or a person who knows her own mind?

As for anonymous...didn't mommy ever teach you that if you can't say anything nice (and apparently you can't) then don't say anything at all? Sorry but anonymous comments are gone. If you can't even SAY who you are, then my respect for your crap is about as much as my respect for what's at the bottom of the outhouse.