March 8, 2009 2:38 PM
Road Map to Holland - Barbara Curtis's review
In Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome
This respect for individual experience, I believe, is a legacy of 12-step groups - which demonstrated the healing and restorative powers of identifying as a member of a group and learning to be transparent with those facing the same issues/challenges/opportunities. The mentoring process - seeking the wisdom of someone who's been there/done that - is invaluable, both for the mentor and the mentee.
When my son Jonny was born on March 31, 1992, there was only one book on Down syndrome for new parents - Babies with Down Syndrome. To this day, I am very grateful for that book and the hope it gave me. The voices of parents who'd raised children with Down syndrome were not that easy to access. I will never forget my excitement in 1995 when I found the Down syndrome message board and finally, finally was able to find a community.
For this reason, the publication of Road Map to Holland is cause for celebration. As is the fact that we now have the Internet and a plethora of books about Down syndrome - for parents and for children.
The downside is this: that Jennifer's story of her difficulties in making peace with having a baby with Down syndrome may be seen as emblematic of the journey that many mothers share - some of us who for whatever reason - prior experience, the grace of God - were able to embrace our child with Down syndrome immediately and with no reservations. And some who made peace with their new situation more easily and quickly.
Although the expectation here is that all mothers with children with Down syndrome would support and lavish praise on Jennifer's book - since Jennifer is a professional writer and as she was fearlessly honest in her criticism of other resources some parents have depended on - as Babies with Down Syndrome, which she found depressing - as we are careful to not patronize people with disabilities, I think it appropriate to share my true reactions to Road Map to Holland.
First of all, as a mother who did have instant acceptance of my child, while I completely understand and have compassion for the grieiving process many parents go through, because of my personality I must confess I lose patience quickly with people who need a long time to work through issues. Because my main life focus is "What is the Effect on the Child?" as I read Jennifer's to-her-credit brutally honest account, I found myself very depressed.
Jennifer is a brilliant writer and her flashes of insight - as when she gets honest with herself about how she has ignored people with disabilities in the past - are gems. When she takes us into the inner workings of her heart and mind - which helps us see inside our own - the effect is lyrical, never didactic.
I was grateful for those moments because too often the narrative of RMtH gets bogged down in the daily minutiae of raising three children under four - shifting them one from one piece of baby equipment to another, what she packed for them to eat, how they spent each hour at home.
Only a small amount of this would have done the job of establishing Jennifer's credentials as a mother who's been there/done that. I felt my eyes glazing over more than once - the same way I always do when I get to the Battle of Waterloo in Les Miserables. A good editor would have helped here, and RMtH could be much more of a polished gem if it had been cut by a third. As Mark Twain once said, "I would have written you a shorter note, but I didn't have the time." The best writing is when we let go of the stuff that doesn't matter and focus on the stuff that does.
What does matter is Jennifer's transparency in documenting her struggle with accepting her son with Down syndrome. Many women go through this struggle and reading this will help them let go of their own guilt. That said, for those who don't go through the same struggle, or for those who dealt with it more quickly RMtH may be in some ways a difficult read. I found myself sometimes just wanting to sit down and take Jennifer's hands and tell her to let go of her disappointment at losing the baby she expected and to just get busy falling in love with the baby she had. There's a lot of truth to the maxim that love is a decision, not a feeling.
I also was a little taken aback by her harsh criticism of resources from others who'd done their best to help parents of children with Down syndrome. Again, a good editor might have advised her to tone these passages down as her book would give her a platform of influence and that needs to be used more judiciously.
The bottom line is that RMtH is one mother's story and it may be a great help to many other mothers. Jennifer Graf Gronenberg was not simply a mother of a child with Down syndrome who wanted to tell her story, but a professional writer who had a child with Down syndrome and that story became her first book. There will probably be more to come, and for that reason we would be selling Jennifer short not to critique this as a literary work.
While I've expressed my reservations, please know that I consider the publication of this book a triumph for the Down syndrome community and I hope it leads to more - in fact, it would be wonderful to hear from a father.
And no question about it, Jennifer's writing is exquisite. Whatever she turns her pen to next will surely be a success. I am grateful for the love and sacrifice that moved her to write so transparently.
The title is a reference to Emily Perl Kingsley's famous poem:
WELCOME TO HOLLAND
by Emily Perl KingsleyI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved
Because my mission is to teach that Down syndrome is not the tragedy our society constantly tries to convince us of, I just hope that readers understand that among parents of children with Down syndrome, some of us got off the plane and didn't need a roadmap. Some of us looked around and saw the tulips right away. And the journey hasn't been one of pain and loss, but one of joy and discovery.
~~~~~~~~
Barbara Curtis is an author and mother of 12 - including four sons with Down syndrome (three by adoption) 8-17.
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Comments
I, like you Barbara, found almost immediate acceptance of my son. It was the day after he was born I marched down to the special care nursery and scooped him up with a firm commitment of a proud mother. At the time I had not consciously searched through prayer, or was a person with a strong personality. I think I just decided I didn't like the the mopey feelings of the doldrums I had been in on the day of Will's birth.
I have shared this experience with a few other people who are parents of a child with DS, and I always get a blank stare afterward. I have stopped sharing my experince as I get the feeling many are off-put by it.
Too bad, because that march down to the special care nursery has become one of the high points of my whole life. I even think of it as, quite literally, the first steps of an amazing journey.
Posted by: kelly | March 10, 2009 12:55 AM
My experience with Ds was similar. Though the diagnosis of Ds was a bit of a shock for me, it didn't take me long to begin the task of knowing and loving the precious gift of Miss R and the gift of the extra chromosome.
When I got home with my daughter (12 hours after her birth!) someone from our local Ds support group called to offer her ear and answer any questions. I was so depressed by this other mom's perceptions of her own trials and tribulations with her healthy daughter with Ds, I never attended a single Ds support group meeting!
Getting through a few major surgeries set me back emotionally but not for long. Some of our children with Ds are medically fragile and/or have multiple diagnoses and my heart goes out to them. I lost a child to congenital heart disease after multiple surgeries and procedures so I know personally how scary it is to worry about frequent medical procedures and perhaps even losing your child. The journey into grieving the loss of a child is the hardest thing a parent will ever have to do.
Life, all life, is precious so chose the joys and cherish the moments that come along with the journey. It may seem trite but its good to remember - 'God doesn't call the equipped, He equips the called.'
All that said, I loved Jennifer's book!
Posted by: Amy | March 10, 2009 7:06 PM
Thank you for your thoughtful and honest review of my book. I appreciate your taking the time to share the high points, as well as the low spots, in my narrative.
I wish I'd had an immediate acceptance, I truly do. And I think there are many books out there that speak to that experience, very eloquently. I wanted there to be a book for the other parents, the ones who struggle in the beginning. Because I've found that even in the rockiest soil, even from the most doubtful starts, love can grow.
Life's a journey! Thank you for helping me see mine through your eyes.
Best,
Jennifer
Posted by: jennifergg | April 5, 2009 4:20 PM
