In the world of Down syndrome, there are many people who are beautiful writers, great thinkers, or tremendous advocates for our children. I have had the good fortune to have become friends over the last few years to a lady who manages to have all of the above attributes and then some. Passionate, engaging, funny, brilliantly in-tune with her children and her world, Jennifer Graf Groneberg has fast become a force to be reckoned with.
There are many books written on the subject of Down syndrome, myriad collections on the health effects of triplicate chromosomes, the effect on siblings, the education and care of the children themselves, even philosophical tomes that try to educate the masses on just why it is that children "like that" should never be born at all. But sparse few that dare to explain what it really feels like to be thrust into the world of Down syndrome with no idea whatsoever of what to do or where to turn.
Road Map to Holland (NAL/Penguin) helps answer those questions. I was lucky enough to have some "insider help" (thanks Jennifer!) getting a copy, and read it cover to cover and back again in less than 4 hours.
I must say, for the record, that I was quite excited to read this book, having seen some of the story unfold in real life and knowing Jennifer to be an eloquent and loving writer. I had always read her contributions to our shared Down syndrome board excitedly. She has a passion for our kids that leaps off the page, and like me, an overwhelming desire to help new parents find their way. So my disclaimer is this: I am prejudiced towards liking just about anything she writes, and may well have gushed over the book regardless of it's quality, simply because I adore her and her family. But that is not what happened.
This book was an engaging, emotional, familiar journey for me. My own child with DS is almost 10 years old now, and her life has been a joyful noisy experience. For the most part, I think I am "there" in terms of acceptance. I love this child so fully, I cannot imagine changing her or taking away the Down syndrome. Oftentimes, when I read a book by a "new" parent, I find myself nodding knowingly, happy that they have discovered something that is old hat to me. I feel like I have been through it, and I rarely find myself emotionally invested. I am happy for them, they made it, they survived and found the brilliant light on the other end. Like me. But this book left me sobbing, it pulled me back so many times that Jennifer might as well have been writing MY story. I was not just "the older kid's mom", I was that mom with the emotions pouring out of me, the gut-wrenching recognition of a different future, the mother of a baby in the NICU fighting for life, the guilt-ridden risk taker who should have known not to gamble on another child.
Jennifer is all of those women, she is every part of me as I went through this journey. She thinks like I think, feels like I feel, and gauges the world as I do, in terms of kindness.
She opens her eyes, reaches into the basket, and pulls out a bottle. She asks if she can touch me, and again, I say yes. She dabs some of the liquid from the bottle on her index finger, then taps each of my earlobes. I'm enveloped in fragrance-the white lilacs blooming in the moonlight. The heady peonies. Sun-dried cotton pillowcases. My grandmother's kitchen in the mornings.
"What is it?" I ask.
"Forgiveness," She says.
It is the one, perfect word. I crack. tears flow out of me like a river flowing to the ocean. I have so much guilt.I was too old to have a baby. Or it's deeper within me, a rotten core of bad genes that Avery has to pay for. My selfishness, my doubt. It all comes pouring out.
"I was so afraid," I say.
I thought I was more "there" than I was. Reading this book showed me that there still are some little wounds that need tending, some forgiveness that needs to be given. In her words I recognize how hard I have been on myself. If I can forgive her her worries and fears, well then I can forgive mine, too.
As I tell her my story, I can feel the sadness lift from my body, replaced by a newborn tenderness. It is forgiveness, for Avery and for me.
A few days ago, I received a beautiful short email from Jennifer. She said:
You have been an inspiration to me, and I can't say it enough: your posts at Downsyn.com helped me envision a life for Avery. A life of hope, and of possibility. And it was Ciarra's eyes that made me see this: literally! Her eyes are the most beautiful I have ever seen and I remember thinking, Wow. There's nothing but beauty here, she's stunning. And then I could see Avery that way, too. And now I see all our kids that way, and I really want to thank you. For helping me find the way "home."
Jennifer's book has shown me what it is besides the love of my family and closest friends, besides the love of this amazing child, that saved me. What saved me was the fact that I have had the privilege of telling my story to new moms over the years. I have been blessed with a child who's story has shone a little light on the Roadmap to Holland as it was written, and to have that light reflected back at me gently and lovingly by this tenderhearted and precious author.
Even if she wasn't my friend, even if I didn't think she hung the moon, I would highly recommend this book. For any parent that has grown up spiritually and emotionally as a result of raising their children, and especially for any parent handed a baby in one hand and a genetic diagnosis in the other, it is a Godsend. The Road Map leads to buried treasure. You find it when you least expect it, and it changes your life forever.
"That's the sign I want to use to tell Sarah what it's like being Avery's mom. Big love, big joy. Let go. Hug yourself and swing your body and smile and expect that the world will receive you just as you are, and it will. It will because you make it so, with all your heart and your whole body, smiling, swaying back and forth so fast and pure that the surety of it makes you dizzy."
Jennifer, thank you. I am truly honored.
Amazon.com's listing for Road Map to Holland