I am always, always looking for books that I, as the mom of a girl with what I lovingly call "issues," can connect with. Books about moms like me, moms who were surprised by a diagnosis or just tripped up by a change in life's plans. Books that are not overly religious or encouraging me to simply make the best of it. Books that acknowledge that sometimes life sucks and sometimes things aren't sunshiney and that you just can't always look on the bright side. Two that I had found up to this point were My Baby Rides the Short Bus (essays about having a child with special needs written by moms that I could identify with very strongly - I LOVE this book) and Schuyler's Monster (the story of a girl who cannot speak written by a father who tells it like it is, both good and bad). In both of these books, the child or children being discussed were not the same as my kid, but the emotions were often the same as mine, and the parents had similar world views to mine (at least sometimes). And I felt that once again in Road Map to Holland.
I found my copy of Road Map to Holland at a discount bookstore and picked it up with little to go on other than a vague recollection of seeing something about it somewhere. Sure enough, it's referenced in the back of My Baby Rides the Short Bus, and that reference even notes that the title may be offputting. Why, you may ask, would someone not be into that title? Because while the Welcome to Holland story is lovely, it's sometimes overused or turned into a one-size-fits-all tale for anyone with a child with special needs. I have my own take on this story, and maybe I'll share it in a future blog post. But it resonates with many people, and it helped Jennifer Groneberg, and I respect that.
This is the memoir of a mom who is thrown for a loop a few times in the early days of her childrens' lives. She needs an unplanned emergency C section for her twins. As a result, they're preemies who have to spend time in the NICU. And then she learns that one of them has Down syndrome. And she has to navigate all of this while also taking care of her older son, her husband, and herself. The emotions were raw and real. The talk of the alphabet soup of acronyms was spot on. The discussion of the avalanche of information available, overwhelming and helpful at the same time, was perfect. The struggles with what ifs and whys and futures...yes. And so while my daughter was not a preemie nor does she have Down syndrome, I still could identify with this book as the mom of a girl who caught me entirely off guard. It's a beautiful book, full of love, but it doesn't mince words and it's incredibly honest. It's going in my pile, with the other two books I mentioned above, to look at when I need a boost. "Hope is the note of all our songs," Groneberg writes, and I want to write that over and over and over. (I also found that Groneberg hasn't updated her blog in about a year and a half - I hope she comes back to it, because I really want to know what happened since she last updated!)
And because I know how Google spiders work, and because I'm always looking to connect with other parents who are like me, and because maybe you found this post via some helpful keywords, I'll give a bit of background on my own kid just in case. (And maybe someday I'll do a bigger post about all of this.) All things considered, my pregnancy was relatively uneventful. She was born just past full term. I had a wonderful natural birth. We left the hospital early. I began nursing her within an hour of her birth, and we never had any major issues (and still don't). We had no inkling anything was amiss until she was six months old (first-time parents and all that), and we didn't receive a diagnosis until she was about 13 months old. She has mild cerebral palsy, but we still don't know why. She's hypotonic rather than hypertonic (with some mixed tone). Her prognosis is bright, with doctors and specialists telling us she will walk and talk, sooner rather than later. She races around with a walker right now and has a few words and signs - and some definite opinions about her world. And we're still figuring her out, day by day. And I'm an indie funky crunchy mom who never stopped being any of those things. I don't fit into most support group settings - I'm too loud or too crunchy or too out-there or my kid isn't disabled "enough" or doesn't have the "right" kind of disability for the group. But that's OK - I'll find my own support team the way my kid has found hers.
So there you have it. Book one of 2011 - I'm hoping to read 100. I tried to make Great House by Nicole Krauss my second book of the year, but I just couldn't get through it - too dense, too twistyturny, and not where my head is at right now. I told you I rarely read fiction, though, and I can respect that this book IS beautifully written. But I won't finish it, alas. I think book two is going to be something light and ridiculous - watch for a review. Maybe.