First, a confession: When Mother Talk offered "A Road Map To Holland" by Jennifer Graf Groneberg up for review, my first thought was "Aha! I want to be on this book tour - I'll be able to relate."
When the book arrived, however, I had misgivings. I wondered how it might affect me emotionally. Well, typically I like to be affected emotionally by the books that I read, but I worried that it might be a bit too much. But I'm generally pretty comfortable discussing the circumstances of my own children's premature birth, so I dove in.
And wept my way through the entire book.
Five days after the premature birth of the author's twins, one of them was diagnosed with Down Syndrome.
It plunged me right back there, thirteen years ago in the NICU...feeling the same fears and heavy guilt and grief and helplessness and the ever-present "It's NOT FAIR!".
Struggles with disrespectful and uncaring doctors and nurses, with friends who turn away, with the TELLING of the news...and the love and support from so many unexpected sources.
"I hate my weakness. I hate my fear. I hate my selfishness. I hate the NICU, and the cheery nurses in bright colorful caps. I hate the niceties, every 'Good morning!' and 'You look wonderful!' and the standard response to any question about the babies: 'They're doing great!' As if I can't see the state of affairs clearly, as if I'm a child that needs to be handled, or an imbecile."
I also spent some time angry at the author for some of her feelings, only underneath it wasn't really anger, it was shame - because some of those same thoughts could've come right out of my head. Like wanting to run away, or stick my head in the sand, or just...not deal with anything.
"Breathe, baby, breathe."
"Please, baby, please. Please, come back to me."
People ask, "Hoping for a girl or a boy?" and we reply, "Doesn't matter, as long as Baby is healthy!"
But what if Baby (or in my case - and the author's, BABIES) is NOT healthy? Does that mean you don't have to step up to the plate and parent? Is that a deal-breaker?
No, of course not.
If I'd have ever been pregnant again, my answer would've been "Doesn't matter, as long as Baby is alive."
"I haven't held the twins. I've barely even seen them."
Jennifer's twins were born several weeks early, by C-Section. It was difficult, having them whisked away to NICU immediately. No cuddling, no bonding, no shared happy tears. Only the vague nausea from the anesthesia, the sort of...emptiness and sadness, the feeling that something is off.
"While we were waiting, a nurse I had never seen before comes up to me. 'I wanted to tell you,' she says, 'that there's a waiting list for babies like yours. People waiting in line to adopt them.'"
Jennifer Graf Groneberg takes us through her spectrum of overwhelming emotions, being brutally honest about her reactions and thoughts. Courage is something she doesn't appear to lack, because it's hard to admit to some of those feelings. It's shameful to admit when you think of just running away, or consider (however briefly) letting someone more "qualified" have your baby.
Man, this is hard.
Jennifer brings you into her life, on the journey from birth to the NICU through the first couple of years...and it's a heartbreaking and beautiful story.
Whether you have children or not, whether they're disabled in some way or not, read this book.
At the very least, it will help promote understanding, especially if you're faced with a situation in which you don't know what to say or how to be a friend to someone with disabled children.
READ IT.
You'll thank me later, I promise.
"Emily Perl Kingsley is a mother of a son with Down syndrome. She's often asked to describe the experience...help others imagine how it would feel. It's like this, she says: expecting a baby is like planning a fabulous trip. Everyone you know, including you, is planning to go to Italy. But after months of eager anticipation, you get the news that your arrangements have changed. You still go on a trip, but not to Italy. The place you're in isn't a bad place, it's just different. Slower-paced. Less flashy. Instead of Italy, you're in Holland. She continues the metaphor, allowing for the disappointment of missing out on Italy, like everyone else. But still, she says, once you get acclimated, you might find there is much that is good about Holland."
I live in "Holland" now, and there's no place I'd rather be.
