Within the community of families with special-needs children, there is a well-known poem/essay called “Welcome to Holland.” It became famous in this community because some loved it and felt it really spoke to them, and some found it galling and infuriating. In “Welcome to Holland,” the writer, Emily Perl Kingsley, compares life with children who have special needs to a flight she expected to arrive in Italy, only to touch ground permanently in Holland. The rest of her life is filled with experiencing all the real, tangible beauty of Holland, even as she has to hear all the stories of Italy she will never experience firsthand.
It’s an obvious metaphor, and certainly simplistic, but it’s easy to see the comfort it might provide. Few pregnant mothers dreamily stroke their stomachs and imagine the beauty of the metaphor in which Holland stands for a life of health struggles and emotionally draining paths to seeing one’s child’s basic needs met. However, once they stand in on the tarmac in the strange land they’d never considered, it’s only human to peer into the distance and seek out the tulips. Those tulips are real, at least some of the time.
Nowhere is that search for the beauty in their journeys clearer than on the weekly “Disability/Special Needs Blogger Weekend Link-up” on the web site LoveThatMax.com. Ellen Seidman, the author of the blog (originally inspired by her charming son Max and his life with cerebral palsy), opens a post each week for other writers to share their stories, linked directly to their own blogs. What shows up there each week is a magnificent collage of life in and around the proverbial Holland. Within the past year, I’ve read about incredible advances in research; stories of maternal love so gorgeous they make me hold my breath; daily struggles to be understood by close family and friends; and pauses to peer back at the length of the journey so far. After discovering her on LoveThatMax, I’ve fallen utterly and completely in love with the voice behind Itty Bitty Yiddies as she chronicles a magical-sounding life in the woods contrasted with her constantly vomiting, fiercely loved toddler.
Fighting against my own nagging feeling of not-belonging, I often share my own writing on the LoveThatMax link-ups.
There is a reason for my sense that, maybe, I’m squeezing my story in where it doesn’t fit. That reason is: while I didn’t know it at the time, I was only visiting Holland. After my daughter, Sammi, had major cardiac surgery to correct a double aortic arch, she was only a year old. Shortly after the surgery, her pediatrician sat me down for a serious conversation.
“Listen, mom,” she said, “I don’t want you to wait to call me if you’re worried about anything with this one.”
“I won’t,” I said, holding my squirming baby closer.
“I mean it,” she repeated, looking me right in the eye. “When something goes wrong in the womb, like this, it’s a moment in time. You know what I mean? Something stopped, in that moment. Something didn’t go the way it should have. And when something stops like that, it’s not usually just one thing.”
I stared at her. “You mean, there could be more problems like this one? More things that didn’t develop right?”
She nodded. “My antennae are up with this kid,” she said. “Yours can be up, too.”
For years, I left my antennae high up over my head, scanning Sammi up and down and all around, every day. When she didn’t eat well, when she couldn’t focus on reading well, when she said the food came back up in her mouth, when she didn’t grow, all the time, my antennae kept signaling alarm. When we finally came to the conclusion of years of sleuthing, weathering one last terrifying surgery, and Sammi was finally well, I reached up one day to find my antennae almost completely gone.
Shortly after that, I boarded a metaphorical flight to Italy.
I have nearly a decade of photographs of our time in Holland, and deep muscle memory of the hikes we took through streets littered with IV poles, medical tubing, oxygen masks and medication. Sammi has visible scars from the injuries she sustained, and her older sister still holds her hand out to steady us while clenching muscles to hide her own vulnerable spots. My husband and I still see with peripheral vision around many of the fields of tulips we remember — how there were needles in the ground under the leaves.
But now I’m sipping prosecco on the piazza, and I feel guilty and relieved and empathetic and angry, all at once.
I don’t share Italy stories on LoveThatMax, only the stories that can offer some connection to the families there who are still in the thick of it and, for most of them, who will always be. I hope that what I share belongs there even if my current reality does not. The stubs of my antennae are always twitching, sometimes imperceptibly. I keep my finger on the pulse of hope and survival and humanity and compassion in full offer on Ellen’s site, and whether “Welcome to Holland” seems lovely or laughable, I send beams of love across the ocean and the continental land to reach them all.