Once every month or so, I go to Google or Twitter and type in “Wolf-Hirschhorn Syndrome” to see what’s percolating out there, in the world of my oldest daughter’s syndrome. This typically nets broadcast and local news features about fundraisers for children with WHS, to help with medical equipment or procedures that insurance won’t cover.
(Occasionally the news is very grim. I don’t have the heart to share those stories.)
In summer 2020, I came across the news that a mother in the WHS community had a book coming out: RAISING A RARE GIRL: A MEMOIR (Penguin Press). I knew right away that it must be written by Heather Lanier, the incredible writer and essayist (The Atlantic and Salon) behind the blog Star in Her Eye about Lanier’s daughter Fiona.
Rich in detail, deeply insightful and overflowing with heart, Lanier tells stories with passion and power. When my daughter, Miss E, was very young (extremely close in age to Lanier’s daughter), my mom routinely sent me links to Lanier’s blog posts. The few that I read were incredible.
But at the time I was completely snowed with doctor’s appointments, therapy sessions and feeding challenges. I wasn’t reading much of anything. Then, when Miss E was hospitalized for a grand mal seizure at 10 months, I found out I was expecting my second daughter. The tailspin never stopped. Within three years, I had three baby girls. I always intended to get back to reading Star in Her Eye, I just never quite could.
When I saw the cover of RAISING A RARE GIRL: A MEMOIR, and I jumped at the chance to dive into Lanier’s writing and personal account. Timing is a funny thing. Around the time that it published, a friend also shared Lanier’s TED Talk, which I had somehow never seen but learned has been viewed 2.5 MILLION times. (Like I said, I was living under a rock and essentially under house arrest.)
All signs just kept pointing me to the story of Fiona, and at last I was ready and able to dig into RAISING A RARE GIRL. The experience was singular. The only way I’ll ever feel it again would be to reread this exceptional memoir. And I might.
So much of Lanier’s story is precisely my story. I cannot stress how unusual this is. For frame of reference, Down Syndrome occurs in 1 in every 700 babies. Wolf-Hirschhorn Syndrome (4p-) occurs in 1 in every 50,000. Our early experiences were nothing short of identical. Just like Fiona, Miss E’s growth dot for height and weight was “in the bowls of the chart.” She too was too small for premie clothes. We fed her (unsuccessfully) every two hours and woke constantly through the night to ensure she got those (unsuccessful) feedings.
The similarities went on and on. The run-in with the geneticist (identical). The "purgatory” of entire days spent in the hospital (identical). The blow of seeing able-bodied babies everywhere (identical). And the relief of connecting with other families in the WHS community: “It was like we’d instantly been gifted close relatives.”
YES. THIS.
But our stories were very different too, particularly in how we processed the barrage of emotional and societal implications of this new life and how it abutted our preparations and expectations. Everyone brings their past, personality and faith into parenting, and it’s all the more evident in raising rare children. Lanier’s own life story is very different than mine, and I was riveted by how that rippled through her WHS journey. One thing that brought me back in tandem with Lanier, however, was that although I wanted “the uncertainty of our lives batted straight out of my life,” I too wanted my daughter as close to me as humanly possible.
Always.
If ever a person wondered what raising a rare girl is like, top to bottom, this book captures it. The moment of the memoir that brought it all together for me came upon Lanier’s realization that a love of music connects children with Wolf-Hirschhorn (4p-). Here, Lanier ponders this shared affinity:
But how could this be? People with 4p- shared an absence of something. How could this create a presence of something? How could deletion create addition? It seemed both a mystery and a metaphor. A so-called deficit could surprise you. A so-called deficit could create an attribute.
Viewing what is missing, what is delayed and what is different is the way of our world. As a parent, you see and feel it constantly. But the “deficit lens” is the wrong lens. A paradigm shift, as Lanier describes it, is all it takes to recognize that rare life creates.
As I reflect on our first holiday with Miss E, and look to the holiday season of 2020 ahead, I’m extremely thankful for Lanier’s book. I must confess, it was hard to read all that Fiona is now able to do (eat, walk, talk), particularly because Fiona and my daughter are so close in age. But I still hold fast to the shared truth that a mother so generously gave to our community and to all who desire to understand a parenting experience both rare and beautiful.
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