Heather House took one look at her infant daughter and knew.
This sudden flash of maternal instinct — the first that her newborn twins would be privy to — was flying in the face of science. All of the requisite prenatal testing had come back normal, with every indication being that both of her children would come into the world happy and healthy.
The modern medical machine got it about half right. Her son arrived as advertised, pink-cheeked and with fingers and toes in all of the right places.
Fern was a different story.
I thought Fern’s diagnosis was the end of the dream.
It took about 12 hours for another round of testing to confirm what her mother had already intuited, an insight that while impressive, had zero practical use as a buffer against a sudden diagnosis of Down syndrome.
How House reacted to the news would eventually become the fodder for the first chapter of her new book “This is What Perfect Looks Like.”
But first there was mostly a lot of panic.
“It begins with rejection and complete denial,” House said.
A ground-up look at the realities of raising a child with Down syndrome, “This Is What Perfect Looks Like” is House shooting for something honest — and the interloping anxieties that had arrived in lockstep with her daughter were nothing if not brutal in their sincerity.
Before the twins even left the womb, House was already developing prototypical photos of the all-American family in her mind’s eye.
“I thought Fern’s diagnosis was the end of the dream,” House said.
Perhaps sensing an opening, cold, hard practicality descended. House was afraid that the financial burden of raising a child with special needs would prove too much or that Fern would never acquire the level of independence she would need to function in the world autonomously.
My book is all about reconciling expectation with reality.
Not to be outdone, the blame reflex also kicked swiftly into motion. House had waited until almost her 40s to have the twins — could she have inadvertently placed her children at risk?
“I was really scared that people would blame me,” House said.
Almost three and half years later, House has learned a little something about the availability of government assistance, lost her faith in a higher power and written a book.
House has also found that her initial reaction to Fern’s diagnosis was not so uncommon among other parents of children with special needs. “This Is What Perfect Looks Like” was born of her desire to see that journey reflected in writing.
She’s hoping that her tome can be a resource for other parents blindsided by questions beyond the usual handwringing about names and preschool registration.
“My book is all about reconciling expectation with reality,” House said.
Right now, the latter is looking pretty good. House’s book, which is available on Amazon.com, has already sold more than 300 copies and she remains a devoted mother to Fern.
“It’s not that I made room for her. I chose her,” House said.