I Wish Someone Would Have Told Me

I Wish Someone Would Have Told Me

On a cool March morning in 2011, my husband, my mother, and I found ourselves stepping across the threshold into a world we'd never known before - the realm of congenital heart defects. We were attending our 20-week ultrasound, a significant milestone in our journey of bringing our first child into the world. This appointment held the enchanting promise of revealing our baby's gender, but we had decided to embrace the trend of the time and keep this secret, even from ourselves.

The appointment had a rhythm to it. The serene darkness of the room, the warmth of the gel spread on my belly, the gentle movement of the ultrasound wand, the occasional click of the mouse followed by the technician's hushed typing. It was all as we'd imagined. But then, a deviation from the rhythm. The technician paused, dwelling for a bit too long, it seemed, on one particular area - the baby's chest. My bladder was uncomfortably full, the minutes stretching into what felt like hours, amplifying my anxiety. Upon completion, she ushered us into another room, assuring us that it was standard procedure to wait for a phone call from the doctor when there wasn't one on site.

My mother, needing a break, decided to take a stroll. My husband and I, confined within the small room with its closing-in walls, waited. Two chairs, a desk, a phone that seemed to mock us with its silence. He was blissfully unaware of my growing concern, growing impatient with the delay. I could only voice my intuition - something wasn't right. I shared my fear about the excessive focus on our baby's chest and heart, but he dismissed it as overreaction. Then, the phone rang.

The conversation that followed is a blur in my memory, but a few phrases stand out - "one chamber," "an issue with the baby's heart," "we need you downtown." That journey downtown heralded the opening of a daunting new chapter in our lives, filled with medical jargon, a barrage of doctor visits, heart-wrenching recommendations of termination, warnings about the strain on our marriage, and discussions about lifelong heart surgeries. We were introduced to the term "palliative care," and learned about the interconnectedness of the heart, lungs, brain, and digestive system. Those initial days, weeks, and months were a maelstrom of fear and confusion.

Over time, however, we began to see the unexpected blessings hidden in our journey. Insights we couldn't have gleaned at the beginning, but which I now wish someone had shared with us then.

Years later, I stumbled upon a poem by Emily Perl Kingsley, "Welcome to Holland." Whenever I encounter a parent recently initiated into this world of congenital heart defects, I am transported back to our own early days. But with the clarity that time and hindsight provide, I can now share this poem with confidence:

Welcome To Holland
By Emily Perl Kingsley
©1987 by Emily Perl Kingsley. All rights reserved.  
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.