Welcome to Paradise

by Sarah Grandfield-Connors

There is a short essay called "Welcome to Holland" which is meant to comfort a parent who has recently received information that their child has some type of developmental disability. The premise is that you have booked a trip to Italy, but your plane was re-routed to Holland. You miss the idea of Italy, the culture of Italy may always be a mystery with its own language and art -- but Holland is stunning itself. Beautiful but different. 

When we first understood that things with Beatrix may not go well someone sent me this essay. It was welcome as an affirmation of the life I was embarking on -- the life I assumed included a child with Down Syndrome -- because whenever there's a problem in pregnancy, that's the "worst" that could happen, right? 

 (Disclaimer here -- I was excited about the possibility... there was a not so tiny part of me that was thrilled that I would be given the opportunity to mother a baby with exceptional chromosomes. I do not see a baby with Down Syndrome as a negative. It's just the first thing that people imagine when they learn that their baby is going to be atypical.)

I started my study of Holland. I began to learn the language. Its trisomies, chromosomes, and cardiac anomalies. Long words in Latin and Greek which mean your baby will face challenges beyond what we commonly think of when we think of Down Syndrome. I began to pay more attention to babies with enhanced chromosomes. 

Then she died. There was a lot in between preparing for Holland and her death- but this is about her death so we'll skip that other stuff.

 

I didn't get to go to Holland. 

And now, I don't really like that essay.

Because that essay lies -- it implies that Holland and Italy are the only possible destinations. 

Sometimes the plane crashes. You don't get Holland or Italy. You end up on a desert island somewhere in the middle of the sea. 

So, for today I am going to write a new essay, for those who didn't make it to Italy or Holland. My experience was carrying to term with a poor prognosis, so you'll forgive me for small parts of this which may not apply to the person who had no knowledge that they weren't going to Italy.

"Welcome to Paradise"

Expecting a baby is like preparing for a trip -- maybe to Italy.....  You buy books to prepare yourself for the challenges that are to come. You familiarize yourself with the customs and make decisions about the direction which you will take when you arrive at your destination. 

But on the way there you learn that your plane has been diverted. You won't be going to Italy, but to Holland. Thank goodness that you have the foreknowledge that you won't be landing where you expected to. You quickly Google the traditions and customs. You memorize a few phrases that will come in handy. You look at lots and lots of photos and read the recollections of people who have gone to Holland and found beauty in the land. You are disappointed that you won't get to see Italy -- but Holland is beginning to look like an exciting place to be. And the people who have been there before are so kind. Their personal recollections seem to welcome you, and answer all of your questions about Holland. Pretty soon, you feel confident about Holland. You feel like an expert. You've got the geography down. This trip will hit some bumps, because you've packed for Italy, but overall it is going to be a great trip. 

Right before landing, the lights unexpectedly dim in the cabin and the stewardess tells everyone to put on their seat belts because some turbulence is up ahead. The cabin is dark and all you can hear is the thumping of your own heart in this space. 

Suddenly, there is no noise except for that thumping in your ears and the sound of metal twisting as the plane hurtles downward through layers of atmosphere. 

You crash land on a desert island. You are alone. Occasionally you see the footprints of others on the sand of the beach. You send out smoke signals and see answering plumes from other islands. But at night when you lie down to sleep, you are alone. 

You lose track of the days and nights that you spend on the island. You have crash landed and nothing else seems important enough to think about. Occasionally you eat, mostly because you happen upon something edible, and not by any design of your own. You aren't even worried about missing Italy, and Holland is obviously in the past as well. Every milifibre of your being is concentrated on survival. You become stoic in the face of your own fragility and learn to maintain passiveness like a second skin -- good for those days when hunger overwhelms you and you can't find anything to sustain you. You sit in the shade of palm trees and remember Home. You don't think about what everyone is doing back there, because it's too painful to look in from the outside -- it magnifies your solitude.

One day you see a ship on the horizon. It is welcoming and wonderful. The people on the boat see you stranded on your little island and they send out a rowboat to pick you up. They invite you in, and you are so grateful -- hungry and tired you accept their offer. 

The boat brings you back to your starting point. It's not Italy or Holland, its Home. But home is different. Home is populated by people who have visited Italy -- and all they talk about is Italy. Every breath they take is full of Italian air, and when they bed down for the night their dreams consist of Italy and all of its charms. The entire world seems to center around Italy. They want you to look through their photo albums of images from Italy -- hold their souvenirs. Occasionally you meet a traveler who has returned from Holland. They are just as foreign as those who have visited Italy. They talk about tulips and windmills when all you know about is hot sand between your toes and the quiet hunger that gnawed at your insides. But all you know about is starving. Occasionally you hear of someone else's experience on a desert island -- you might even get together with another survivor.... But when you talk to one another, you realize that your island was nothing like their island, and you leave off feeling more alone than ever.

Eventually, people at Home start recommending you try Italy again. It's perfect this time of year and it will help you forget all of your troubles. You think about it, and there's a part of you that really wants to visit Italy. Part of you occasionally thinks of Holland -- but most of what's in you is certain that the plane will crash again, and you'll end up trapped on that island. 

It takes a long time, but eventually you work up the courage to purchase a ticket. More courage is needed when you step onto the plane. When the plane takes off, it's all you can do to keep from dissolving at every bump. When you are brave enough to look out the window you see small islands here and there with smoke stacks on the beaches. You have to look away. 

You {finally} get to Italy. And is Italy beautiful. More beautiful than you ever imagined it could be. But occasionally you walk too closely to the shore, you hear the waves crashing onto the beach, and it reminds you of the island and how you will never be the same. While you are in Italy, you sometimes pine for the island with its seashore and shade palms, but something about the lights in Italy catches your eye and you momentarily forget how hungry you were. 

Your trip to Italy is amazing. You come Home refreshed and with your own souvenirs and tales to tell. You are the only one who keeps the stories of the crash landing and the island at the forefront of your mind. Eventually, everyone stops asking about the island, your story becomes a memory best kept tucked away. But the island is always with you, in the muscles and bones that developed in the struggle to survive. It is the first thing you think of every morning upon waking -- for a split second you are disoriented and believe that you are still there. It always takes a short time to shake that feeling off.

On some days, you will purposely pull memories of the island out of the deep regions of your mind. You will go into your closet and pull out the tattered clothing that you brought back. You will bury your nose in the folds of the fabric, and you will once again be walking on the beach with your feet in the hot sand. 

For you, travel has forever been changed. No matter how many more trips you take, the memory of your heartbeat thudding in your ears will sit in your bones. The cool breezes and hot beach will, as well. You will come to understand that crash-landing, while not a positive thing, is an inextricable part of you now. And one day, you will recount stories of the island that make you feel good about your time there. You will always grieve deeply over that first, missed trip to Italy. But one day, a portion of your memories from that island will become treasured. On that day, you will begin feeling full again.

 

In 2010 my unborn daughter was diagnosed with the life limiting condition Limb Body Wall Complex aka Body Stalk Anomaly. We chose to continue our pregnancy and delivered her at 34 weeks GA. She survived for a beautiful 1 hour and 47 minutes. Since then my "mission" has been to find families facing this diagnosis, and who have decided to carry their pregnancies to term, and to share their stories in hopes of encouraging others to continue their pregnancies after a lethal diagnosis.