Welcome to Holland
by Emily Perl Kingsley
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 stewardess 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.
I am absolutely in love with this poem. I don’t think anything could better express how I feel. When I found out that I was pregnant with our second child, I felt two things: shock and elation. We weren’t trying to get pregnant at the time, so it was totally unexpected. But we’d both wanted more children, so we really couldn’t be happier. So we started making plans.
We knew it would be a girl. It would have to be! My family doesn’t know how to create boys. There are girls running around everywhere! And of course, we knew she’d be perfect. Emmy certainly was, so why wouldn’t this one be? Besides, we don’t smoke or drink or do anything else that could possibly harm the baby. I took my vitamins like a good girl. I did everything I was supposed to do to keep the baby safe. And why shouldn’t she be safe?
At my 20 week ultrasound, the tech confirmed that it was a girl. We already knew that her due date was to be in mid-November, which was only a few weeks before Emmy’s birthday, so the clothes would fit perfectly. We thought we were so smart because we’d be saving so much money. I laugh at that now.
There was just one problem with the ultrasound. The tech was having trouble finding all four chambers of the baby’s heart. I didn’t freak out. It was just a fluke, and the baby was perfectly fine. The tech said that they probably just hadn’t gotten big enough yet for her to pick them up, so she wanted me to come back in two weeks to check again. Sure enough, I went back in two weeks, and the tech said she could see them now, so the baby was fine, just like I thought! (Later, when I learned that her problem was usually caught at the ultrasound, I realized that the tech had seen it and ignored it. I’m very angry about that now.)
We kept planning. We moved Emmy to a toddler bed so that we’d have the crib. We even rearranged her room, because they were going to have to share the room since we were in a two bedroom bungalow at the time. And yes, Baby Girl would sleep in her crib, in her room, from the get go, just like Emmy had done. Chris had started freelancing by this time, and his business was doing so well that he quit his “day job” at the office to work out of the house. Sure, it meant that we lost our benefits, but we got Cobra and that would last us for 18 months. By then, we’d be able to afford our own insurance. (Again, I laugh at this now.) There was just one problem.
We couldn’t agree on a name.
I was adament that she be named Eva, which is my grandmother’s name. I was very, very close to my grandmother. Chris agreed, but only if it was her middle name. (He thought it was too old fashioned!) So, for months and months, I scoured books and websites trying to find a name that worked before Eva. Do you have any idea how hard that was?! I could find nothing. Finally, on November 8, Chris relented on his insistence that Eva be her middle name only (because I threatened to make him pick out the name by himself!). After only a couple of hours, we had the name narrowed down to a few choices before finally settling on Eva Ryann. She was born two days later. The obgyn had been telling me for a month that she was coming any time now, but apparently she wasn’t going to make her appearance until we chose her name.
The delivery was a piece of cake. I was only in labor for about five hours. I only had the epideral because the nurses and my family finally talked me into it-the contractions really weren’t that painful. I only had to push for five minutes. It was ridiculous. And Eva was soooo beautiful. A head full of black hair and beautiful blue eyes. She was only 7 lbs. 1 oz., and she was perfect. The only problem was that she seemed to have some extra fluid in her lungs, but they said she’d just cough it out in a little while and she’d be fine. She was swaddled and began meeting her family. Chris tried to give her a bottle after a while, but for some reason, she wouldn’t take it. We just assumed she didn’t want it.
We didn’t know that she was slowly dying.
How could we know? She was perfect! All ten fingers, all ten toes, a healthy weight, perfect ultrasounds, no complications during delivery…how could anything be wrong?
About an hour later, we were moved from the Labor and Delivery floor up to the recovery floor, where we’d planned to stay for two days before taking our perfect baby home. At about 10:30 p.m., the nurse, Michele, came in to take Eva’s vitals. She checked her pulse, took her temperature, listened to her heart…then she said she’d be back in just a few minutes. She came back with the charge nurse, who then looked Eva over. I wasn’t sure why. Maybe it was because of her sheer perfection? Then Michele told me that she had heard a murmur in Eva’s heart, which is why she brought the charge nurse in. They also agreed that Eva was looking a little “blue,” so they wanted to take her to the floor nursery just to check her out for a while, but they’d have her back in our room by midnight. I still wasn’t concerned. I mean, she was going to be just fine. She had to be. “Stuff” just didn’t happen to us.
I fell asleep soon after they left. I had just had a baby, after all. I woke up at about 12:30 a.m. and wondered where Eva was. I didn’t call Michele right away because I just figured they had lost track of time. I decided to call at 1:00. Thirty minutes later, I was picking up the phone to call Michele when she came in the room. She told me that they had decided to move Eva to the NICU. She tried to tell me about oxygen saturation, but I had no idea what language she was speaking. All I heard was that Eva’s were in the 30′s, when they should be at 99-100, and that she was on oxygen. Chris and I were taken to the nursery to tell her good-bye for a while. We couldn’t go with her-not yet. Once she was stabilized, we could go see her. They said someone would call us once we could go see her.
An hour later, nothing. Two hours, three hours…the entire night passed with no word. I finally called NICU to find out what was going on. I was told that they were running tests to see if she had somehow contracted pneumonia, which would be causing the low sats. I let out a breath. Pneumonia? They have medicine for that.
A short while later, they called back. She didn’t have pneumonia. Then the doctor said the two words that would change my life forever: heart defect.
Defect? As in defective? As in not perfect?
I’m sorry, what?
“We’re waiting on a pediatric cardiologist to arrive to perform an echocardiogram to check for a heart defect since her lungs have been ruled out.”
I will never forget that moment as long as I live. Chris was standing next to me as I was talking on the phone. I had been jotting down sentences for him so he’d know what the doctor was saying. At that point, I dropped my pen, and my legs gave out. I was able to catch myself. He braced me with his hand and looked at me questioningly. I look at him with tears brimming and wrote those two life-altering words.
Heart defect.
The pediatrician said they’d call once the cardiologist had arrived. I hung up the phone, and together, my husband and I fell apart. I don’t think either one of us has ever cried so hard in our lives. After a while, I began making phone calls because I knew that our families and friends were anxiously awaiting news. I remember barely being able to get through the conversations and having to stop quite a few times just to sob. I was raw, completely and utterly raw. I called the NICU back a couple of hours later to check on her progress. By this time, we hadn’t seen her in nearly twelve hours, and I was starting to get really upset. They said that the cardiologist was just finishing the echo and to head on over.
I’ll never forget the walk, or wheelchair ride in my case. There was a long breezeway connecting the maternity ward and the NICU. It was isolated and spoke of the isolation that was to come. We had to be buzzed in by security, and once through the double doors, there was an empty hallway with two large sinks where you had to thoroughly scrub before you could be admitted to the NICU. After scouring our skin, we went in.
And there she was, in the very first room. This was not the baby I had delivered the night before. It couldn’t be. She was hooked up to all kinds of machines. She couldn’t be swaddled because of it. She just lay there on her back, naked and helpless. She never opened her eyes. She never woke up to cry or to feed. This couldn’t be our perfect baby.
The doctor finished the echo and then sat down with us. It appeared that Eva had Hypoplastic Right Heart Syndrome. Uh, come again? Then he drew us a diagram and explained that she was missing the right side of her heart and what the consequences of that were. We asked about the prognosis, and he told us that we’d know more once she got to Egleston. They just had to wait for a bed to open up, which could be a matter of days, or a matter of weeks. Until then, she was to remain in NICU.
Sure enough a bed opened up on the very day I was to be discharged. They called that morning to tell us that the ambulance was on it’s way to get her and that I had 30 minutes to get ready if I was going to go with her. We had just enough time for me to get dressed, sign the discharge papers, and walk over to NICU. They were loading her up with I got there.
I had no idea that the ambulance was taking me to Holland.
Almost two years and two heart surgeries later, and I’m almost fluent in Dutch.
And my perfect baby? Well, I still think she’s perfect. She’s perfectly imperfect. And she’s mine.
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