A Trip 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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several 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 guidebooks. 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. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. The loss of that dream is a 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 had no idea that morning when the sun was gleaming into my delivery room so perfectly, that I was about to land in Holland.
They put Case on my chest and let me hold him skin to skin. I remember looking at his poor head. It was huge from his rough birth. (He came out OP. Meaning that he was sideways. Normally their shoulders are flat and they are face down, but he came out with his shoulders up and down and he was looking sideways right at Col. My doctor said this can be like adding a pound to your baby. Youchy!)
After looking over his head I noticed his face. It seemed so swollen, and I knew this was normal, but something just didn't seem right. I just remember thinking "He doesn't look like what I thought he would look like."
I kept holding onto his little fingers and my tears of pain from labor had turned to tears of joy.
My baby was here.
I kept thinking over and over how different he looked than I had anticipated. After about a minute of holding him, worrying about his head, and reassuring myself he was just really swollen, it clicked. He has Down Syndrome. I didn't say it out loud but I kept thinking it. Then I'd think no he's just swollen. But my mind kept coming back to those words. Down Syndrome.
I was starting to worry, but there were so many people in the room that I didn't want to say anything yet.
The NICU nurse told me to tell her when I was ready for her to take him to be weighed and checked out. After about 15 minutes of holding him I told her that she could take him. I couldn't even concentrate on what was going on at this point. It's all I could think. Down Syndrome. And honestly, it's all I could see. Down Syndrome.
Collin followed the nurse over to the table where they were checking him out. I was getting all taken care of by my doctor and he kept telling me how that was a tough labor and how I did good because that's not easy having them OP and on and on.. I can't remember what else he said. I was too focused on one thing. Down Syndrome.
Collin was taking pictures of Case being measured and weighed and kept looking over at me. I was giving him a look. I was hoping he would give me some sort of sign that he saw it too and reassure me that I wasn't just being dramatic. I didn't want to ask and sound rude and have all the nurses laugh and wonder why I would even ask such a thing if he really wasn't. I was hoping Collin would give me a look and I would know that he shared the same worry. (After talking to Collin after the whole thing he says he noticed I was giving him a look but thought I was maybe a little delusional from labor! Haha!)
He was completely oblivious.
I waited until it was just the NICU nurse, Collin, Case and I. I stirred some more inside about whether or not to ask for a few moments, then I finally did.
"Does he look Down Syndrome?" I said.
"He does have some features. Low muscle tone, flat face....." I think she said more things but I couldn't even think straight enough to really listen to what she was saying.
Collin and I looked at each other and listened as the nurse told us there was nothing for sure yet and they would have to do some testing to be positive. Collin kept saying "I don't think he is. They will do the testing, but it will be okay!"
I knew that he was though. Something inside me just knew it! Call it motherly instinct or whatever you may. After him reassuring me that everything was going to be okay a few times I finally just said he is. I think he is honey.
We were left alone in the delivery room.
The next half hour is time I don't think I could ever erase from my memory even if I tried. We hugged, all three of us, and cried. I have never felt so close to heaven as I did then.
I remember telling Collin that I was so sad that he wasn't going to look like us. (Totally not true. He looks a lot like Collin now!) We talked about all the things we had imagined he was going to grow up and do. Play sports, drive the tractors, give us grandchildren etc.. and after a good half hour of processing and throwing this "idea" of who we thought Case would be right out the window we realized just how blessed we were, and that everything truly was going to be okay.
My doctor came back in and talked to us about how lucky we were. He gave me a hug and talked for us at a great length about how great of parents we were going to be to this special guy. He reassured me that my fears that me being extremely sick during my pregnancy and taking nausea meds caused this were not true.
He told us about his palms and how he had noticed he had a simian crease (common in Down Syndrome) on one hand but not the other. If you don't know what this is google it! Case has one on his Left hand! He said that he went back and forth in his head as to whether or not he thought he was. He then offered to tell my mom, who was out in the waiting room. We took him up on that offer and figured it would be better for our family to know before they came in.
I have to pause here and say that I had the BEST doctor. Seriously I know that it was meant to be that I chose him and that Case came early so he could deliver me. He handled the whole situation so well and I don't know what I'd have done if he wasn't the one talking me through everything. I get emotional when I think about him because I truly believe everything he said to us was straight from our Heavenly Father. He was an angel to us during this time!
From here on our family came and we all cried tears of Joy! We felt so touched, and loved by our Heavenly Father for trusting us to have this perfect spirit in our lives.
Many people have told us that these precious babies only come to special families, but I beg to differ. I mean thanks for the compliment and it means a lot that people think that, but I truly think that he came here to make us better. I mean what better way to encourage us to be our best selves? He came here to strengthen our testimony and to remind us what life is really about!
I have occasional moments still when I think of what the future holds and cry for him. I don't want to have to check him for leukemia each year because his chances of getting it are a lot higher. I don't want him to be left out. I don't want to have to watch him struggle through health problems other kids aren't facing. I don't want him to struggle for things that will come so much easier to other kids. In fact once I cried to Collin because I said he might not get to go to school dances. Collin was pretty quick to put my emotions in check when he told me that Case will be happy regardless. I want to protect him from all the stares he will get, and the finger pointing. Things like that are going to be harder on us than they will on him.
Right now he is still a baby and not much is different about him compared to other babies. I realize that is going to change. Things will get harder, he won't hit his milestones as fast as other babies, and things such as walking and speaking will be a lot harder for him. I am well aware of that, but I am choosing to enjoy these baby moments and not worry myself sick over what is to come. We will take each day at a time.
Now to answer the questions we always get.
No, we had no idea he had Down Syndrome we weren't just hiding it from people.
No, we didn't get the genetic screening done when I was pregnant that would have told us he had it. We figured why would we? We were going to love and keep the baby no matter what.
No, my doctor didn't miss something. I had many ultrasounds and all his body parts including intestines were in tact and his heart looked good. He was growing at a normal rate. These are things that usually cause questions if there are problems. So nothing seemed alarming. He wouldn't show his face during his 3D ultrasound- I was so mad about this then, but it makes sense now. He knew this mama would have worried if I saw him and noticed he had Down Syndrome. I would have been doing all sorts of googling and worrying. The only thing that was worrisome during my pregnancy was my weight loss and my placenta was older than it should be. It was aging and calcifying early. Neither of which are signs of Down Syndrome.
He's been really healthy compared to many. He has an ASD (a hole) in his heart that could need surgery that we are meeting with a cardiologist from Primary Children's to address in January. We have to follow up with a audiologist because he failed his hearing test twice. (Their ear canals are a lot shorter so the test often isn't accurate. He startles when he hears loud noises so I'm not too worried about this!). He is still on oxygen, but he is on the lowest it can be! So we are hoping he will be off it soon.
Did me being extremely sick during my pregnancy cause this? Nope! Down Syndrome is determined when conception happens. It is an extra chromosome and it has nothing to do with the many nausea meds I was on, or how much weight I lost during the first two trimesters. I bet you didn't know that Down Syndrome CAN be genetic between the two parent's genes. We are waiting for our genetic testing to come back to find out if that's our case and if we have high chances of having another one. Even if they say we have a 90% chance of having another baby with Down Syndrome, we already have decided we would have another baby in a heart beat. God's plan will lay out the way it is intended regardless of "odds".
Do we wish we would have known? Absolutely not! We would have just worried about things we didn't need to worry about. And no, we won't get the genetic testing done next time either.
I hope that answers some of your questions. I know many of our close friends have been asked these things because people don't want to offend us. Please don't feel like you have to beat around the bush. You won't offend us. What does offend us however, is when you tell us you are sorry. Please PLEASE don't be sorry for us. We feel so lucky! There is absolutely nothing to be sorry for, if anything you should be jealous. :) I mean seriously, how lucky am I that I'll always have a grocery shopping buddy for the rest of my life, and Christmas will always be magical in our house!
Remember at the beginning of this story when I said all I could see when I looked at Case was Down Syndrome? It makes me so sad that that's all I could see! Now I don't even think he looks Down Syndrome. I honestly don't think he does! He looks like my Case boy! I literally just see a perfect little boy. That's exactly what he is. PERFECT.
If you'd like to follow along on his story I've set up an Instagram account for him.
I can't wait to share the joy this little boy has brought to our lives with everyone else.
We love Holland more than we could have ever imagined. Given the choice again, we would choose Holland over Italy all over again.