There are many moms who will learn about a Down Syndrome diagnosis at birth, that is how our family learned about it too. Some of us will go on to advocate fiercely in hopes of easing the transition for those moms who come after us, when they feel shell-shocked, when they are scared. Andrea is just one of those amazing mamas hoping to help others, encourage moms and show the world that Down Syndrome is not as scary as we fear. She has created the most beautiful and touching video in the hopes that new families will see it and find immense encouragement. Her son Case, the impetus for her trailblazing is the light of her world. Here’s Andrea’s story and her brilliant video, please share it so that we can circulate the positive side of Down Syndrome.
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 my husband Collin. 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.
Never before have I seen with blind eyes, and loved with such a pure heart, until now.
When I started In Case You’re Down I wanted it to be a resource for new parents who have a new diagnosis. Receiving the diagnosis turns your world upside down, but it doesn’t have to be in a bad way. It can be in a really beautiful way, if you let it and take the time to understand it.
With that being said, it is hard to understand something you know so little about, cue the video.
I thought it would be fun for these new parents to see in action some babies and kids with Down Syndrome. I tried to select a variety of ages for the video with hopes that it would be easier for someone new in these shoes to picture their future. It’s hard to imagine what your little one will look like or act like and I wanted this to show that they really aren’t that different.
Like I said in the video, it’s one thing to talk to doctors and friends about your situation, but unless someone has truly been there, they simply cannot understand.
There will be many people searching, just this month, for something like this to ease their worries and fears, and I can only hope it will reach them.