We welcomed our awesome baby, Ethan, on December 11, 2016. We should have known he was going to be our very special love in the way he decided to make his appearance.

I had a c-section scheduled for December 14 and was so excited for the catchy birthdate my son was going to have: 12/14/16.

Little did we know that Ethan had other plans about what he was going to bring us. Despite coming a few days early, Ethan was a big healthy boy at 8lbs. 14oz. I can remember hearing the doctor comment on his amazingly huge cheeks when she delivered him in the operating room.

We spent 3 days in the hospital and home we went. A few days after coming home, we went to our routine doctor’s appointment and all was well. Ethan was gaining weight and doing great. We went home and spent the next week and half enjoying our mild mannered, sweet boy. We returned to the pediatrician on Friday December 23rd for Ethan’s two week appointment. The pediatrician looked him over and asked us the typical questions about how he was doing, and then he began asking questions about my husband and my background, and was looking carefully at our eyes. He asked us whether or not Ethan looked like his big brother when he was a baby and we laughed about the similarities.

All was well.

The pediatrician left and, as we got Ethan ready to leave, he popped his head back into the room and asked us to hang on for a minute he wanted to talk to us about something. Panic set in. What in the world did he need to talk to us about? My mom-anxiety kicked into overdrive.

He came back in the room and sat down with a worried look on his face. He said he was concerned about Ethan’s eyes and the distinct look he had. He said they are characteristic of a child with Down Syndrome. At that point, I heard nothing else that he said. It was like he was speaking another language.

All I remember was breaking down into sobs as my husband listened to what he was saying.

The pediatrician repeated over and over again that he did not think that Ethan had Down Syndrome but he just wanted to confirm by doing a DNA blood draw. So there we were, two days before Christmas and my newborn was having blood drawn to confirm or deny whether he had a genetic disorder that I thought wasn’t possible because of my perfectly healthy pregnancy.

It was the longest 2 1/2 weeks of my life. There were so many tears and so much research. By the time we got the call confirming that Ethan did, in fact, have Down Syndrome we had convinced ourselves that it wasn’t possible and when that phone call ended, we started the grieving process all over again.

I cried for days and, truthfully, still have a hard time telling people of Ethan’s diagnosis. I was terrified and I felt robbed of the baby I had pictured completing our family for so many months.

My husband was devastated as well and I have never seen him so sad in the 10 plus years I’ve known him.  This extreme sadness lasted for about a day. We had 3 year that we needed to get ourselves together for and a newborn that was very much alive and thriving that didn’t deserve to see us so sad.

Thank goodness for those things.

So began the list of doctors we needed to see and boxes to check to get on top of what Ethan needed. We decided that we were going to rock this and give Ethan any and everything that he needed to be amazing and defy all of the things we’d read about having a child with Down Syndrome (and we read EVERYTHING).

We are so fortunate for Ethan’s health and strength, everyone that sees him is so impressed by him and what he is doing.

Fast forward to almost three months from those early weeks and we are so in love with our Ethan. He is the sweetest, happiest, baby. Every time he smiles my heart melts and I feel amazing guilt about how I felt in the beginning.

I am finally at the point where I forget about his diagnosis, and just see him for the awesome kid he is. We feel like we are the luckiest people in the world that we were chosen to be Ethan’s parents and we’re now part of this amazing group of people who share in the love for these children who have a little more to give the world.

UPDATE ON ETHAN

Hi again! It’s Shannon, Ethan’s mom and I’m here to give you a bit of an update on our previous post from with Ethan was only about three months old. I’m here to say that we couldn’t have asked for the blessing of this sweet, sweet boy. He is truly, truly the light of our little family and we all fight over who can make his smile the biggest. Since our first post, Ethan has successfully learned to sit up, crawl, cruise, climb (on everything) and take a few independent steps. He also has 10 teeth, can sign several words. While each of these things happened at his own pace, as I’ve learned over the past 19 months everything does with a child with Down syndrome, he is physically moving along very nicely. He receives physical therapy from the county every other week and we love our therapist visits. Ethan transitioned from solely being breastfed to table food at around 6 months. He LOVES anything pureed and still will suck down two or three baby food pouches if we allow it. Feeding was and continues to be a bit of a struggle with Ethan. He loves anything that doesn’t require chewing, eggs, oatmeal, ground beef, pasta (give him all the pasta) and it has been a struggle for me to add variety while also pushing him to chew harder foods and lastly, making sure he is eating and gaining weight (every doctor’s appointment I hold my breath when it’s time to weigh him. He’s an itty bitty thing). It’s HARD! There are many days where I have to step back and take a few deep breaths and remember that he isn’t trying to make me crazy. That has been one of the amazing benefits of having a child who just does things at a slower pace. Ethan forces me to slow down, to enjoy whatever stage he is in, and not worry about how long we’re in it. Ethan can self feed with his fingers and we are really working on using a spoon and next we’ll work on using a fork. 

Ethan also began SPIN therapy (play, communication, behavior all rolled into one) in the fall at about 10 months. I was slow to understand the benefits and was frustrated because I didn’t think he was moving along as well as I wanted him to. Ever since we realized Ethan’s gross motor was pretty good, my focus has been on hitting communication hard. Any child who cannot communicate with others gets frustrated and behavior becomes an issue. I want Ethan to be able to tell us, in some way, what he needs, wants, likes, or dislikes. I am an educator and I know the importance of communication in early childhood years. That being said, speech/communication is also the first place where I really saw Ethan’s developmental delay. At first it made me sad that he was seemingly so behind his peers with his speech, and then I used it as a driving force behind all of my interactions with Ethan. We imitate, sing, sign, move our bodies as much as we can in our house to give Ethan as much exposure as we can. He’s going to get it! I’ve learned that I cannot compare him to anyone else, even other children with his same diagnosis. It’s not fair to him to do that, not only are two typical children not the same, but throw in an extra chromosome and all bets are really off. 

I will say, as Ethan grows up, it becomes more obvious to other people that he has Down syndrome, but far less for us, the people who love on him every day. I am getting more of the strange looks when people ask me how old he is and my reply is 19 months because he isn’t walking or talking yet. But I let them look, because if they look long enough, Ethan will for sure flash is AMAZING smile. Our day to day looks just like every other family with two boys and that’s the honest truth. Down syndrome seeps into our life through extra doctors appointments and therapy sessions, but it doesn’t keep us from music class, swim lessons and eating sand at the park.

Have you ordered your copy of our book Down on the Farm yet?  Get yours now on Amazon.  This makes a perfect addition to any home library, a donation to your local library or better yet, a gift for a teacher for the upcoming school year!

Don’t forget to check out our store page too for all of your Down Syndrome Awareness Jewelry needs!