The Lessons Our Baby With Down Syndrome Has Already Taught Us

Twelve days ago, TJ and I were sent to the hospital and were told, “Today is the day. It is delivery day.” We didn’t know what to expect, since we were only 34 weeks pregnant. We experienced only a few minor complications, but, most importantly, we were going to become parents in 30 some hours!

Doctors and nurses were in and out of our delivery room, explaining our beloved child would have to be cared for in the NICU for a small amount of time due to his estimated size and age. We were prepped for tube feedings, IVs, oxygen requirements — you name it. They had it covered and gave us a realistic view of what we were to expect so nothing would be a surprise.

On April 5, 2016, I gave birth to our first child, Liam Joseph. As I was lying on the operating table waiting for his arrival, I couldn’t control the amount of emotion that had hit me, and I sobbed as I was so excited to meet my son for the first time. 

A few short minutes later, I heard screaming coming from the other end of the room. It was him. He was here. He came out was kicking and crying and was ready to face the world.

They cleaned him up as his dad watched, and he soon brought him over to me. He was 3 pounds, 7 ounces and 16 and a half inches long. Three whole pounds of absolute perfection. He was the most beautiful baby boy I had ever seen, and I was instantly in love with him. This is what everyone tells you — a love only a parent will ever know. Sounds so cliché, right? That is the only way that I can explain it. Words cannot explain what goes through your head when you finally get to meet your very own child for the first time.

Liam was then taken to the NICU. He was connected to IVs, had a tube feed running and was on oxygen, which was exactly what we were told to expect. After talking with the doctors, we were expected to be a part of the NICU family for the next two weeks or so. 

As the days went by, Liam began to feed on his own and started to breastfeed on his very first try. He began to rapidly gain weight, maintain his own body temperature and made daily strides that surprised the doctors, nurses and us every single day. He was accomplishing tasks and giving us the sense that he is tough, strong-willed and has his very own agenda and everyone else was going to have to follow it. This is Liam’s story and that is that! In fact, the meaning of the Irish name “Liam” means “strong-willed warrior,” so why expect anything less right?

A few short days after Liam was born, one of his doctors decided to order a genetic screening due to his small size at birth. All other tests and labs were absolutely perfect, so this was done just as protocol and precaution to be safe. We were in Liam’s room one Thursday night getting ready to go home to rest up for what Liam was to bring to us the next day when the doctor walked in and changed all of our lives.

Trisomy 21. “Liam has Down syndrome,” she said. I was in shock. TJ was in shock. Liam was in his bed, sound asleep and content as can be, while we sat there crying, shaking, yelling and holding each other. Our lives as we knew it had forever changed.

I have never felt such emotion after hearing only one little sentence — ever. I cried off and on for hours and just sat there looking at my son not knowing how to feel. A sense of guilt came over me as if this were my fault and I had done something wrong to hurt my child. What did I do wrong and why did I suddenly feel like the world was collapsing on my brand new family?

I sat there staring at him fast asleep, thinking he will not live the life I have planned for him. When you dream of a family and children, you dream of what you want for your child. I want him to enjoy the same things TJ and I do. We want him to play sports and excel in school. We want to teach him so much. We want him to go to a great college, get married, have his own kids and everything in between.

As I sat there staring at him, I felt a sudden sense of loss over the plan I had created for him. I was grieving for what we wouldn’t be able to plan for him. Liam now had his own plan.

How dare I feel that way! I felt so guilty that these thoughts even crossing my mind. I was upset at the world, wondering why this was happening when the screenings were normal throughout our entire pregnancy. There were no obvious red flags when he was born. How could this be happening to our family? Our child is going to live a life that will be a constant mixture of good days and bad days, and now I felt as though the world would forever look at him as different. All of these thoughts constantly were racing through my head, triggering the ever so constant tears any time I was alone. I still cry. I am still scared for our family’s future, but now I cry for different reasons.

Soon after, these thoughts subsided enough for me to wrap my brain around what was happening. Our world was changing, but it was changing in a way I couldn’t have ever dreamed of. Little did we know what we were truly in for!

Liam has a way …

A way of making himself known. A way of running away with the hearts of everyone who has met him or has seen a picture of him. He has done it since the second he was born.

He has a way of looking at you and capturing what you’re feeling with the expressions on his face. From day one, Liam has had a strong personality and a strong message that, to me, seems to say, “This is me and you will fall in love with me the second you lay eyes on me. I have my own way of doing things and I will forever continue to do so.”

Liam has a way …

A way of teaching all of us what truly matters in life. In all honesty, it is the little things. It’s the day-to-day accomplishments we have made as a new family. It’s the smiles I get when I sing to him and the cooing noises I get as we listen to lullabies. It’s the snuggle time I get to have with my son every single day. It’s watching TJ hold his son and talk to him and tell him how beautiful, handsome and perfect he is. It’s the moment in the car when everything is quiet and TJ looks at me and says, “Our son is the most perfect thing I have ever seen.” It’s the love I feel from TJ, which has never been more powerful and strong. And all of this is due to Liam. All of these beautiful moments and thoughts and feelings are because of Liam.

I believe God has a mysterious way of teaching us things and showing us things we didn’t know we were capable of. I look at this now as the reason we have this perfect little boy in our lives. There is something we are meant to take away from all of this. 

One of my first thoughts was I cannot handle this. I am not strong enough to be his mother. I am not good enough to be doing this, and he is going to need so much from me. How am I going to give this child what he is going to need? The night we found out our perfect son was even more perfect, I looked at him and said there was a reason we were meant to be your parents. We just didn’t know that reason yet. Then Liam looked up at the both of us and just smiled. At that moment, with the tears rolling down my face, I knew that everything was going to be OK.

Liam has this habit of looking over my shoulder and smiling. I believe we all have a guardian angel who is watching over us, and I believe Liam can see him. Whenever I have tested moments and tears, my beautiful son will look over my shoulder and smile. There is no greater gift than knowing at these moments we as a family aren’t alone and aren’t on a journey that we cannot handle.

Through the short few days Liam has been on this earth, he has already taught his father and I some of the biggest lessons we will ever learn. Imagine what the rest of our lives are going to look like when he has already made this great of an impact on our lives! How guilty do I feel thinking about how his life was going to be so different with less opportunities? How guilty do I feel for crying over the fact the Liam’s life plan according to us has changed? You bet it’s changed, but it couldn’t get any better than this.

Liam will have so many opportunities that we as parents just weren’t aware of until now. Liam has so much love and support from those around him that his life is going to be filled with greater opportunities than most other kids. He’s going to have the most fulfilling life. And who doesn’t have good days and bad days? We all do so why would that be any different with him. But he will turn our so-called bad days into an amazing experience filled with joy and joy with so many lessons learned.

Everyone is right, there is a reason Liam was given to us and he is the greatest gift I could have ever been given. He will continue to show us what the true meaning of life is. He will continue to bring more joy and happiness to our family than we ever thought was possible. This little man is the light of my life and the love of my life, and now that I have had the time to be able to process the emotions and the doubt, anger and disbelief, I cannot imagine my life any other way.

We are the proud parents of a perfect child who happens to have Down syndrome. This is the best gift we could have been given, and I would not want our journey with Liam any other way!