Author: Mary Sweeney, Marketing and Development Director, Down Syndrome Association for Families of Nebraska

On March 17, 2014, our beautiful son Henry Lucas Sweeney was born. It was the evening of St. Patrick’s Day, we had green shamrock lights hung in the labor and delivery room and Dancing with the Stars was playing on the TV in the background. Family was waiting just down the hall for the exciting news of whether we had a baby boy or baby girl.

Unexpectantly, though, things took a sudden turn as our doctor gave us the shocking news that she thought our perfect little boy may have Down syndrome. In that moment, motherhood got very real. After several days of waiting and enduring the emotional roller coaster of not knowing, the diagnosis was confirmed. When I asked our pediatrician at the time how this happens, she explained that, “This is just one of nature’s mistakes.”

I’m sorry…what?!

In that moment a fire was lit up inside me and I learned something new about motherhood – it can be equal parts heartbreaking and filled with passion all at the same time. I looked at this woman who didn’t know my baby. Didn’t know me. Didn’t know my husband. And fired back, slowly and carefully so she didn’t miss the gravity of what I was saying.

“Don’t…ever…call my baby a mistake.”

She immediately rescinded her words. Explained that’s not what she meant. Tried to move the conversation forward. But the damage was done. A little part of my heart broke in that moment thinking of the careless words, looks, and thoughts, that people would have for him throughout his life. 

I wish I could say that after that appointment, I immediately took action to teach, educate, and showcase the beauty of Down syndrome. But like many parents who receive a diagnosis of Down syndrome, or any type of special need, there is a grieving process. It takes a while to accept the new path you have in front of you. It seems as though you think life ends in that moment, but little by little, you realize it doesn’t.

The first time he smiled, my heart grew a thousand times bigger. The first time he said, “Mama,” I burst into tears at work as I watched it on my phone. Just last night I was watching a video from two years ago of the first time he said, “I love you,” and it still made me well up.

Being a mother isn’t a one and done sort of thing. We dream about it, think about what our kids will look like. What we will name them. Where they will excel in life. But we don’t realize yet as young women in that dreaming stage that there is sooo much of a journey to be had between each perfectly smiling picture that is posted on Facebook.

It took time to accept Henry’s diagnosis, but little by little we did. So much so that this January I quit my job of over 10 years so I could work for the Down Syndrome Association for Families of Nebraska. The passion that filled me back in that doctor’s office has been channeled toward making the world a better place for our sweet boy.

Since the birth of Henry, we have had two more incredible little boys join our family. Henry is now 5, Jack is 3, and Charlie is 1. And gosh are they the best of buds.

Now my fears and worries focus on the future and life after we are gone. (Because as a mother, we can’t NOT worry, right?!) Will Henry have friends in kindergarten? Will his teammates on his new soccer team pass him the ball?  Will he even want to play soccer?! And the list goes on. I am working right now to set up an Enable Savings Plan Account so I can guarantee he is financially taken care of even when I am no longer around to ensure that. And after I am gone, you can be sure I will be spending my days looking down on Henry, Jack, and Charlie, and pestering every saint and angel in heaven to be on their guard watching out for my boys.

Motherhood is one of the most incredible gifts and responsibilities ever bestowed on me. Like an old coworker used to say, it’s the hardest thing you’ll ever do in your life that you’ll absolutely love. And he was right.

So, whether you are a mother, grandmother, aunt, godmother, or just an outstanding female role model in a young person’s life, I wish you the happiest of Mother’s Days. Give yourself a pat on the back for the outstanding job you are doing. Motherhood isn’t an easy journey, as I’m sure you all can attest to. But gosh with each smile, hug, tear to dry, and sweet giggle at 6:00am, I’m reminded that it is sure a beautiful journey.

Mary Sweeney
Marketing and Development Director