Loved into Existence

The date of this article, 3/21, is a very important day for my family and for our community, it is World Down Syndrome Day.

My youngest brother Sean was born with Down Syndrome. As a matter of fact there are 3 sisters in our community who have siblings with Down Syndrome! This day has been celebrated as a global awareness day which has been officially observed by the United Nations since 2012 to help people understand and support those with Down syndrome better.

Down Syndrome occurs at the moment of conception when the 21st pair of chromosomes has one - or half of one – extra chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down Syndrome. Typically, the nucleus of each cell in humans contains 23 pairs of chromosomes, one set from the mom and one set from the dad, to give us 23 pairs, or 46 chromosomes each. The extra genetic material makes these people extra special!

After they told my Mom that Sean may have Down Syndrome – they were not sure at first – Mom was afraid to tell my father about the diagnosis, but after she did, he looked at her and said, “He’s got 10 fingers and 10 toes. He’s perfect!” With my father’s support and acceptance, Mom knew she could get through anything.

With Down Syndrome, there’s no way of knowing how far their intellect, motor skills and other abilities will develop. The beautiful part of having a family member like Sean is that every time there’s even a little advancement in learning, it is a reason to celebrate. Like the day he said his first word, or fed himself, or took the first step on his own, spoke his first sentence, and so on. With each mile-marker, our family celebrated with hands clapping and shouts of joy and encouragement.

People have always been very taken with Sean. For the first 7 or 8 years of Sean’s life, he was the poster child for United Way and has met many celebrities, including Yogi Berra, Joe Pesci, several Miss Americas and other celebrities.

He is also the motivation for the professions of two of my siblings, who are both teachers for special education students - and the reason I am pro-life today. While I was at a church event one day, a friend was sharing that Sean came to the Youth Group she was in charge of, sharing how much fun it was to have him there. I told her that my brother has always been the heart and soul of our family and he taught us what real love is all about, that he sort of “glued” our family together at a critical moment in our family’s life right after he was born.

She said to me, “Wow! People really need to hear that, would you be willing to tell that to other people?” I, of course, said that I’d be honored to. So she replied, “Great! We are hosting a Pro-Life Prayer Vigil in 2 weeks...”

I have no recall what she said after that because of all the bells and whistles going off in my head. You see, at the time I was not Pro-Life. But being a person of my word, I was not about to retract my, “Yes!”

So in those two weeks prior to the event, I tried to get all the information I could about abortion, etc. and as Providence would have it I had an opportunity to go to the National March for Life in Washington, DC. So, I went.

The morning of the Prayer Vigil came and there was Mass with a Rosary procession to where it was taking place – across the street from an abortion center! After prayers and several presentations, including a priest and a Protestant pastor, it was my turn.

I didn’t really know what I was going to say, because my heart still wasn’t there, so I began with, “I’m just here to tell you about someone who is very special to me…” It was in that moment that, like St. Paul, the scales fell from my eyes and I realized that the reason people argue to keep abortion legal is that they might be like my brother!!!!! I became completely incensed! To me, that’s like giving the love of God Himself away!

I don’t remember what I said after that point, but many people said it was very good. Afterward, I got into very active pro-life work and it is the reason that after I heard a call from the Lord to a spousal relationship with Him in the religious life, it had to be with a community dedicated to pro-life works of mercy.

It seems that everyone who meets Sean falls instantly in love with him, even if at first they are visibly uncomfortable. To illustrate what I mean, one year I was planning a trip with Sean to the National March for Life in Washington, DC that our parish was running. However, we arrived late for the bus and could not sit together. Sean had to sit next to middle-aged lady that pretended she was asleep and turned her head the other way. He was very respectful and gentle with her, but by the time we were getting close to arriving, they were laughing together and she was sharing her lunch with him!

Sean is a huge Elvis fan and has competed in many Elvis impersonator contests at a yearly event that takes place in Asbury Beach, NJ. After a few years that Sean began participating, he took Second Place! Not because he’s a great singer, because he’s not! He won because he puts his whole heart into it and the judges really love seeing him compete each year.

Sr. Veronica says about her sister Samantha that she’s a joy to have around, is very dramatic and has a wild personality. When she turned 16, she wanted to learn how to drive like all of her siblings. So that she wasn’t “crushed,” her mom told her that maybe when she’s 30 she can learn how to drive. Samantha responded by going to the store and buying a Hot Wheels, telling everyone, really singing it, “I bought a car!

Sr. Therese says that her sister Celeste is a piece of heaven on earth. Her best quality is that she loves people just for who they are, she doesn’t see people’s defects and doesn’t judge them the way others might be tempted to. She is also not afraid to express who she is and is not concerned what you think about her, whether you like her or not.

Down Syndrome is not an illness, disease or defect. It’s not something you take medicine for or look to cure. It is just part of who each of these people are. In the book of Jeremiah, the fifth verse of the first chapter says, “Before I formed you in the womb I knew you, before you were born I dedicated you, a prophet to the nations I appointed you.”

Before you were born – before! God knew everything about each of you, your gender, skin color, hair color, eye color; He knew what talents you would have, your likes and dislikes, He even knew your fingerprints. God knew you before you were conceived. And He loved you into existence, forming your very being, “Knitting you together in your mother’s womb.” (Psalm 139:19) It’s the same with Sean, Samantha, Celeste and others like them, God saw everything about them, that they would have Down Syndrome and formed each of them in their mother’s womb - loving each of them into existence.