Ethan’s Story

16 years ago I had my first baby. A baby boy who who weighed 4 lbs. 9 oz., had terrible Apgar scores and took several minutes to find his breath. A baby who heard these first words from his mother, “Oh, you look a little like E.T.!”
He was whisked away leaving two young parents to stare at each other, wondering what had just happened.

Just as we had learned in our Bradley Method Birthing Classes, should the worst happen, I sent Dennis to follow the baby and leave me to the nurses. He came back nodding affirmations that the baby was fine and telling me that they would bring him to me soon. There were 48 hours in which we did not suspect that something was different about our precious newborn son. We followed the normal routine of a baby who is struggling to adjust to the outside world, visited the nursery, tried (many times in vain) to feed him, and allowed them to draw yet more blood. On the third day came the fateful words, “we suspect your baby has Down syndrome.” Although Dennis knew this truth from the moment he saw Ethan’s little head emerge, he assured me that ‘they’ were wrong and that everything would turn out fine. ‘They’ were right, and everything would turn out fine.

I participated in a club in Junior High called “The Special Olympics Club” where I helped to organize and attended a dance for the special education students. My buddy for the dance was J.J., a sweet-faced, slightly rotund boy with Down syndrome that smelled like Ivory soap. He was quirky, joyful and very easy to be around. I would later see him in the hallways at school, and if no one was looking, would give him a pat on the shoulder and a quick hello.

One day, I came home from school and caught the Afterschool Movie. The movie was entitled “Jonathon: the boy nobody wanted”. The movie moved me to tears followed by the naive, but heartfelt prayer, “Please God, if you ever need someone to take care of a baby boy with Down syndrome, pick me, I will love him.”

During high school, I had Sunday School teachers who had a beautiful, baby boy with Down syndrome. He was a chubby, towheaded boy who made the rounds on everyone’s lap in class before we were done. I watched him grow into an adorable toddler and a grade-schooler who still found pleasure in Barney and Raffi and his beloved sisters.

When we were 20, and Dennis and I had already decided that getting married would be alot of fun, I felt like I needed to inform him of my penchant towards these kids. “Dennis”, I said, “when we are older, like 40, and are settled and have some money, I would like to adopt a baby with Down syndrome. I need you to know this.” Dennis said that was just fine.

Weaving it’s way through my life, was a thread that would ultimately draw us to the birth of our baby. If only I could have held tightly to that thread and use it steady myself during those first tenuous months and years. Instead, I felt myself dangling from that thread in a precarious adjustment to being the mother of a baby with special needs.

I wish I could tell you that I recognized that many of my life experiences had, in fact, been leading up to this moment, and that I could embrace all the specialness of being charged with a child who was going to need more of me than I even knew existed at the age of 22. I wish I had the maturity to give credence to the little voice that kept extolling the virtues of a child who was deemed less-than-perfect to the world – although perfect to God and us.

We had no stability, no money, very little in the way of communication skills, a sick child, we were young – we had an awful lot going against us. But sometimes, love really is all you need.

I struggled to find him great doctors, people who would listen, therapists who had lots of experience with babies with DS, the right formula, vitamins, medicines, toys, and anything else that would be a part of his life. Nothing went unquestioned, nothing was taken for granted. He changed the very core of who I was. My intense love for him was coupled with the intense fear that I would make decisions for him that were less than optimal. The overwhelming feeling of being given something really important to do was always tempered by my conern about whether I could live up to the challenge.

Dennis and I were gifted by God, with total acceptance for who Ethan was. We never wished he was not a baby with Down syndrome. We did pray that he would not be so sick, that we could provide all that he needed and that he would develop to the best of his abilities, but we never wished he was anyone else other than him. We never wondered what Ethan would be like without DS, to us, there was no Ethan without DS, it was every ounce of his being, literally in every chromosome.

Ethan was the glue that held us together, the common fight, always loved, even at his hardest. There were many hard weeks, months and years. Many difficult situations, not one I would trade for something less intense. The cliche of the “lows being lower, but the highs being higher” fits how we feel about what we have been through. You cannot know the gifts found on this road unless you have walked it.

If I could journey back 16 years and give myself some some advice, I might just walk right by and not say a word. Because every mistake, pitfall, trial, and hard time forged the structure of who we are. I wouldn’t want to tip me off to all the unexpected joys either! It all pointed us toward God, the people we needed to meet, the places we needed to be, and the 3 other boys we have been blessed to have and fit it all together like a jigsaw puzzle.

Happy Birthday, Ethan, we are so proud to be your parents, thankful we have to oppotunity to spend our life with you, and grateful that you were the gift we received 16 years ago today.

P.S. Ethan was born the day the New Jersey Devils won their first Stanley Cup – just as his father had predicted 8 months earlier.

Comments

  1. Christan says:

    “…we never wished he was anyone else other than him.”

    This is beautiful, Janet. You’ve moved me to tears. Thanks so much for writing this.

  2. Rie says:

    You moved me to tears too. Beautifully written Janet. When I first heard that your baby had Down Syndrome, I immediately thought of all parents to take on the task, it would be you. I can relate to a lot of what you said here… all the challenges make us rely on God more and more.

  3. Fiona says:

    Crying, sobbing, smiling, remembering…”Its ok though, right?”.

  4. This shows the power of genuine love. I too had a premature baby, and it is the scariest experience. We never tested through all 3 pregnancies for any issues, because we knew we would overcome anything with our love for each other and our babies. Happy to see others living the same way. Best wishes.

  5. Jordan Green says:

    Very good. Say a very happy birthday for me to Ethan. Hope to see him soon!