As I write this, Jacob has just turned fourteen. In so many ways, and much to our surprise, he is a typical teenage boy. He is moody sometimes. He is even sillier other times. And he is impulsive too. There are times when I want to ask him just what is he thinking and I stop myself. I don’t because first, he’s a teenage boy. And like all teenage boys the answer is that he probably was not thinking at all. I imagine his response would be the stock teenage boy answer, “I don’t know, Dad.”
Second, Jacob is nonverbal.
Jacob was born with Down syndrome. When he reached age five we suspected he was also on the Autism Spectrum. Our fears were later confirmed with a battery of tests administered by a neuropsychologist at Massachusetts General Hospital in Boston around Jacob’s seventh birthday. It was not exactly the birthday wish come true, as you can imagine. But his diagnosis did explain why he was continuing to miss many of his developmental milestones, including talking.
Yes, Jacob has missed almost every milestone, save puberty. Unfortunately nature has allowed us to experience this right on time, like some kind of twisted practical joke. Thanks, Nature! That being said, Jacob does have a communication device that he is learning to use. He loves music and singing, which is a joy and a blessing to this old music teacher’s heart. Surprising, he also has an acute ability to comprehend language. He may not necessarily seem like he is paying attention, but he is observing and absorbing everything. It was an amazing discovery his special school, The Children’s Center for Communication in Beverly, MA unlocked a few years back. It brought tears to both me and my wife Charlotte.
Fouteen years ago, we cried different tears when we first learned the news about Jacob. I remember that day so vividly. I was on such a high. Jacob is my first and only child. Charlotte and I had just come from what we thought was her first and only ultrasound. I was floating as I pulled the car into our driveway. Then I heard my phone ring. It was Charlotte. I had left her at her work just a half hour before. She was sobbing. She had received a message from the doctor. I caught between her crying something about markers, heart problems and genetic defects. He wanted us to come back.
My heart sank.
I can tell you truthfully, I was scared. And I was angry. Why us? Why this? How could this happen? I turned the car around and raced back to Charlotte’s workplace. We gathered ourselves and made our way to the doctor’s office. We met with a genetic counselor who gave us more information in forty minutes than I think either of us was ready to absorb. We knew our child would need major heart surgery, perhaps multiple heart surgeries, within the first year of life.
The topic then switched to Down syndrome. Markers are indications of development of the baby observed during the ultrasound. They pointed to the possibility of a genetic defect. The heart issue only added to that concern. Abortion was still a viable option at this point. Before making such a decision, we decided we needed to know for certain, for our own peace of mind. We agreed to do an amniocentesis. The doctors would draw a small amount of amniotic fluid from Charlotte and check for genetic markers.
We spent that first weekend in near seclusion. Our hearts ached. We did not want all the ‘what if’ scenarios that want to play out in our minds to take hold. The thought of raising a child who might need constant care for the rest of their life could be too much to bear. It could be too much as we get older. It could bankrupt us. We could outlive our child.
And what did we lose? What about the joys of seeing our child grow, make friends, fall in love and have children as well? These dreams were slowly began to fade, and mourning the loss of the dreams a parent has for their child is painful.
We made our way to the doctor’s office that following Monday. We sat silently, holding each others’ hands as they prepared Charlotte for the procedure. They placed a lock, a tiny plastic ring, into Charlotte’s stomach which would allow the thin needle to pass through and draw the fluid. As they then prepared the needle, the technician began checking the ultrasound.
“We need to be sure the little one isn’t near the needle,” she explained. “We don’t want to accidentally poke the baby.” We watched as our child moved back and forth, and finally out of sight of the ultrasound viewer.
Suddenly, a little hand came into view on the screen from out of the darkness. It seemed to brush against the lock. We watched the plastic ring wiggle a bit. Then, without warning, little fingers grasped and pulled. The lock jerked down hard. Charlotte made an audible gasp as we watched the lock bob up and down.
“Damn,” muttered the technician. She waved off the nurse holding the needle.
“What’s wrong?” I asked, my head moving back and forth from my wife’s stomach to the monitor.
“Nothing,” the technician said. “Sometimes the little ones get curious. Wouldn’t you be if something new is introduced into the only world you know?” She poked at my wife’s stomach a few times. The little hand finally gave way and the needle was quickly inserted. Before we knew it, the procedure was done and we were on our way back home.
But that one moment changed our lives forever. Our little baby, just nineteen weeks gestation, was “curious”. Our baby reached out and used its newly formed hand because something new was introduced in this little world of Charlotte’s womb. Our baby made contact with us before we even knew if it was a boy or a girl. This fragile little one said hello.
At that moment, we no longer cared about diagnoses or surgeries or anything. We knew whatever God had planned, we were going to follow it. We only wanted to know one thing the amniocentesis could answer. Yes, our baby was diagnosed with Down syndrome and with a rather significant hole in his heart. But the amniocenteses also let us know that our baby was a boy.
From that moment on, we would call him ‘Jacob’.
Photo by Thomas