"We'd like to recommend an amneosentices," was the comment of the genetics counselor.
"What are the risks? What are the chances of that test having a negative affect on our baby?" I questioned this, already knowing my answer.
"About 1 in 200."
"Ma'am, if you had said 1 in 2 million my answer would still be the same. No test!"
"But Mr. Mallette, I don't think you understand. You are both 42. With the bloodwork results we have from your wife's blood tests, and the markers we see in the ultra-sound, there is a 1 in 10 chance that your baby may be born with down syndrome."
"Termination is not an option. So why test to learn something that isn't going to change anything?"
The conversation with her went on for some time and finally we left. Brenda was crying and I was, to say the very least, not feeling much like I had been counseled.
Nicholas Jeffrey Mallette was born with Down Syndrome on July 17th, 2005. I held my little man for the first three hours of his life. My first and only baby. To say I was proud would be like saying the Mount St. Helens eruption was kinda powerful. And then they came in. The nurse took my little boy from my arms and said she'd be back in ten minutes. An hour passed. The nurse returned, telling us that Nicholas was in ICU. Problems with lungs. Enlarged Kidney. Heart valves not closing properly. I was an emotional wreck, working very hard to pull myself together. "Please God, be with my little man!"
In walked the Hospital's head psychologist. I was asked to leave so she could speak with Brenda. Reluctantly I gave her that time and went to get some coffee. I could tell this was going to be a long day. After 20 minutes I walked back in. She said she wasn't through yet. I corrected her. "I'm 50% of the situation ma'am. I'm staying."
She proceeded to tell us that we would need to get into a lot of counseling, group therapy, and be educated on the road ahead. I corrected her again.
"Okay ma'am, that's enough. I need to vent a little. SInce our discussion with your genetics counselor, I have not been overly joyed about all of the statistics based advice we've been getting. I'm not a firm believer in numbers. They are not the greatest device in measuring people and I'm a little tired of hearing seven out of ten sentences started with, 'well, statistics show that...blah blah blah.' .
"Ma'am," I said, "I don't go to church every Sunday, but my faith is very strong. Nicholas will be fine. He's in the best possible hands he could be. Trust me."
She gave up and walked out. Nicholas spent 11 days in the intensive care unit. Then he came home. One year later, we were at the doctor's office and the doctor shook her head in amazement.
"A child with Down Syndrome," she explained, "has smaller ear, nose, and throat canals. The likelyhood of infection or colds, or allergies is increased. Yet, Nicholas has never been sick. Whatever you people are doing, keep doing it!"
His heart valves corrected themselves. His lungs are normal. Nicholas has an enlarged kidney that is still functional. He's four years old now, and only been sick once. Getting him into physical, occupational, and speech therapists is about as challenging as panning for gold in the everglades. And so I have taken it all on myself. Educating myself in the best ways to help him in his independence, speech, and abilities. Ironically, he absolutely loves books. He brings them to me, and nestles himself into the crook of my arm. I read to him and he never wants me to stop. I love it!
I don't know the reasons. I don't focus on the "if only" or the "why him". I focus on his happiness. I am more proud of his little accomplishments than I have ever been of anything else in my life. Nicholas is my world. When I'm down or feeling like the struggles have gotten to be too much to handle, I pick up my "little bitty man," and those feelings vanish. He is amazed with life. He's happy. He has Trisomy-21. That is, one extra chromosome within his genetic code. Nicholas is not a child lacking in love. He is never hollered at. He is cherished by both his mother and myself. He is our little bundle of sunshine on the cloudiest of days. In a room full of people he is the energy that brightens the smiles on everyone's face. He's here on earth for a very important reason. Nicholas truly is the boy with something extra.