Thinking Out Loud, Volume CCLXIII

"We're supposed to be a normal family. Really good things, like winning the lottery, don't happen to us. Really bad things don't happen to us either. Those things only happen to other people. Isn't that the way it's supposed to be?"


I've told you this before, but I'm a different man than I was this time a year ago. What changed me? Can you believe it was a little infant girl? Her name is Lennon, and yesterday we celebrated her first birthday. These last twelve months have been a roller coaster ride, and sometimes roller coasters are pretty scary.

I'll never forget March 24, 2010. We got up very early that morning and headed to the hospital, all excited about the arrival of our second grandchild, who, coincidentally, would be arriving just one day after we had celebrated the fourth birthday of her big brother. As soon as she was born, her dad (my son), brought her out into the hall so we could see her, but the nurse told us that they needed to take her to NICU to check out some things, just as a precaution. Little did we know at that time that she would remain there for several weeks. As we sat there impatiently waiting for them to bring her to the little room where we could look through the glass and see her, we received a text from her dad. It simply said, "Please pray...they're testing her for Down Syndrome." I can recall so vividly how chills went all over my body as I read those words. "This can't be happening. That kind of thing happens to other people...not us." There were some telltale signs that the doctors and nurses had spotted right away that we laymen didn't know to look for, like some issues with the back of her neck and the single horizontal line across the palm of one of her hands, among other things. Just one of those symptoms may not mean that much, but all of them together....it was pretty likely. Still, we kept praying and hoping against hope that it wasn't so. Angie and I decided that we would not let the words "Down Syndrome" come from our lips until we knew for sure, therefore, many of our friends didn't hear about it for several days.

I was teaching a class on Wednesday nights at our church at that time, and I was scheduled to teach the night of Lennon's birth. As I stood up to teach that night, I had never felt such a mixture of emotions as I was feeling then. I was a proud new grandfather of a beautiful baby girl, and the congratulations were coming to me from every direction, yet my stomach was in knots, and I didn't feel at liberty to mention my worries to anyone. I simply told the class that I had something weighing heavy on my mind and I would like for them to help me pray about it. Just knowing that I had some good friends helping me pray, although they didn't know what they were praying about, was a great help to me.

In a few days, the tests came back positive. We had learned a lot during those few days, and one of the things we learned was that there are some heart conditions that often go along with Down Syndrome. To make a long story not quite so long, well, Lennon had that too. She went into heart failure before she was five weeks old, resulting in open heart surgery; yes, the kind where they open up her chest, stop her heart, and go in there to repair the defects. As I stood there looking at her just a short while before her surgery, I spoke out loud to her, and made her a solemn promise as well as a prediction, though I knew she couldn't understand a word I was saying. Those words were for me as much as they were for her. The promise was: "I'm going to tell you 'I love you' every time I see you." I'm trying my best to fulfill that vow. The prediction was: "You are going to love me with all of your heart." I'm gonna see to that.

When she came out of that long seven hour surgery, with all of the tubes and wires that were coming out of her nose, mouth, and chest, she didn't even look real. That was on Thursday. On Sunday afternoon, that little baby who had never been awake for more than fifteen minutes at a time, stayed awake for six long hours. Wow! Success!

There have been some ups and downs since that day, but overall, it has been a period of steady recovery, both for her and her family. As a family, we have learned that to have a child with Down Syndrome is not the end of the world. In fact, it's the beginning of a whole new, wonderful world. I made up a little song that I sing to her, and she loves to hear it. (I wonder how long that will last.) She's already standing unassisted for a few seconds at a time, and we expect her to take her first steps within a matter of days. She is so happy, and, as a result, has brought us more joy than we could ever describe. One may ask the question, "If you had the chance to go back and start everything over, wouldn't you want to bring her back without Down Syndrome?" The answer is, "Of course. But the way she lights up our lives, it's hard to imagine her any other way than the way she is right now."

Preston