The Silent Son. Ken Atkins

      I never planned on being a father. Having already been through a couple of failed marriages and approaching my fortieth birthday, the dream of parenthood had long faded. Besides, I was too busy trying to make a name for myself as a writer and marketing professional to worry about kids.

      Discovering that I was about to become a dad brought a crazy mixture of uncertainty, doubt, fear, dread and all those other wonderful things expectant parents feel. But as the big day approached, I began to warm to the idea.

      Very early in the morning on the first day of spring in 1992, my wife and I were suddenly jolted out of our slumber by something which we both felt but at first couldn’t pinpoint. We immediately sat up in bed and looked at each other confused and a bit fearful. I thought I had heard a pop somewhere, and my wife had felt something strange. It only took a few seconds for the sleep to clear and the reality to set in that her water had broken (about a week ahead of schedule), and off we rushed down blessedly traffic-free Dallas freeways to the hospital.

      Thanks to some good financial decisions my wife had made prior to our marriage, we were able to afford what our ob-gyn referred to as the “North Dallas delivery.” That meant a beautiful delivery suite, highly trained and attentive nurses, and an epidural applied early enough that the only way we knew my wife was having contractions was by watching the monitor.

      The delivery was totally uneventful, which was perfect for me as I was an absolute bundle of sleep-deprived, over-caffeinated jitters. Possibly the happiest moment in my life came around noon that day when the doctor placed Danny in my arms. He was a healthy, happy baby whose fine blonde hair gave him almost an angelic appearance (I’m pretty sure I’m not the first person to think that about their newborn child).

      In the beginning, life was beyond good. It was amazing. And exhausting. And frustrating. Danny was unable to nurse properly, which meant his mom had to spend lots of time pumping, and I had the opportunity to fully participate in the 2:00 a.m. feedings. His digestion was poor, leading to lots of crying, colic and long, late-night drives to soothe the beast.

      But this new normal was just fine with us. We traded our copy of What to Expect When You’re Expecting for a copy of What to Expect: The First Year and steeled ourselves for the bumpy ride ahead.

      We waited anxiously for him to do all those precious things babies do—like learning to crawl, then stand, then walk, and utter those first babbling words. But nothing ever seemed to change. At the six-month checkup, our pediatrician lectured us for raising a tyrant since he wasn’t eating any solid food yet, and demanded that we take control of the situation immediately. We did—we found a new, less condescending pediatrician.

      Despite the underlying worries, life during that time was wonderful. Danny was happy, always smiling, laughing and waving his arms. He had an aura about him that just made him glow. He wasn’t difficult, fitting easily into our small home-based publishing and marketing business. I took him to business meetings, church leadership training sessions, occasionally even to my weekly Rotary Club meetings. I was a proud father and he was the perfect companion.

      One of my favorite memories (and this happened on several occasions) was being in a supermarket or Walmart and having some lady come over and stare at Danny in his car seat in awe. “What an absolutely beautiful baby,” she would exclaim. Then she would look at me and gush, “He looks just like you!” Yes, good times indeed.

      At the nine-month checkup, Danny’s new doctor said she wasn’t sure if he was just a late bloomer or there was something more serious going on, and suggested we visit a children’s hospital in Dallas to do some preliminary genetic testing. The real answer would be much clearer by the twelve-month checkup, she said. And so we waited, and watched.

      Danny’s first birthday was a bittersweet celebration of the joy of the first year of his life, and the nagging worries about his lack of development. It was also the beginning of a life-changing journey that would take us far and wide, and run through tens of thousands of dollars in medical bills. The genetic testing ruled many possibilities out, but never gave us the definitive name for what we were facing. That was maddening, because without a name, we couldn’t begin to focus our search for the right medicine or operation or therapy that would fix things. And that was our ultimate goal—to fix this problem and make Danny normal.

      The summer of 1993 brought two big changes: our daughter Chrissy was born, and one of the members of our church life group introduced us to a Pennsylvania-based program for brain-injured children—the Institutes for the Achievement of Human Potential.

      My wife’s pregnancy with Chrissy had been somewhat difficult, particularly in the final weeks, but the delivery went just fine and we brought home another healthy, beautiful baby. Less than three months later, the four of us packed into our van and headed to Philadelphia to go through an intense, week-long session on fixing our brain-injured child.

      On the second day of our trip, we finally got the call from the doctor giving us the answer we had been seeking. The latest genetic testing had confirmed that Danny’s condition was known as Angelman Syndrome, a deletion in the fifteenth chromosome on the maternal side.

      We had questioned our pediatrician about the possibility of Danny being an Angelman child after his grandmother had seen an article in a Florida newspaper about a professional baseball player whose daughter had Angelman Syndrome. We were struck by how much this little girl looked like our son and how many of her symptoms mirrored Danny’s.

      “Oh no,” the doctor assured us. “I’ve been around Angelman kids and they are much more involved than he is. That’s a pretty dire prognosis, and I think he is much more high-functioning.”

      “Involved.” That’s a key word in the special needs world. Let’s just say that while a high degree of involvement is a good thing in a normal child’s life, the opposite is true over here on the handicapped side of the fence. Being highly involved means that your child’s condition affects a large number of basic life functions, such as walking, speech, continence, self-care and self-control.

      Put another way, if you have a highly involved child to care for, you are going to be highly involved in meeting his or her most basic needs for as long as you can provide that care. Then you get to pass that responsibility on to someone else.

      One of the things I love most about God is that He is faithful to dish out the bad news in manageable doses. I know our physician felt terrible about calling us over the Thanksgiving holiday to deliver the devastating news that Danny’s condition was severe and lifelong, with little hope of a cure. But it couldn’t have come at a better time. We were riding high all the way to Philadelphia with the promise of better, miraculous days ahead. The Institutes had done amazing things in the past with people much more involved than Danny. We believed that God had opened this door, and nothing could staunch our