Название: The Silent Son
Автор: Ken Atkins
Издательство: Ingram
Жанр: Религия: прочее
isbn: 9781631950650
isbn:
But don’t get me wrong. Raising my son has been the greatest joy and blessing I have ever known. It has taught me to be more patient, less self-centered, more organized, yet less structured. Mostly, it has taught me I can do many, many things I never imagined, but only by the grace and mercy of God.
I write this book as a message of hope and understanding for those who find themselves in this position with no idea what it means. There are no classes or instruction manuals for quick reference. There are lots of ideas, stories and suggestions that you will receive from family, friends, doctors, therapists and unlimited Internet sites. Some of it might even be helpful, but none of it should be accepted without careful examination.
Three things you should know before we start:
1 1.There is no single right way for raising your handicapped child. Every disability comes with a wide range of effects and effective treatments. Not all Downs kids are the same. Or CP kids. Or, in my son’s case, AS (Angelman Syndrome) kids. Just like normal kids, special needs kids have a million subtle and not-so-subtle differences between them and their peers with the same diagnosis. One of those differences, possibly the most important one, is you. How you adjust to this new life will have a huge impact on your beloved child (or adult). Which leads us to:
2 2.You will never totally get this the way you hope. There will be mistakes, tears, fears and moments of doubt and depression. Your old life is basically over, but that’s not necessarily a bad thing. You will find yourself thinking more intentionally about what you can do to enhance your child’s life, which may include getting rid of a lot of old, bad habits and distractions that needed dealt with anyway. One of the greatest gifts of this quarter century of raising my son has been that it forced me to do some serious soul searching and make some huge changes in how I live my life. With Angelman Syndrome, intellectual development pretty much stops at about eighteen months, so some things never change. Other than physical growth, Danny isn’t much different than he has been his whole life, but I am a completely different—and better—person. And that leads me to:
3 3.I can’t speak for anyone else, but I could not have done this without a deep faith in and dependence on God. If you find that idea foolish, then I suggest you return this book and get your refund now. Because without God, I would not be writing this; I’m not sure I would even be alive. One of the greatest results of this amazing journey so far has been realizing that God not only has a plan for Danny’s disability, but that a significant part of that plan is to lead his dad back to his own heavenly father. My own depression, low self-esteem, relationship addiction and alcohol abuse were as important to God as Danny’s mental and physical limitations. Thanks to God, working through my nonverbal son, I finally found the strength to face my life-long demons.
So here is the story of a mentally challenged young man and his equally imperfect old man, and their journey through strange and wonderful waters.
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 СКАЧАТЬ