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From the Jan/Feb, 2014 issue of Touchstone

 

The Gift of Greg by Karen Hoppe

VIEWS

The Gift of Greg

Karen Hoppe on My Special-Needs Son as an Agent of Grace

Our youngest child turned 23 last Friday. Because he was starting a new job on Monday, he had Friday off, so he celebrated by taking his parents out to lunch, with money he had earned. He attended a dance that night, partied with his friends on Saturday, and went to his favorite steakhouse for Sunday dinner with his parents and the sister who lives in town—with Mom and Dad picking up the tab this time.

It was pretty much the perfect birthday weekend.

The Call in the Night

Flash back 23 years to his birth: the culmination of an unwanted and difficult pregnancy, a pregnancy I had greeted with anger and embarrassment. I already had two wonderful kids, a boy and a girl, and didn't need or want any more. My mother was furious that I had gotten pregnant—she saw this pregnancy as a burden on me, and now I'd have even less time to spend with her, a recent widow. Add guilt to the other things I felt.

Then, during my seventh month, the doctor found a melanoma on my arm, and there was a frantic week of biopsies and surgery, and the worry of having to deliver the baby early so treatment could begin. Melanoma, however, only responds to cutting; there was no chemotherapy to be done. After losing a sizeable chunk of my upper arm, I settled in to wait for the arrival of the baby, somewhat chastened by my close call.

Greg arrived two weeks early, after a ten-hour labor. Between his weak cry and the spike in delivery room activity immediately after his arrival, I suspected that something was not right. Within minutes of birth, the doctor leaned over and whispered to me, "They think your baby has Down syndrome."

My rector once referred in a sermon to "the call that comes in the night and changes your life forever." That certainly characterizes the arrival of a child with a disability. All your plans and expectations for the future are radically changed, if not destroyed. For most of us, with no prior experience dealing with disabilities, it's a total unknown. All you can see are the limitations—on his intelligence and physical coordination; on your budget, since medical bills will surely be constant; on the other siblings, who now must adjust to a very different family; on your time and responsibilities as a parent, which now apparently will last forever. The future becomes frightening. I remember telling a friend that my life was over. We had refused prenatal testing because we are pro-life and would not consider abortion, but the specter of a handicapped baby still scared me. I was quite sure I could not be a mother to a special-needs child, and I had told God that in no uncertain terms many times during this pregnancy.

And yet.

Lessons & Revelations

One of the problems with being human is the inability to see the future. You think you do, but it's never quite in focus, and it's never a complete vision. What I know now but didn't know then makes quite a list:

• That people with Down syndrome may indeed be mentally and physically handicapped, but they nevertheless have unique abilities and personalities. One of our friends with Down syndrome is a cheerleader and skis on black diamond slopes; others work in offices, catering companies, and preschools; our son lives to perform on stage in musicals. The syndrome may give them attributes and disabilities in common, but they are still unique individuals.

• That mental abilities can take many different forms, including the ability to finagle what you really want. There are often many ways to reach a goal, and darned if Greg doesn't find them. Never underestimate the power of perseverance and a disarming smile. "He may be retarded, but he's not stupid" became one of our earliest mantras, and that's true for many other families I know. And don't even get me started on Greg's sense of humor, which is legendary.

• That in times of crisis with Greg, we would be given the grace to get through it and emerge stronger on the other side. You may think you know this from your faith—as should we all—but going through the fire reinforces that knowledge as nothing else can.

• That true to everything you've heard, one of the charisms of Down syndrome is the ability to love without restraint, without judgment, without regard to external characteristics, and with complete joy in every day. How many times Greg has come to give me a hug because he sensed I was troubled by something, and how many people through the years have told me that Greg changed their day by his cheerful attitude and obvious concern for them.

• That the appreciation of nature, music, friends, family, weather, humor, art, food, and a host of other gifts from God is not dependent on IQ. I knew this fact before Greg's birth, but not as deeply as I know it now. To watch Greg's delight in these simple pleasures is to see how God wants us to enjoy them: from the heart, without pretense, without worry.

• That the value of daily work—a job—is independent of the nature of the work. After high school, Greg trained at various jobs over three years: at a retirement home, a middle-school cafeteria, an architect's office, and a catering company. For the past year, he's worked in housekeeping at hotels. He has enjoyed all his jobs and takes great satisfaction in each day's work, from the time he packs his lunch in the morning until he hangs up his uniform at night. Most of these are jobs the world considers menial; Greg gives them the respect they deserve, and I am told he does his work well. His attitude reminds me that honest work done to the best of one's ability is ennobling to the human spirit, as wiser minds have long noted.
• That it is a balancing act raising any child, but raising a child with a disability makes you feel like you're on a high wire without a net. One's family, friends, and community know how to support typical kids, but a special-needs kid can make you feel very alone sometimes. You learn to assert your child's rights, to look for help when you or he needs it, and to keep looking until you find some sort of solution, perfect or not. You learn what it means to "do the best you can," and that you must apply that standard uniquely to each person, including yourself. As a consequence, you develop aspects of character that might have escaped you without this child, yet they are characteristics that make you a better person.

This last point may be the most important one of all. As the parent of a special-needs kid, you learn early on that you have been given the "gift" of seeing the world the way God does. I put "gift" in quotes because it's not an unalloyed joy. God sees a lot of bad stuff. So do you. You see the sadness, the pain, the failures, the fear, the prejudice, the ignorance. Sometimes it's overwhelming. But you also see moments of transcendence. I can't even count the number of times that Greg, just by being who he is, has called forth a kind response from a stranger, a smile from someone who was frowning, an upbeat attitude from a cashier who was clearly dragging, or an unexpected assist from someone who went out of his way to help him. Greg has built bridges for me, often to people I disliked or had problems with—he was nice to them, they responded in kind, and suddenly we had commonality. It's a gift that inexorably draws you closer to God.

An Echo of Angels

There's also something unique in the way we react to the successes of these kids, who must work so hard to achieve things the rest of the world takes for granted. Ever notice how often, when someone with a disability achieves a goal, there are tears among the onlookers? I've seen it in therapy, at Special Olympics meets, at special-ed graduation ceremonies, everywhere. It took real struggle to achieve those goals, and the joy of the achievement tugs at the heart. But why should these little, everyday successes have such an impact on us?

I wonder if it's because they're an echo of how the angels react when one of us learns something difficult that they take for granted—like loving your enemy, or forgiving a truly hurtful wrong, or sacrificing something for a greater goal or because of love. Maybe it's all the same sort of rejoicing, and for that brief moment, we're in synch with the angels, and our hearts know it, and we find that knowledge overwhelming.

Several years ago, I was following Greg down the hall at his high school at the end of the day. He was due at play practice, and I had to be there as well, so we were making our way through the crowds. I noticed Greg saying hello by name to almost every kid he passed, and getting smiles and high-fives in return. Now, Paul VI Catholic High School has a mission of integrating kids with intellectual disabilities, and they do it superbly, so I was accustomed to everyone being nice to him. But I began to sense something else going on.

Then I realized that, if parents of special-needs kids see the world as God does, then Greg (and those like him) see people as Jesus does: without regard to popularity, skills, intellect, money, "coolness," or any other irrelevancies. Greg likes people for themselves, just as they are. Each one of his classmates was important to him. That's what the other students were responding to. Everyone wants to be loved that way.

Grace upon Grace

What a terrible irony that, of all the genetically imposed disabilities out there, the first to be diagnosed in utero would be Down syndrome. Now we have the power to eliminate these kids before we ever meet them. That power has led to the near-eradication of Down syndrome births: about 90 percent of all such babies diagnosed during pregnancy are aborted. How much love has been taken from a world that desperately needs it because of this! Greg and people like him are a constant, often surprising source of moments of grace, moments of connection with the divine. Yet Down syndrome was the first disability to be marked for elimination. The irony is heavy enough to make you think the devil was involved.

I understand the fear that parents in Down syndrome pregnancies feel—I was there as well. The world will give you plenty of reasons to abort your child, and will make you feel like a fool for carrying the child to term. Some will even make you feel that you are sentencing the child to a miserable life by bringing him to birth.

As I write that, images flash through my mind that I never expected to see when Greg was born: Greg making pad thai (with good knife skills!), performing on stage, serving at the altar, running track for Special Olympics, singing in the choir, cheering with friends at a football game, enjoying a play, earning First Class in Boy Scouts, looking up movie info on the internet, reading his beloved yearbooks, making a special present for someone at Christmas. The way he achieved all these things might be different from the way typical kids do them, but they are definitely Greg's achievements, done his way. I have revised my concept of what constitutes a successful life because Greg has shown me that God's standards—to strive against your challenges, to enjoy life just as it is, and to love with your whole heart—are better.

So last Sunday night I sat and watched the sun set after Greg went to bed. It had been a very busy weekend, after all, and he had a new job to report to the next morning. Had you told me, on the night of his birth, that I would be in this place 23 years later, I would have thought you a witless Pollyanna. Never could I have foreseen all that Greg has brought our family.

Our faith gave my husband and me the courage to refuse testing and forge ahead with this unwanted pregnancy. God returned the favor by giving us insights and joy we never anticipated. I thought I was being such a martyr for carrying this child; instead I have been the recipient of more than I could ever have wished for—"grace upon grace."

For those who have learned that they are carrying a Down syndrome baby, I have just one thing to say: Be not afraid. Sometimes when you step out in faith, you find you don't even need the net. Good things are coming that you cannot predict or imagine.

Be not afraid. • 


Karen Hoppe is a stay-at-home mom of three—two grown and on their own, and Greg, who lives at home. She married fellow Capitol Hill staffer David Hoppe 37 years ago. Karen is Anglican and the rest of the family is Roman Catholic.

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“The Gift of Greg” first appeared in the Jan/Feb 2014 issue of Touchstone. If you enjoyed this article, you'll find more of the same in every issue. Support the work of Touchstone by subscribing today!

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