“Welcome to Holland” is an insightful essay written in 1987 by Emily Perl Kingsley about the shock of giving birth to a disabled child. Kingsley compares the experience to a carefully planned and much anticipated vacation to Italy in which your plane lands not in Italy, but in Holland, a country you had not prepared for. You hadn’t read the guidebooks or studied the language. You lacked hotel and rental car reservations or even suitable clothes. You simply hadn’t planned on visiting Holland.
“I don’t know anything about Holland,” you protest when you land at the airport. “I don’t want to stay!”
But stay you must. You have no choice. You buy a new guidebook, get a dictionary, and begin learning all you can about a place in which you never wanted or expected to be. The good part is that you are not in an evil or dreadful place, just a very different place from what you’d planned. And after you’ve been there a while, you begin to discover that this new country has its rewards.
|Eddie (left) and Adrian |
The will of God will never take you where the grace of God will not protect you.
I understand exactly how Emily Kingsley must have felt. She bore a child with Downs Syndrome. I had one with Williams Syndrome, a different genetic condition.
The initial shock and fear fade with time. You realize that if you spend your life mourning about not experiencing “Italy,” you will never be free to enjoy the special things about “Holland.”
My third pregnancy, at age 40, came as a shock. We had not planned to have more children. But my husband and I consoled ourselves that this would be the daughter I had always wanted. Surprise number one was that I gave birth to a son, whom we named Adrian. Then delivery was complicated by the need for a raft of unwanted procedures, this on the part of two non-interventionist parents whose two other sons had entered the world so easily.
Adrian was delivered prematurely at 33½ weeks weighing not quite 1½ kilos (just over 3 pounds) and had to be incubated in the neonatal unit. His weight gain was slow, but after five weeks he was allowed to come home. During the first night Adrian developed a strangulated bowel and vomited a stool and needed an operation to correct an inguinal hernia. There was a second hernia operation at six months and a third at 18 months.
About that time, because of Adrian’s failure to thrive, I was hospitalized with him so he could be bottle-fed on formula. The paediatrician suggested that Adrian might have Williams Syndrome — a condition we’d never heard of. Armed with discouraging photocopied photographs of not-very-attractive-looking children, he explained that Adrian’s elfin features, slow growth, and hypercalcemia were symptomatic of a rare genetic condition that occurs in one in 7500 births, which results in retarded physical and intellectual development.
The geneticist explained that the condition results from the deletion of some genes on one of the seventh chromosome pair. She said she would prefer not to make a firm diagnosis until Adrian was at least two years old, giving us a faint hope that maybe the experts were wrong. But Adrian couldn’t even smile until nine months old — not a good sign.
That first year was hell for me. It was a time when I put God at arm’s length. I remember sitting on the bed shaking one time and saying, “I can’t do this!” The only way to survive was to give it all to God.
We waited until Adrian was three to have his condition confirmed by a diagnostic fluorescence test on his chromosomes. I had well and truly landed in “Holland.” He didn’t walk until he was nearly four and started school with single-syllable sounds, although you wouldn’t guess that now, for he is quite talkative. He is 15, and if you met him you would quickly know him and experience the love and affection that he radiates. And he is an effective evangelist! When he was seven, a teacher’s aide sent home the following note:
“Today I came to school with a broken toe and couldn’t wear my shoes in class. Adrian was very concerned and said to me, after giving me a big hug, “Please God, give Rose toe big kiss, make better, Amen.” I was so touched I thought I would share it with you. Nobody has ever said a prayer for me.”
One characteristic of “William’s people” is that they are mind-readers. Certainly they are empathetic. One of the members of the church I go to told me how one day she was feeling quite depressed. As soon as Adrian walked in the door he went up to her and gave her a big hug. When my husband invites friends and science colleagues home for dinner, Adrian often makes a point of thanking God for the meal and visitors, and usually gets everyone holding hands, generally to the wry amusement of non-Christian guests.
Adrian’s best friend at high school, where he is mainstreamed, is a Down’s boy called Eddie. Eddie has quite severe speech difficulties, but Eddie and Adrian complement each other in their respective strengths and deficiencies. They also stick up for each other. They both attend swimming lessons after school with other special-needs friends. We mothers sit on the sidelines and watch, talk, and network.
My husband says Adrian taught him something important about God. Just as Adrian, a special-needs child, evokes our compassionate response, so do people with special spiritual needs, who are trapped in their self-destructive life styles. God understands their condition and how it came about. He loves all people, but the ones he finds particularly irresistible are those who admit they are “special needs” people and want his help.
In a sense, this world is an incubator for the children of God, a kind of spiritual neonatal unit in which God sees helpless individuals fighting to survive. His heart is captured by our vulnerability. God is not put off by the spiritually retarded human condition. Rather, he is drawn to it so as to alleviate it.
I have been in “Holland” for 15 years. It has become home. Here I have met others whose plans changed like mine and who could share my experience. We supported one another and some have become good friends. Sometimes I wonder what it would have been like if I had landed in Italy as planned. Would life have been easier? Would it have been rewarding? Would I have learned some of the important lessons I hold today? The journey has indeed been challenging, and at times I would (and sometimes still do) protest in frustration and concern. But what is more important is what you make of your journey. Someone wisely said: The will of God will never take you where the grace of God will not protect you.
Brenda Gordon lives in Wellington, New Zealand.
Author: Brenda Gordon