Welcome to Holland

By Brenda Gordon

When you’re going to have a baby, it’s like you’re planning a vacation in Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases in Italian so you can get around and then it comes time to pack your bags and head for the airport - for Italy, Tuscany of course.

Only, when you land, the stewardess says “Welcome to Holland”. You look at one another in shock and disbelief. “Holland? What are you talking about? I signed up for Italy.”

But she explains there’s been a change of plan and you’ve landed in Holland and there you must stay. “But I don’t know anything about Holland! I don’t want to stay” you say.

But you stay. You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed. The important thing is, you are not in a filthy, disease-infested place full of famine and flies. You are simply in a different place from what you had planned. It’s slower than Italy, less flashy that Italy, but after you’ve been there a while and you’ve had a chance to catch your breath, you begin to discover that Holland has windmills - and tulips - and Rembrandts.

But everyone else you know is busy coming and going from Italy. They’re all exclaiming about what a great time they had there, and for the rest of your life you’ll say, “Yes, that’s what I had planned.”

The pain of that will never go away. You have to accept that pain, because the loss of that dream, the loss of that plan is very significant. But if you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

After the initial shock of my third pregnancy, we consoled ourselves that this would be the daughter I always wanted. Then complications introduced a whole raft of unwanted procedures for two non-interventionist parents whose two other sons had entered the world so easily.

Adrian was delivered at 33½ weeks weighing not quite 1½ kilos and had to be incubated in the Intensive Care section of the neonatal unit. His weight gain was slow, but after 5 weeks he was allowed to come home. During the first night he developed a strangulated bowel and vomited a stool and had to be operated to correct an inguinal hernia, then a second hernia at 6 months and a third at 18 months.

Around the time of the second operation, because of Adrian’s failure to thrive, we were hospitalised to start bottle-feeding him formula, and at this time the paediatrician suggested that Adrian might have Williams Syndrome - a condition we’d never heard of. Armed with discouraging black-and-white 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, 1 in 7000, which results in retarded physical and intellectual development. The geneticist explained that the condition results from the deletion of a stretch of genes on one of the 7th chromosome pair. She said she would prefer not to make a firm diagnosis until Adrian was at least 2 years old, giving us a faint hope that maybe the experts were wrong. But Adrian couldn’t even smile until 9 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 one time sitting on the bed shaking and saying, “I can’t do this”. The only way to survive was to give it all to God. This was that time in the lines from “Footprints”, in which we read:

 “My precious child, I love you and would never leave you.

  During your times of trial and suffering, when you saw only one set of footprints,

  it was then that I carried you.”

He did this in many different ways, and still does. I had a guardian angel in a friend from church who would unexpectedly drop in at critical times. She would hang the washing on the line the way I do it, and she was the only other person ever to vacuum my house.

We waited until Adrian was 3 to have his diagnosis confirmed by a blood test finally available in New Zealand. We had well and truly landed in Holland. He didn’t walk until he was nearly 4 and started school with single-syllable sounds, although you wouldn’t guess that now from his verbal self.

He is now 12½, and if he were here today you would all quickly know him and experience the love and affection that exudes from him. And he is one of the biggest evangelists out. Let me quote from a note his teacher aide sent home when he was 7.

Dear Brenda
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. It was so cute.”
Rose

One of our members told me how one day she went to church feeling quite depressed and as soon as Adrian walked in the door he went over to her and gave her a big hug. One description of Williams people is that they are mind readers.  When my husband invites friends and work colleagues home for dinner, Adrian always makes a point of thanking God for the meal and for the visitors. I should mention, too, that we always have a segment in our church service when we have an interactive children’s story. Adrian is always an enthusiastic participant.

We have some incredible neighbours who have shared their lives with Adrian. Adrian stays with them occasionally and their daughters look after him during school holidays sometimes.  One of the daughters has journeyed through depression and suicide the past few years and Adrian has topped up her emotional tank many times, as she has his.

When he stays with the family over a Saturday night, he goes with them to the local Catholic church the following morning. The first time he went there he called the priest “God” - something to do with the robes he wears, perhaps - so he was an instant hit. A few years ago, in the midst of the widely publicized crisis over child sexual abuse in the Catholic Church, the priest had the opportunity to deliver a homily to a parish in Chicago. In it, he spoke about Adrian, and I quote

“Let me conclude with a story from our Easter vigil at my parish of St Joseph’s in Wellington, New Zealand. Once a month, a little boy comes to mass at St Joseph’s with Sean and Anne, who give his parents a break for the weekend. His name is Adrian and he is [8] years old. Adrian has Williams Syndrome [a bit like] Down’s Syndrome. Adrian calls me ‘God’! He always bounces into the church foyer, and, when he sees me in my vestments, says “Hi God!”. He has wonderful insight!

At the Easter vigil, after the lighting of the Easter fire, we proceed into the church, candles lit, to listen to the Liturgy of the Word. After singing the exsultet, we blew out the candles and, in the darkness, listened to the readings. After each reading and prayer, a few more candles were lit by the lectern, so that, by the time of the Gloria, the whole “nest of candles” and the church is bathed in light.

After the first reading, when only a few candles were lit, Adrian came up into the sanctuary and over to me. He put his arm around me and said, “Hi God, how’s it going?” “Great, Adrian!”, I replied, “I think it’s going well.” “So do I” he said, “so far, so good!” He then asked me, “Hey, God, will we get to light our candles again?” “Sure”, I replied, “but first of all we must listen to the readings from God’s Word …”

My friends, we will come through this crisis and we will be stronger for it, but we will only be able to light the candles of trust and faith again to the degree that we listen to the Word of God and make Christ the center of our hearts.”

At my husband Dennis’s 60th birthday celebration last December, Adrian announced to the whole group of church friends, neighbours, and science colleagues that he was going to marry Katy and Poppy!

We have two other sons - Tim, 24, who lives in Melbourne and works for AusPost, and Caleb, 21, who is flatting while pursuing a Science Technology degree at Victoria University in Wellington. The impact on their lives has been very strong, and also on their friends. They all know Adrian. At parties he would fetch their beers from the fridge and tell them off for smoking - especially his brother Caleb, if he caught him. His brothers will always care for him, and when they travel they always want to talk to him first when they call home.

Adrian’s best friend at intermediate school is a Down’s boy called Eddie, who has quite severe speech difficulties, but they complement each other in their respective strengths and deficiencies. They also stick up for each other. They both attend swimming lessons after school and get together with other special-needs friends. We mothers sit on the sidelines and watch, talk and network with each other.

I would like to quote from an article Dennis wrote a few years ago.

I like the descriptor “special needs”. That exactly describes Adrian and others like him. He is a ‘normal’ human being. He just operates at a different level according to his abilities. He laughs, he cries, he plays, he interacts. He thinks, he reasons, he schemes, and he solves problems. Above all, he loves and thrives on love. Because his needs are more obvious, it is easy to respond to them. I have been far more gentle, merciful, understanding, and forgiving with Adrian than with my two other boys. Perhaps this comes with age and experience, but there’s no doubt that his very needfulness evokes my compassionate response. One needs to look at all “special needs” people in a different way.

Actually, my relationship with Adrian has helped me to understand a lot about God. We human beings may be a wonderful creation but, behaviourally, we are a pretty pathetic lot. We are so error-prone, so extraordinarily susceptible to character weakness like pride, lust, greed, selfishness, and just plain orneriness that I often wonder why God bothers to deal with us. I really think God must consider human beings as quite spiritually retarded. That would seem to be a more serious condition than mere mental retardation. Fortunately God understands our condition and how it came about. God loves all human beings, but the ones he finds particularly irresistible are those who admit they are “special needs” and want his help.

At one level, 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.

It explains why God is able to love the sinner. He is not put off by the spiritually retarded human condition. Rather, he is attracted to it, so as to alleviate it. 

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned. I reflect back on those years of the past when I first landed in Holland. I remember my shock, my fear, my anger - the pain and uncertainty. But in Holland I met others whose plans changed like mine and who could share my experience. We supported one another and some have become good friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me in my inexperience. I have discovered a community of not only special-needs people, but special people. Holland isn’t so bad.

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? Sure, this journey has been challenging, and at times I would (and sometimes still do) protest in frustration and concern.

I have come to love Holland and call it home. I have become a world traveler and discovered that it doesn’t matter where you land. What is more important is what you make of your journey.

Never forget: “The will of God will never take you where the grace of God will not protect you.”