Little Treasure

The word “Jasper” means “treasure.” We chose our baby's name before we knew he was a boy, and we never even thought up a name for a girl. This is a funny story because a girl would have been a surprise, but a child with a birth defect called Down syndrome – and the “life sentence” that goes with that diagnosis – was something for which I was completely unprepared.
When I look back on the first days of Jasper's life, I can't feel that grief, fear and rage anymore. But I remember the facts of my experience. I remember that my life fell apart as I strived to navigate new medical territory and sort through a lot of prejudices while the professional body responsible for these matters steamrolled me with its own ongoing agenda. I never did sort out what part of my post-partum depression was normal, and what part was because of our society's absurd attitudes toward these rites of passage into parenthood and into the world of special needs care.
My grief was for this beautiful new child who was destined, according to the stereotype I understood, to a second-rate life of “mental retardation,” physical disability, social ostracism, and inability to father children or support himself, let alone enjoy autonomy as a fully-mature man in a competitive world. I also learned that he was destined to develop Alzheimer's disease by the time he was my own age.
Next was trying to shield my young family from the negative attention of others. After the first few well-meaning but really stupid comments such as, “poor Lishui, such a terrible burden!” or (from a close relative), “I see no family resemblance,” I decided to stop telling people that he had Down syndrome. I felt it would be better to appear to be living in denial, forcing others to adapt to my fragile emotional state, than to listen to one more respected friend or family member say something really stupid.
A person who receives the information about Down syndrome that I received experiences a lot of nasty feelings. The prognosis and the so-called facts that are presented offer no way out, no solutions to the disability side of this condition. In fact, it's considered quite inappropriate to think in terms of solving a problem. I've come to understand that others didn't want to hear my crazy talk about when Jasper would grow up and go to university or be a “ladykiller.” People thought my joke “I'll keep him” was in bad taste. (Okay, so it was) People just wanted me to “accept this child as God made him.” I was stuck between sacrilege and a hard place.
My journey out of this dark place began at the instigation of Jasper himself one morning a couple weeks after he was born, when I was awakened by a bop on the nose. My eyes popped open to reveal a newborn staring at me with the delight of having achieved his goal. Despite his early health problems, and his label, his high and mischievous intelligence has since then been my rock foundation from which to battle the prejudices of the society in which I live.
This is not to say that I haven't had many problems related to Down syndrome, which is practically synonymous with "intellectually-disadvantaged," or “mentally-retarded.” There are the therapists who cannot and will not see his intelligence because it is contrary to their training. There are the pediatricians who expect nothing of him except illness. There are the well-meaning Mother Hens who go on for twenty-five minutes about how well I'm holding up. There's also the Positive Attitude type who remarks what a trooper I am for loving my son anyway. In a category all their own are the Educators who simultaneously want to get him into the (school) system as quickly as possible, and can't stop complaining about how inadequate that system is. What an experience it is to be condescended to and appealed to in the same breath!
Yes, Jasper's syndrome has sometimes been an intellectual issue... but it has nothing to do with Jasper's intelligence...
Many other angels have helped me out of the dark place where I was grieving 33 months ago when this particular learning experience began. My midwife insisted that this child is a gift. My best friend Marilyn just loved him to bits and expected from him nothing less than any other child. An intern at Toronto's Hospital for Sick Children said, “Heavens, there are a million things worse than Trisomy 21.”  Jasper's cardiologist, Dr. Norman Musewe, somehow made open heart surgery seem like a routine matter; this deeply-spiritual man couldn’t wait to get onto the more interesting topics of God and ethics. There were many others who just happened to say the right things at the right time, mostly because they saw Jasper for who he was – a bright, fun, observant child, unique in his personality just like all children are. Not a “terrible burden.”
The first crucially-important angel I found in this journey was Glenn Doman of the Institutes for the Achievement of Human Potential  in Philadelphia. Over more than fifty years, the Institutes has helped tens of thousands, no matter how challenged or hurt, on the path to wholeness and wellness. The goal is always the same: physical, physiological, intellectual and social excellence. The late Dr. Raymundo Veras opened up the Institutes' programs to children with Down syndrome, often leading them to complete normalcy (if you call reading, writing and understanding advanced math and multiple languages by age six “normal”). In his honour, kids like Jasper are called “Veras kids.”
The latest angels in my life are people whose ideas are even less acceptable than those of the Institutes to our current cultural mindset. These are the teachers and therapists of the German New Medicine. The New Medicine has turned out to be a big part of my professional calling.
This journey has taught me a great many things about love and life. Perhaps the biggest lesson has been about labels and stereotypes and how agreeing to them can become imprisonment for so many of us even when it's mostly myth. My only advice to parents and to people who have any label is,

no matter how many people believe an idea, it is not real unless you believe it to be real.

Glenn Doman at the Institutes for Achievement of Human Potential said that a syndrome is a collection of symptoms named after some guy who can't find an actual disease. I no longer believe in “Down syndrome.” I approach Jasper's challenges and unique gifts creatively, with the same goals everyone has for their children, not the goals of “acceptance,” “tolerance," or "coping.” I am watching his measured disabilities slowly but surely fade away. As a bonus, I find myself a relative expert on so many things I didn't know much about before: humanity, education, love, neurobiology, health, motherhood, society, ecology and disease, to name a few.
If I have any grief now, it's the relationships that have ended through this experience, but that has only made room for more meaningful ones. Moving beyond convention and tradition is also frightening, but it's exhilarating too. I also mourn my inability to take all that I have learned and help the world with it to anything near the extent I want to, but perhaps that's just the next challenge life is giving me. If it is, then I know it will be hard but I will meet the challenge and it will make me even stronger. If I grieve now over anything related to my son himself, it is that most Veras kids have not been nearly as fortunate as he's been.
Sometimes when I watch other people with kids, I don't understand why we all aren't continuously marveling at the incredible achievements that children make. Perhaps they're just not appreciating their rainbows because they didn't sit out in a cold drizzle for a while first. When Jasper was born, I mourned about the lost potential of my dreamed-of “perfect” child. But my son has presented me with the option of moving away from the known toward the unknown and that has been the greatest blessing of my life. I find the dreams and expectations I had for my unborn child fulfilled beyond my wildest imaginings... and he's only two!
I've come an enormous distance since just three years ago when I lived for (all-too-short) weekends and my career dominated my life. Through this journey, I've learned wonderful things and I have broken through many barriers. Now I do what I love – write, teach, raise my child, and help to heal my world.

It didn't take winning the lottery to live the life I love, it took a Treasure.

(This article was first published in early 2007 in the magazine “Life’s Challenges”)