Thursday, January 7, 2010

We Got Lost on the Detour, Part I

This post written by Sandra & Murray MacDonald. Excerpt from "The Ideal Way to Cook: Food for Thought".

Have you ever been on a road trip where you sort of have a planned destination? Oh, you know you'll get there, but in the process of connecting the dots from start to finish you can choose several different routes. You know that depending on which road you do down, your trip can end up being wonderfully exciting and memorable or if you choose badly, it could be the road trip from...well, that place where it's very hot! But the one thing that is true for all long road trips, is that they are unpredictable...anything can happen at any time. Detours due to road construction, washed out bridges, bad weather ahead, etc., always wreak havoc with well laid plans.

When my husband, Murray, and I got married, we started planning and connecting the dots to map out an exciting route to live our new life together. Our final destination was retiring before 60 to live on beautiful Vancouver Island and traveling all around the world doing exciting things like skiing, sailing, canoeing, trekking, etc., etc. En route we would have fulfilling careers and four children. Our starting point was being unemployed teachers, but a couple of alternate routes eventually landed us jobs and our first new home.

The first major detour came with the conversation, "I'm going to be 30 soon and we haven't any children yet!" That detour was very bumpy but short and soon we were back on track with son number one in tow. The biological clock was still ticking loudly so another detour quickly developed with son number two arriving 18 months later. My second pregancy was uneventful as were the first four days of our new baby's life; he nursed well and was a happy and attentive baby. I was looking forward to returning back to teaching.

But on day five, our little family unexpectedly got rerouted onto a sudden detour. Actually, totally derailed would more aptly describe it! A doctor I had never met before walked into my hospital room and without introducing himself, matter of factly said, "We think your baby is a mongoloid" and promptly left the room, never to be seen again! I didn't know it at the time, but our road trip was now detouring down a very long, dark tunnel, with no light at the end. As each day passed, we got more and more lost on this detour. The road trip had crashed to a sudden halt, or so we thought. The next few weeks passed by in a blur of despair, guilt, profound sadness, fear, grief and an overwhelming sense of being lost and helpless. Well-meaning people would "console" us with "God gives special kids to special people" or "Just take him home and love him". My father's words when I told hm the baby had Down syndrome still ring cruelly in my ears..."He'll always be a stone around your neck."

Our family doctor could tell us nothing about a future prognosis. I hoped to get information from the McMaster Hospital medical library (no internet in the 80s). But the only three books they had were hopelessly dismal accounts about individuals in the 1940s who had lived in institutions their entire lives. Those books were the only information that training new doctors and nurses would get their information about Down syndrome from. I cried as I tossed them into a roaring fire in my fireplace. There were no recently written books to buy anywhere. My baby was mentally handicapped and I couldn't find any information to teach me to help him. A fog of fear, uncertainty, and hopelessness continued to cloud our route. As the weeks slowly stumbled into months, it often felt like we were riding an out-of-control roller coaster in that same dark tunnel.

Thankfully, I did not know that we would be detouring on that emotional roller coaster for the next 25 years.

A tiny ray of sunshine broke when our son was seven months old. We attended a three-day conference on Down syndrome in Chicago. We were absolutely overwhelmed when we walked into a meeting room to see 2,500 parents who all had children with Down syndrome! We were not alone on our detour. We attended workshops, seminars, lectures, presentations and social events, literally soaking up what felt like tons and tons of information and...hope!

There was so much we could do to help our son, Neil, to learn. That conference was a wonderful bridge, which helped us cross over troubled waters and find another detour down a brand new road called ADVOCACY. As we were to find out, that road was constantly littered with huge potholes, missing road signs, switchback turns, and sudden descents, but ultimately it took us, and continues to take us, higher and closer to our original road trip route.

Photo: xerezh



Tara said...

I often think about you parents who paved the way to acceptance and inclusion for my son. I am forever grateful for the work that you did! I cannot imagine my life on this journey without my on-line support groups and blogging friends and I think your courage, as you embarked on this road alone, is nothing less than remarkable. Thank you!

Maureen Lee said...

Thank you, Tara, for visiting our blog. I agree that people like Sandra and Murray MacDonald are remarkable, indeed. They saw a gaping void in the DS community and went to work to transform it. And their son, Neil, is a remarkable young man. I have included photos of him in previous posts - it seems there is nothing he cannot do (he submitted poetry for our Poetry Contest, and photographs for our Art Contest, and in both cases was in the top 5!)

I visited your blog and found it thought-provoking, well-written, and moving, Tara. Simeon is a doll, and I look forward to reading future posts!

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