Thursday, March 18, 2010

Experiencing Life!

Do you know the difference between education and experience? Education is when you read the fine print; experience is what you get when you don't. ~Pete Seeger

As I continue my journey through this life with Sam I run across so many questions???? Some days I can simply overwhelm myself with the "What if's?". Sometimes I paralyze my thoughts, my actions and my dreams with the unknown. When I learned of Sam's diagnosis I went into hyper research mode (my sister-in-law Julie can attest to this). She asked me what she could do I told her to go to and buy the top selling books on Down syndrome.

I spent the first week of Sam's life reading through the books she brought me and staring through tear filled eyes at the little baby in front of me. Before the books came Jeff and I both commented "He doesn't look like he has Down syndrome". But when I opened the after page, photo after photo...I saw Sam. What scared me more was when I read the text, some of the books were encouraging, some were downright scary and part of me just kept believing that they were not talking about my child, they were not talking about my Sam. What I didn't realize is that those books could have never prepared me for the experience and journey that I was about to embark on. I read and read and read and still to this day read everything I can about Down syndrome. But my knowledge, my real experience comes from the day to day stuff...our life with Sam. Although the books were helpful to give me a broad picture of how Down syndrome may affect my child they in no way could define how this child would affect me.

I read in quite a few of the books and of course heard from countless people that children with Down syndrome are gentle, loving and happy. Hmmmm, Sam must have forgot to read that section. Yes, Sam is loving and happy if he's doing what he wants to do or getting his way but Sam is also strong-willed, persistent and can yell "NO" loud enough to be heard in 2 counties. Gentle doesn't quite come to mind when Sam and I are trying to work through math and he is trying to push over the magnetic board or throwing the marbles across the room. Gentle doesn't strike me when he's bopping the dog on the head or hammering on his older brother because he's sitting too close. I'm pretty sure both Bob and Ellen Doman from NACD would agree that Sam had a few behavior issues that didn't appear to be gentle, loving or happy. Sam is Sam...unlike any child I have ever met and unlike any child I read about in all my books on Down syndrome. In the early days Sam wasn't one of those children who watched other children and did the same thing, he struggled to crawl, walk, make sounds and then struggled even more to hear, listen and speak (we still don't have listening down quite yet). Sam had to be shown how to do things other children just picked up on naturally and in some cases, he had to be shown over and over. But I quickly realized that if I took the time to try something help him learn something new...we made the type of progress I had hoped for and he continues to make advances. Life is really all about experiences and opportunity. When Sam's behavior got in the way of my going grocery shopping or taking him to any store for that matter I could have chosen to take the easy way arrange for him to stay home. When Sam acted out in restaurants, we could of chosen to eat at home and skipped eating out. When Sam became bored and threw a tantrum in church we could have decided not to go back and just sleep in on Sunday mornings, God would understand.
But each of those experiences were a chance to introduce something new, to work on an area he struggled with, to help him succeed, to watch him grow. If we limit his experiences we disable him further. Now just as the quote at the beginning of this post states...these experiences for Sam have been both positive and negative, there isn't a clearly defined right and wrong way to help him through an experience...but each time we learn a little bit more. We learn what works for Sam and also what doesn't work, we find things he loves and things he hates. We begin to come up with strategies that work for both Sam and the people who work with him. At the same time we try to respect Sam's choice to like or dislike something...but we also try to keep in mind that there are many things in life we all dislike but still have to do because it is simply a part of life.
There are those days when I wish this was all so much easier. When I wish I didn't have to think or work so hard at it. Today as I watched Sam empty the dishwasher I couldn't help but think that this type of task would have normally taken me 2-3 minutes but Sam was still emptying after 15 minutes and the dishes were on the counter top and not even in the cabinet yet. After that we sorted laundry, another 20 minute task as we noted the colors, who's clothes they were and what type of clothing it was. My mind cycles through all the tasks still to be completed while my heart slows me down to allow Sam to learn and complete another task. The Lord is desperately trying to teach me to be patient, to teach me to be humble, to teach me through these experiences.
Life is the art of drawing without an eraser. ~John Gardner
Each of our lives and the lives of our children are like an empty canvas. It is up to us to determine what our life and their life portrait will look like. Our experiences and what we learn from them shape who we are and what we become. I hope to continue to add a lot of color and depth to Sam's portrait and on those days when the colors become dark and the strokes are thick and heavy I will try to stop, take a moment to reflect and begin again creating a unique, one of a kind, priceless creation that the Lord entrusted to me.
This post brings to mind one of my absolute favorite YouTube videos "Difference is an Artist's Game".


  1. "The Lord is desperately trying to teach me to be patient, to teach me to be humble, to teach me through these experiences".

    Beautifully stated Sue, thank you for sharing!

    Raquel B.

  2. Always enjoy reading your blog. I too think when meeting someone new, and one of their first comments are about how happy and loving kids with DS are,...stick around....Jessie is just Jessie...but certainly cannot be defined by that stereotype! I too have been thinking about a lot (and contemplating blogging about) that crazy back and forth that our minds go through on any given day. I am the luckiest mom on earth, Jessie is such a joy, an unexpected moment....I wish anything was ever easy, wishing at the park, I could sit on the bench and watch like other moms. A bit later, we can be "up" again, knowing God's grace is sufficient.