I was struck by a conversation I had with my youngest son the other night. Sadly, young Joshua had a classmate pass away a few somber weeks ago. Liam was a year older, only 13. I can’t imagine. It makes me think of that song where the young gal soberly sings, “To think that providence would take a child from his mother while she prays… is appalling.” It makes little sense… so hard to understand. This week Josh and I were speaking of where Liam may be now and what life might be like. The reality is — with each of our budding adolescents — that we can’t always control the questions that come. That’s a good thing…
I shared with Josh that I was fairly certain Liam was now free from his once ever-present wheelchair. Josh’s face lit up — thinking of his friend now running so wistfully and free. Josh beamed, and we laughed and smiled and thought of all Liam could do now that previously confined him on this planet. Those special needs kids are special people. Thinking I was on a celebratory roll, I said to Josh, “Just think… when you get to heaven, you won’t have Down syndrome any more!”
Josh’s joy immediately changed to a subtle scowl.
Realizing I may have been somewhat ambiguous in my parental encouragement, I attempted to re-address the situation and the ceasing of Josh’s joy. After all, at 12 years old, Josh is aware he has Down’s (just like he’s right-handed and has blonde hair) but it has never seemed significant to him (just like being right-handed and having blonde hair).
“You don’t care that you have Down syndrome, do you?” I humbly but directly asked.
No response. My affirming attempts were failing fast…
“Josh, I’ve never seen you care about having Down syndrome. Do you care?”
At that point, my delightful young son looked me straight in the eye and said loudly, “I do care!”
I was a little surprised. It has never seemed to bother him before. There are approximately 400,000 Americans with Down syndrome, and Josh has always embraced this delightful community. But before I could quickly offer any seemingly intelligent articulation behind my thoughts, my wise young son spoke again, “I do care. I like it! I like the way God made me.”
Once again this young man who has taught me more than any encyclopedia or advanced college class ever could, put life in perspective…
So many of us when experiencing perceived misfortune, focus on that perception; we focus on the misfortune — on the negative — on how we are different in ways that appear to many to be bad. We begin to think of ourselves as “victims,” focusing on what we don’t have as opposed to what we do. We then may become quickly paralyzed in that mindset, allowing our victim status to prompt additional unhealthy responses, such as bitterness, judgment, or feelings of entitlement.
One of the zillion things I appreciate about Josh is how he doesn’t see his disability as a negative. He has never allowed what the world views as misfortune to negate the joy nor purpose of his life. I’d like to tell you that such is also the result of incredible, humble, parental encouragement.
Well, maybe… maybe a little… It’s actually the way God made him.
Respectfully…
AR
It makes a difference that his parents always see him as a gift also!
He is a beautiful soul!
Ann,
This is a brilliant…actually beyond brilliant piece of writing. I hope you publish it somewhere. And yet again I, a friend of Josh, am overwhelmed with something that came out of his mouth. Thank you, thank you, thank you for taking the time to write such a superb article.
Steve