Now I know I've got a heart, because it's breaking.
--The Tin Woodman in
The Wizard of Oz
Last night, on the eve of the holiday dedicated to the celebration of love, I read a wrenching post entitled simply "
Alone". From the torn heart of a dad, comes the cry we hear echoed far too often by those in our local Down syndrome support group: what do I do when my child with a disability doesn't have friends?
Many of these children are involved in classes and activities in which they have a social life of sorts. But at 3:00 or 5:00 when the class ends, so does the interaction.
Adults who have proved to be independent enough to live on their own also grapple with this loneliness, going home after work to spend the evening hours in solitude, often sinking into depression before their families discover the cause.
And each time I hear or read of another similar account, I worry about the kind of world we inhabit where this unconcern for others happens with such regularity. Are we really so shallow that we can only appreciate diversity under threat of the law, or through the coercion of outside forces? (And who of us would
want a friend who was forced to grudgingly spare us an hour?)
Like so many parents caught in this uncertainty, I don't have the answers, only theories. But I'm going to venture to say that I don't believe most of humanity is that cold. I think they are only scared.
I remember the fear I had before I became acquainted with Wade. The fear of meeting others with disabilities, the fear of feeling uncomfortable in an unfamiliar world. What would I say? What would I do? What if I couldn't understand what they were saying? What if I said something inappropriate?
Now I realize that the sad thing about all of those "what ifs" is that they all were focused on
me. What if I reach out and something happens to me? What if I get embarrassed/hurt/humiliated?
Perhaps I needed the shaking and cracking of my own heart to realize that real love isn't about me.
For it was then that I discovered the greatest "what if" of all. What if I were the one eating alone? What if it were my child? What would I want others to do? And then the answers became simpler. My embarrassment didn't matter at all. What really mattered was that, even if just for a moment, I made someone else feel valued and loved.
And I am learning that the greatest things I can do are to change myself and then to use that change to influence others. That's why for story time tonight, I read the post "Alone" to Randall and Chris. It opened the door to some good questions we might have otherwise missed asking ourselves.
I can't predict the future; I don't know how my children will respond when I am not present. But I can hope that I am planting seeds of compassion that will grow to influence others. And I can hope that as you have read this post, you have been influenced as well, and that tomorrow you will go out to greet the world, welcoming and unafraid.
Because you know what it feels to be human and to want love. And you know that you hold one of the keys to making a difference.
The question, "Why do children suffer?" has no answer, unless it's simply, "To break our hearts." Once our hearts get broken, they never fully heal. They always ache. But perhaps a broken heart is a more loving instrument. Perhaps only after our hearts have cracked wide open, have finally and totally unclenched, can we truly know love without boundaries.
--Fred Epstein, M.D.,
If I Get to Five
