Today, March 21, is the second annual World Down Syndrome Day.
If you haven't had the joy and frustration of knowing and loving someone with this condition, then you are looking at if from the outside. Let me give you a tour of that love.
As an older sibling, it means, first and foremost, sacrifice. Your parents need to devote a greater share of their love and attention to this one person in your life, as do you. At first, as a small child, the sacrifice is bitter. As you grow and come to truly love this child, however, every sacrifice becomes sweet. That sweetness, I believe, comes from knowing that this child--who, in her heart and mind, will always be a child--loves you unconditionally, whether you choose to renounce your own needs and wants in her favor or not.
It means, for any family member or close friend, pain. There are many sources of this pain, too many to enumerate here. But I'll give you a sample.
The pain of watching that child be an outsider in the world she travels through.
The pain of knowing, even if you never see it, that she will be degraded, insulted, and cast aside by those who know not what they do. The pain of knowing that you are helpless to stop this tragedy.
The pain of watching her try to make sense of a world that you, with no physical or mental disabilities, are unable to make sense of.
These are just a few of the little heartbreaks found on this voyage.
Loving someone with Down's means patience. There's really nothing else I can say--if you haven't been there, you can't possibly understand.
Above all, though, this love and the object of it means laughter. My little sister Rachael--my Munchkin, pictured below--has given her family and friends this gift over and over through the years:
Now, I don't hold much stock in traditional religious themes. But if there is anything that I know, it is this: these children are so much more than what they seem.
They are angels delivered to us to teach us patience and the joy of giving, to teach us how to laugh, and to teach us how to live. Rachael has given me these, and many other, gifts in her twenty years of life.
I don't think there's any way I could possibly repay her, but I'll keep trying.
If you don't feel that you are possibly on the edge of humiliating yourself, of losing control of the whole thing, then possibly what you are doing isn't very vital. If you don't feel like you are writing somewhat over your head, why do it? If you don't have some doubt of your authority to tell this story, then you are not trying to tell enough. --John Irving